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Welcome,
 
Today you can be one step closer to living a more satisfying life with less stress.  Some benefits from counseling include: Saving your Marriage, Managing Anxiety, Depression, and Anger, Improving Communication, Boosting Self - Confidence, Learning how to Stop Abuse, To Receive Help with More Effective Living, Learning How to Forgive and Move Foward, Decreasing Temptation for Drugs, Alcohol, and Pornography.  If you're looking for help and support, please call me today.
 
(Membership In) The American Association of Christian Counselors
 
 

 

   Theravive

 

 

 

Common Questions Answered

Steven Kopor's Bio
Rates and Insurance
Confidentiality
Do I really need Counseling?
How do I know if Counseling is right for me?
What is Counseling like?
What about Medications vs Counseling?
Benefits and Emotional Risks of Counseling
Termination of Counseling
Attendance Policy
 
How To Protect Your Children

Steven Kopor's Bio -  Steven Kopor is a Licensed Professional Counselor-Supervisor, a Licensed Chemical Dependency Counselor, and a Board Certified Professional Christian Counselor who has a successful private practice in Fort Worth, Texas.   

With over 25 years experience, a MA in Psychology and a MBA in Strategic Leadership, he is currently helping adult individuals and couples only.  He practices Solution Focused Therapy and Cognitive Behavioral Therapy from a Christian Perspective.  He works with each client to help them build on their strengths and accomplish the changes they are committed to making.

Among his areas of expertise are:  Marriage and Relationship Issues, Clinical Disorders, Spiritual Problems, Addictions, Trauma, Abortion Recovery, Grief Work, and a variety of other Personal Issues.  He is especially effective in helping women who are in emotionally abusive relationships.

In addition to being a therapist, Steven has presented at National and local conferences, and been interviewed on Christian television and Christian radio.  He has several publications, most notably, a book titled, Alcoholic Christians.  He is working on his next book, with his wife, tentatively titled, Spiritual and Psychological Healing After Abortion.  He also volunteers for Rachel Ministries Ministries, which provides spiritual and psychological healing for those who had an abortion, or were complicit, repented, and are still suffering spiritually and psychologically. He also volunteers at his local Church

Steven is a member of The American Association of Christian Counselors.  Steve's Counseling Philosophy 


Rates and Insurance - For patients not using health insurance the fee for counseling services is $125 per 55 minute session.  For those using health insurance, session fees are based on the insurance company’s fee schedule.  The Patient is personally responsible for deductibles, co-payments, co-insurance, and non-covered or ineligible services.  If you have eligible insurance coverage, Christian Counseling of Texas PLLC (CCofT) will submit claims on your behalf. If Patient is ineligible at the time services are rendered, Patient is responsible for full payment. Please have your payment ready at the beginning of each session.   Payments can be made by cash or personal check. Please make check payable to Christian Counseling of Texas. 

The following items are not covered by insurance:  Reports & letters, $25.   Records request, $10 dollars.  Court appearances, $500 per day of appearance.  Phone calls, $1 per minute after the first five minutes.  There is a $20 charge on all returned checks.  Special mailing fees will be passed on to the person requesting the records. Attendance Policy Violations, $75 (Not the co-pay fee)

Confidentiality - is an important trust between a client and Licensed Professional Counselor. Successful therapy requires a high degree of trust with highly sensitive subject matter that is usually not discussed anywhere but in the therapist's office. Every therapist should provide a written copy of their confidential disclosure agreement, and you can expect that what you discuss in session will not be shared with anyone. This is called “Informed Consent.” Sometimes, however, you may want your therapist to share information or give an update to someone, but by law your therapist can't release this information without obtaining your written permission.

The law protects the relationship between a client and Licensed Professional Counselor. Communication between a therapist and client, and the client's records are confidential under the provisions of the Texas Health and Safety Code, Chapter 611, and other state and federal statutes or rules. A licensee can't disclose any communication, record, or identity of a client except as provided in Texas Health and Saftey Code, Chapter 611 or other state or federal statutes or rules. Information that you discuss in your therapy sessions is confidential, but there are exceptions.

A licensee must report information if required by any of the following statutes: Texas Family Code, Chapter 261, concerning abuse or neglect of a minor; Texas Human Resources Code, Chapter 48, concerning abuse, neglect, or exploitation of elderly or disabled persons. I am required by law to report this to the appropriate authorities immediately

Do I really need Counseling? - When you need expert confidential guidance, talking with a counselor, sharing your thoughts, venting your feelings - without worrying about judgmentalism, over-reacting or creating drama - can be very helpful. Counseling can be the beginning of living a more productive, meaningful, and satisfying life. Many people also find that counselors can be a tremendous asset to managing personal growth, interpersonal relationships, family concerns, marriage issues, and the hassles of daily life. Counselors can provide a fresh perspective on a difficult problem or point you in the direction of a solution. The benefits you obtain from counseling depend on how well you use the process and put into practice what you learn.

How do I know if Counseling is right for me? - People have many different motivations for coming to psychotherapy. Some may be going through a major life transition (unemployment, divorce, new job, etc.), or are not handling stressful circumstances well. Some people need assistance managing a range of other issues such as low self-esteem, depression, anxiety, addictions, relationship problems, spiritual conflicts and creative blocks. Counseling can provide some much needed encouragement and help with skills to get them through these periods. Others may be at a point where they are ready to learn more about themselves or want to be more effective with their goals in life. In short, people seeking counseling are ready to meet the challenges in their lives and ready to make changes in their lives.

What is Counseling like? - Because each person has different issues and goals for therapy, therapy will be different depending on the individual. In general, you can expect to discuss the current events happening in your life, your personal history relevant to your issue, and report progress (or any new insights gained) from the previous therapy session. Depending on your specific needs, therapy can be short-term, for a specific issue, or longer-term, to deal with more difficult patterns or your desire for more personal development. Either way, it is most common to schedule regular sessions with your therapist (usually weekly). It is important to understand that you will get more results from therapy if you work hard. The ultimate purpose of counseling is to help you bring what you learn in session back into your life. Therefore, beyond the work you do in counseling sessions, your therapist may suggest some things you can do outside of therapy to support your progress - such as reading a pertinent book, journaling on specific topics, noting particular behaviors or taking action on your goals. People seeking psychotherapy are ready to make positive changes in their lives, are open to new perspectives and take responsibility for their lives.

Christian Counseling of Texas PLLC, provides professional counseling from a Christian perspective to address psychological, emotional and mental health issues. Our approach is eclectic, usually focusing on identifying solvable problems, setting realistic goals, designing interventions, and examining progress and outcomes. Generally, we practice cognitive behavioral therapy and solution focused therapy. At Christian Counseling of Texas PLLC, we are professional counselors in the service of Christ.

What about Medications vs Counseling? - Prescribing medications is outside the scope of work for my license. It is the psychiatrist or physician who can prescribe medication, not the counselor, therapist, or social worker. Nevertheless, I have worked in the business for decades, worked with many psychiatrists, and provided counseling for many patients who were taking psychotropic medications. Over the years, I have developed an understanding about medications which I would like to share.

I think there are two circumstances when psych meds are medically necessary: 1) When a person is schizophrenic or psychotic, especially when they are experiencing command hallucinations, telling them to kill somebody. In this case I think best practice is to be stabilized on meds until the homocidal thoughts go away, 2) When a person is so depressed and suicidal. In these two cases I think medication is medically necessary.

Outside of these two cases, I think the use of psych meds is a personal choice. When someone is very depressed, not suicidal, they could choose not to take meds and embrace the pain. They may choose to change their diet, exercise, go to therapy, or Google "alternative treatments" for their symptoms. Some people are just dead set on not taking meds and it's up to them. Others feel depressed, take meds, and feel great. Whatever your thoughts on taking meds, it is always a good idea, and I recommend, discussing the issue with your physician. Hear what your doctor has to say and then make an informed decision.

My professional opinion is that the combination of psychotropic medications combined with psychotherapy is the treatment method of choice. If the healing value of meds without therapy were two, and the healing value of therapy without meds were also two, when combining them, the synergy isn't 2 + 2 =4, instead the synergy equals 70. You can best achieve sustainable growth and a greater sense of well-being with an integrative approach to wellness. Working with your medical doctor and counselor, you can determine what's best for you, and in some cases a combination of medication and counseling is the right course of action.

Benefits and Emotional Risks of Counseling - The majority of individuals and families that obtain counseling services benefit from the experience, but some risks do exist. As counseling begins, some experience unwanted feelings, because examining old issues may produce unhappiness, anger, guilt or frustration. Important personal decisions are often an outcome of counseling. These are likely to produce new opportunities as well as unique challenges. Sometimes a decision that is positive for one family member will be viewed as negative by another. Don’t hesitate to discuss treatment goals, procedures, or your impressions of the services that are being provided.

Termination of Counseling - When the goals we define at the beginning of counseling are met, unless new goals are defined, the logical conclusion to counseling has arrived. Sometimes it becomes apparent that goals can not be met. This, too, is a logical time to stop meeting. If I do not believe I can be of help, I will certainly let you know. That being said, the Patient can always stop counseling for any reason. Ideally, there would be agreement as to when it is time to stop meeting. Likewise, if I think your continuation in counseling is a medical necessity, I will tell you so and make a referral to another therapist. It is best to have a defined final session where we can review progress and establish a discharge plan.

Attendance Policy - It’s my expectation that patients keep their scheduled counseling appointments according to the Advanced Multiple Schedule.

Therefore, I view all “no show/no call” patients, cancellations with less than 24 hour advance notice, or any missed appointment, as a very serious problem and a breach of the Counseling Services Agreement.  Since insurance companies do not pay for these missed appointments, patient agrees to accept financial responsibility for the missed session and pay $75, not the co - pay fee, through Pay Pal, on my website, before another session is scheduled.  Any patient who misses an appointment and does not wish to pay the $75 fee will not be rescheduled.

I immediately discharge all "no show/no call clients" and fill the time slot ASAP, often immediately. Therefore, calling after a missed appointment may result in already having lost the standing appointment time.  Any patient who repeatedly (more than twice per quarter) cancel appointments, even to reschedule, even with 24 hours advance notice, will result in patient being discharged.

Missed appointments mean one thing to me: lost revenue. Your reservation of the scheduled session time prevents me from using this time for another patient.  If I allow just one person per week to miss their appointment and not collect the Missed Appointment Fee my annual income drops about $5000 per year.  I can’t allow those I’m trying to help to negatively effect my livelihood in this way.

THE END

The information (below in blue) is sited for educational purposes.  Source: National Institute on Mental Health; National Institutes of Health; U.S. Department of Health and Human Services. NIMH provides a variety of free online publications for use by health care providers, researchers, educators, and the general public.  How to Access NIMH Publications - www.NIMH.com.  NIMH does not endorse or recommend any commercial products, processes, or services. NIDA also does not provide medical advice, treatment recommendations, or referrals for specific individuals or situations.
 

Chronic Illness & Mental Health

The Teen Brain: 6 Things to Know

Treatment of Children with Mental Illness

Looking at My Genes: What Can They Tell Me About My Mental Health?

Clinical Research Trials and You: Questions and Answers

About the National Institute of Mental Health (NIMH)

Helping Children and Adolescents Cope with Violence and Disasters: What Community Members Can Do

Helping Children and Adolescents Cope with Violence and Disasters: What Parents Can Do

Helping Children and Adolescents Cope with Violence and Disasters: What Rescue Workers Can Do

 

Chronic Illness & Mental Health

Depression is a real illness. Treatment can help you live to the fullest extent possible, even when you have another illness.

It is common to feel sad or discouraged after a heart attack, a cancer diagnosis, or if you are trying to manage a chronic condition like pain. You may be facing new limits on what you can do and feel anxious about treatment outcomes and the future. It may be hard to adapt to a new reality and to cope with the changes and ongoing treatment that come with the diagnosis. Your favorite activities, like hiking or gardening, may be harder to do.

Temporary feelings of sadness are expected, but if these and other symptoms last longer than a couple of weeks, you may have depression. Depression affects your ability to carry on with daily life and to enjoy work, leisure, friends, and family. The health effects of depression go beyond mood—depression is a serious medical illness with many symptoms, including physical ones. Some symptoms of depression are:

Feeling sad, irritable, or anxious
Feeling empty, hopeless, guilty, or worthless
Loss of pleasure in usually-enjoyed hobbies or activities, including sex
Fatigue and decreased energy, feeling listless
Trouble concentrating, remembering details, and making decisions
Not being able to sleep, or sleeping too much. Waking too early
Eating too much or not wanting to eat at all, possibly with unplanned weight gain or loss
Thoughts of death, suicide or suicide attempts
Aches or pains, headaches, cramps, or digestive problems without a clear physical cause and/or that do not ease even with treatment
Remember: Depression is treatable—even if you have another medical illness or condition. For more information, see the National Institute of Mental Health (NIMH) booklet on Depression at http://www.nimh.nih.gov/health/publications/depression/index.shtml.

People with other chronic medical conditions have a higher risk of depression.

The same factors that increase risk of depression in otherwise healthy people also raise the risk in people with other medical illnesses. These risk factors include a personal or family history of depression or loss of family members to suicide.

However, there are some risk factors directly related to having another illness. For example, conditions such as Parkinson’s disease and stroke cause changes in the brain. In some cases, these changes may have a direct role in depression. Illness-related anxiety and stress can also trigger symptoms of depression.

Depression is common among people who have chronic illnesses such as the following:

Cancer
Coronary heart disease
Diabetes
Epilepsy
Multiple sclerosis
Stroke
Alzheimer’s disease
HIV/AIDS
Parkinson’s disease
Systemic lupus erythematosus
Rheumatoid arthritis
Sometimes, symptoms of depression may follow a recent medical diagnosis but lift as you adjust or as the other condition is treated. In other cases, certain medications used to treat the illness may trigger depression. Depression may persist, even as physical health improves.

Research suggests that people who have depression and another medical illness tend to have more severe symptoms of both illnesses. They may have more difficulty adapting to their co-occurring illness and more medical costs than those who do not also have depression.

It is not yet clear whether treatment of depression when another illness is present can improve physical health. However, it is still important to seek treatment. It can make a difference in day-to-day life if you are coping with a chronic or long-term illness.

People with depression are at higher risk for other medical conditions.

It may have come as no surprise that people with a medical illness or condition are more likely to suffer from depression. The reverse is also true: the risk of developing some physical illnesses is higher in people with depression.

People with depression have an increased risk of cardiovascular disease, diabetes, stroke, and Alzheimer’s disease, for example. Research also suggests that people with depression are at higher risk for osteoporosis relative to others. The reasons are not yet clear. One factor with some of these illnesses is that many people with depression may have less access to good medical care. They may have a harder time caring for their health, for example, seeking care, taking prescribed medication, eating well, and exercising.

Ongoing research is also exploring whether physiological changes seen in depression may play a role in increasing the risk of physical illness. In people with depression, scientists have found changes in the way several different systems in the body function, all of which can have an impact on physical health:

Signs of increased inflammation
Changes in the control of heart rate and blood circulation
Abnormalities in stress hormones
Metabolic changes typical of those seen in people at risk for diabetes
It is not yet clear whether these changes, seen in depression, raise the risk of other medical illness. However, the negative impact of depression on mental health and everyday life is clear.

Depression is treatable even when other illness is present.

Do not dismiss depression as a normal part of having a chronic illness. Effective treatment for depression is available and can help even if you have another medical illness or condition. If you or a loved one think you have depression, it is important to tell your health care provider and explore treatment options.

You should also inform the health care provider about all treatments or medications you are already receiving, including treatment for depression (prescribed medications and dietary supplements). Sharing information can help avoid problems with multiple medications interfering with each other. It also helps the provider stay informed about your overall health and treatment issues.

Recovery from depression takes time, but treatment can improve the quality of life even if you have a medical illness. Treatments for depression include:

Cognitive behavioral therapy (CBT), or talk therapy, that helps people change negative thinking styles and behaviors that may contribute to their depression. Interpersonal and other types of time-limited psychotherapy have also been proven effective, in some cases combined with antidepressant medication.
Antidepressant medications, including, but not limited to, selective serotonin reuptake inhibitors (SSRIs) and serotonin and norepinephrine reuptake inhibitors (SNRIs).
While electroconvulsive therapy (ECT) is generally reserved for the most severe cases of depression, newer brain stimulation approaches, including transcranial magnetic stimulation (TMS), can help some people with depression without the need for general anesthesia and with few side effects.

 

The Teen Brain: 6 Things to Know

The Teen Brain: 6 Things to Know (Fact Sheet)

Did you know that big and important changes are happening to the brain during adolescence? Here are 6 things to know about the teen brain:

Your brain does not keep getting bigger as you get older

For girls, the brain reaches its largest physical size around 11 years old and for boys, the brain reaches its largest physical size around age 14. Of course, this difference in age does not mean either boys or girls are smarter than one another!

But that doesn’t mean your brain is done maturing

For both boys and girls, although your brain may be as large as it will ever be, your brain doesn't finish developing and maturing until your mid- to late-20s. The front part of the brain, called the prefrontal cortex, is one of the last brain regions to mature. It is the area responsible for planning, prioritizing and controlling impulses.

The teen brain is ready to learn and adapt

In a digital world that is constantly changing, the adolescent brain is well prepared to adapt to new technology—and is shaped in return by experience.

Many mental disorders appear during adolescence

All the big changes the brain is experiencing may explain why adolescence is the time when many mental disorders—such as schizophrenia, anxiety, depression, bipolar disorder, and eating disorders—emerge.

The teen brain is resilient

Although adolescence is a vulnerable time for the brain and for teenagers in general, most teens go on to become healthy adults. Some changes in the brain during this important phase of development actually may help protect against long-term mental disorders.

Teens need more sleep than children and adults

Although it may seem like teens are lazy, science shows that melatonin levels (or the "sleep hormone" levels) in the blood naturally rise later at night and fall later in the morning than in most children and adults. This may explain why many teens stay up late and struggle with getting up in the morning. Teens should get about 9-10 hours of sleep a night, but most teens don’t get enough sleep. A lack of sleep makes paying attention hard, increases impulsivity and may also increase irritability and depression.

Treatment of Children with Mental Illness

Introduction

Research shows that half of all lifetime cases of mental illness begin by age 14.1 Scientists are discovering that changes in the body leading to mental illness may start much earlier, before any symptoms appear.

Through greater understanding of when and how fast specific areas of children's brains develop, we are learning more about the early stages of a wide range of mental illnesses that appear later in life. Helping young children and their parents manage difficulties early in life may prevent the development of disorders. Once mental illness develops, it becomes a regular part of your child's behavior and more difficult to treat. Even though we know how to treat (though not yet cure) many disorders, many children with mental illnesses are not getting treatment.

This fact sheet addresses common questions about diagnosis and treatment options for children with mental illnesses. Disorders affecting children may include anxiety disorders, attention deficit hyperactivity disorder (ADHD), autism spectrum disorders, bipolar disorder, depression, eating disorders, and schizophrenia.

Q. What should I do if I am concerned about mental, behavioral, or emotional symptoms in my child?

A. Talk to your child's doctor or health care provider. Ask questions and learn everything you can about the behavior or symptoms that worry you. If your child is in school ask the teacher if your child has been showing worrisome changes in behavior. Share this with your child's doctor or health care provider. Keep in mind that every child is different. Even normal development, such as when children develop language, motor, and social skills, varies from child to child. Ask if your child needs further evaluation by a specialist with experience in child behavioral problems. Specialists may include psychiatrists, psychologists, social workers, psychiatric nurses, and behavioral therapists. Educators may also help evaluate your child.

If you take your child to a specialist, ask, "Do you have experience treating the problems I see in my child?" Don't be afraid to interview more than one specialist to find the right fit. Continue to learn everything you can about the problem or diagnosis. The more you learn, the better you can work with your child's doctor and make decisions that feel right for you, your child, and your family.

Q. How do I know if my child's problems are serious?

A. Not every problem is serious. In fact, many everyday stresses can cause changes in your child's behavior. For example, the birth of a sibling may cause a child to temporarily act much younger than he or she is. It is important to be able to tell the difference between typical behavior changes and those associated with more serious problems. Pay special attention to behaviors that include:

Problems across a variety of settings, such as at school, at home, or with peers
Changes in appetite or sleep
Social withdrawal, or fearful behavior toward things your child normally is not afraid of
Returning to behaviors more common in younger children, such as bed-wetting, for a long time
Signs of being upset, such as sadness or tearfulness
Signs of self-destructive behavior, such as head-banging, or a tendency to get hurt often
Repeated thoughts of death.
Q. Can symptoms be caused by a death in the family, illness in a parent, family financial problems, divorce, or other events?

A. Yes. Every member of a family is affected by tragedy or extreme stress, even the youngest child. It's normal for stress to cause a child to be upset. Remember this if you see mental, emotional, or behavioral symptoms in your child. If it takes more than one month for your child to get used to a situation, or if your child has severe reactions, talk to your child's doctor.

Check your child's response to stress. Take note if he or she gets better with time or if professional care is needed. Stressful events are challenging, but they give you a chance to teach your child important ways to cope.

Q. How are mental illnesses diagnosed in young children?

A. Just like adults, children with mental illness are diagnosed after a doctor or mental health specialist carefully observes signs and symptoms. Some primary care physicians can diagnose your child themselves, but many will send you to a specialist who can diagnose and treat children.

Before diagnosing a mental illness, the doctor or specialist tries to rule out other possible causes for your child's behavior. The doctor will:

Take a history of any important medical problems
Take a history of the problem - how long you have seen the problem - as well as a history of your child's development
Take a family history of mental disorders
Ask if the child has experienced physical or psychological traumas, such as a natural disaster, or situations that may cause stress, such as a death in the family
Consider reports from parents and other caretakers or teachers.
Very young children often cannot express their thoughts and feelings, so making a diagnosis can be challenging. The signs of a mental illness in a young child may be quite different from those in an older child or adult.

As parents and caregivers know, children are constantly changing and growing. Diagnosis and treatment must be viewed with these changes in mind. While some problems are short-lived and don't need treatment, others are ongoing and may be very serious. In either case, more information will help you understand treatment choices and manage the disorder or problem most effectively.

While diagnosing mental health problems in young children can be challenging, it is important. A diagnosis can be used to guide treatment and link your child's care to research on children with similar problems.

Q. Will my child get better with time?

A. Some children get better with time. But other children need ongoing professional help. Talk to your child's doctor or specialist about problems that are severe, continuous, and affect daily activities. Also, don't delay seeking help. Treatment may produce better results if started early.

Q. Are there treatment options for children?

A. Yes. Once a diagnosis is made, your child's specialist will recommend a specific treatment. It is important to understand the various treatment choices, which often include psychotherapy or medication. Talk about the options with a health care professional who has experience treating the illness observed in your child. Some treatment choices have been studied experimentally, and other treatments are a part of health care practice. In addition, not every community has every type of service or program.

Q. What are psychotropic medications?

A. Psychotropic medications are substances that affect brain chemicals related to mood and behavior. In recent years, research has been conducted to understand the benefits and risks of using psychotropics in children. Still, more needs to be learned about the effects of psychotropics, especially in children under six years of age. While researchers are trying to clarify how early treatment affects a growing body, families and doctors should weigh the benefits and risks of medication. Each child has individual needs, and each child needs to be monitored closely while taking medications.

Q. Are there treatments other than medications?

A. Yes. Psychosocial therapies can be very effective alone and in combination with medications. Psychosocial therapies are also called "talk therapies" or "behavioral therapy," and they help people with mental illness change behavior. Therapies that teach parents and children coping strategies can also be effective.2

Cognitive behavioral therapy (CBT) is a type of psychotherapy that can be used with children. It has been widely studied and is an effective treatment for a number of conditions, such as depression, obsessive-compulsive disorder, and social anxiety. A person in CBT learns to change distorted thinking patterns and unhealthy behavior. Children can receive CBT with or without their parents, as well as in a group setting. CBT can be adapted to fit the needs of each child. It is especially useful when treating anxiety disorders.3

Additionally, therapies for ADHD are numerous and include behavioral parent training and behavioral classroom management. Visit the NIMH Web site for more information about therapies for ADHD.

Some children benefit from a combination of different psychosocial approaches. An example is behavioral parent management training in combination with CBT for the child. In other cases, a combination of medication and psychosocial therapies may be most effective. Psychosocial therapies often take time, effort, and patience. However, sometimes children learn new skills that may have positive long-term benefits.

More information about treatment choices can be found in the psychotherapies and medications sections of the NIMH Web site.

Q. When is it a good idea to use psychotropic medications in young children?

A. When the benefits of treatment outweigh the risks, psychotropic medications may be prescribed. Some children need medication to manage severe and difficult problems. Without treatment, these children would suffer serious or dangerous consequences. In addition, psychosocial treatments may not always be effective by themselves. In some instances, however, they can be quite effective when combined with medication.

Ask your doctor questions about the risks of starting and continuing your child on these medications. Learn everything you can about the medications prescribed for your child. Learn about possible side effects, some of which may be harmful. Know what a particular treatment is supposed to do. For example, will it change a specific behavior? If you do not see these changes while your child is taking the medication, talk to his or her doctor. Also, discuss the risks of stopping your child's medication with your doctor.

Q. Does medication affect young children differently than older children or adults?

A. Yes. Young children handle medications differently than older children and adults. The brains of young children change and develop rapidly. Studies have found that developing brains can be very sensitive to medications. There are also developmental differences in how children metabolize - how their bodies process - medications. Therefore, doctors should carefully consider the dosage or how much medication to give each child. Much more research is needed to determine the effects and benefits of medications in children of all ages. But keep in mind that serious untreated mental disorders themselves can harm brain development.

Also, it is important to avoid drug interactions. If your child takes medicine for asthma or cold symptoms, talk to your doctor or pharmacist. Drug interactions could cause medications to not work as intended or lead to serious side effects.

Q. How should medication be included in an overall treatment plan?

A. Medication should be used with other treatments. It should not be the only treatment. Consider other services, such as family therapy, family support services, educational classes, and behavior management techniques. If your child's doctor prescribes medication, he or she should evaluate your child regularly to make sure the medication is working. Children need treatment plans tailored to their individual problems and needs.

Q. What medications are used for which kinds of childhood mental disorders?

A. Psychotropic medications include stimulants, antidepressants, anti-anxiety medications, antipsychotics, and mood stabilizers. Dosages approved by the U.S. Food and Drug Administration (FDA) for use in children depend on body weight and age. NIMH's medications booklet describes the types of psychotropic medications and includes a chart that lists the ages for which each medication is FDA-approved. See the FDA Web site  for the latest information on medication approvals, warnings, and patient information guides.

Q. What does it mean if a medication is specifically approved for use in children?

A. When the FDA approves a medication, it means the drug manufacturer provided the agency with information showing the medication is safe and effective in a particular group of people. Based on this information, the drug's label lists proper dosage, potential side effects, and approved age. Medications approved for children follow these guidelines.

Many psychotropic medications have not been studied in children, which means they have not been approved by the FDA for use in children. But doctors may prescribe medications as they feel appropriate, even if those uses are not included on the label. This is called "off-label" use. Research shows that off-label use of some medications works well in some children. Other medications need more study in children. In particular, the use of most psychotropic medications has not been adequately studied in preschoolers.

More studies in children are needed before we can fully know the appropriate dosages, how a medication works in children, and what effects a medication might have on learning and development.

Q. Why haven't many medications been tested in children?

A. In the past, medications were seldom studied in children because mental illness was not recognized in childhood. Also, there were ethical concerns about involving children in research. This led to a lack of knowledge about the best treatments for children. In clinical settings today, children with mental or behavioral disorders are being prescribed medications at increasingly early ages. The FDA has been urging that medications be appropriately studied in children, and Congress passed legislation in 1997 offering incentives to drug manufacturers to carry out such testing. These activities have helped increase research on the effects of medications in children.

There still are ethical concerns about testing medications in children. However, strict rules protect participants in research studies. Each study must go through many types of review before, and after it begins.

Q. How do I work with my child's school?

A. If your child is having problems in school, or if a teacher raises concerns, you can work with the school to find a solution. You may ask the school to conduct an evaluation to determine whether your child qualifies for special education services. However, not all children diagnosed with a mental illness qualify for these services.

Start by speaking with your child's teacher, school counselor, school nurse, or the school's parent organization. These professionals can help you get an evaluation started. Also, each state has a Parent Training and Information Center and a Protection and Advocacy Agency that can help you request the evaluation. The evaluation must be conducted by a team of professionals who assess all areas related to the suspected disability using a variety of tools and measures.

Q. What resources are available from the school?

A. Once your child has been evaluated, there are several options for him or her, depending on the specific needs. If special education services are needed, and if your child is eligible under the Individuals with Disabilities Education Act (IDEA), the school district must develop an "individualized education program" specifically for your child within 30 days.

If your child is not eligible for special education services, he or she is still entitled to "free appropriate public education," available to all public school children with disabilities under Section 504 of the Rehabilitation Act of 1973. Your child is entitled to this regardless of the nature or severity of his or her disability.

The U.S. Department of Education's Office for Civil Rights enforces Section 504  in programs and activities that receive Federal education funds. Visit programs for children with disabilities  for more information.

Q. What special challenges can school present?

A. Each school year brings a new teacher and new schoolwork. This change can be difficult for some children. Inform the teachers that your child has a mental illness when he or she starts school or moves to a new class. Additional support will help your child adjust to the change.

Q. What else can I do to help my child?

A.Children with mental illness need guidance and understanding from their parents and teachers. This support can help your child achieve his or her full potential and succeed in school. Before a child is diagnosed, frustration, blame, and anger may have built up within a family. Parents and children may need special help to undo these unhealthy interaction patterns. Mental health professionals can counsel the child and family to help everyone develop new skills, attitudes, and ways of relating to each other.

Parents can also help by taking part in parenting skills training. This helps parents learn how to handle difficult situations and behaviors. Training encourages parents to share a pleasant or relaxing activity with their child, to notice and point out what their child does well, and to praise their child's strengths and abilities. Parents may also learn to arrange family situations in more positive ways. Also, parents may benefit from learning stress-management techniques to help them deal with frustration and respond calmly to their child's behavior.

Sometimes, the whole family may need counseling. Therapists can help family members find better ways to handle disruptive behaviors and encourage behavior changes. Finally, support groups help parents and families connect with others who have similar problems and concerns. Groups often meet regularly to share frustrations and successes, to exchange information about recommended specialists and strategies, and to talk with experts.

Q. How can families of children with mental illness get support?

A. Like other serious illnesses, taking care of a child with mental illness is hard on the parents, family, and other caregivers. Caregivers often must tend to the medical needs of their loved ones, and also deal with how it affects their own health. The stress that caregivers are under may lead to missed work or lost free time. It can strain relationships with people who may not understand the situation and lead to physical and mental exhaustion.

Stress from caregiving can make it hard to cope with your child's symptoms. One study shows that if a caregiver is under enormous stress, his or her loved one has more difficulty sticking to the treatment plan.4 It is important to look after your own physical and mental health. You may also find it helpful to join a local support group.

Q. Where can I go for help?

A. If you are unsure where to go for help, ask your family doctor. Others who can help are listed below.

Mental health specialists, such as psychiatrists, psychologists, social workers, or mental health counselors
Health maintenance organizations
Community mental health centers
Hospital psychiatry departments and outpatient clinics
Mental health programs at universities or medical schools
State hospital outpatient clinics
Family services, social agencies, or clergy
Peer support groups
Private clinics and facilities
Employee assistance programs
Local medical and/or psychiatric societies.
You can also check the phone book under "mental health," "health," "social services," "hotlines," or "physicians" for phone numbers and addresses. An emergency room doctor can also provide temporary help and can tell you where and how to get further help.

More information on mental health is at the NIMH Web site. For the latest information on medications, see the U.S. Food and Drug Administration  website.


Looking at My Genes: What Can They Tell Me About My Mental Health?

Mental disorders are health conditions that affect how a person thinks, feels, and acts. These disorders can impact a person’s life in significant ways, including how he or she copes with life, earns a living, and relates to others.

“Why did this happen?” That is a common question that patients and their families have following a psychotic episode, suicide attempt, or the diagnosis of any serious mental disorder.

Research conducted and funded by the National Institute of Mental Health (NIMH) has found that many mental disorders are caused by a combination of biological, environmental, psychological, and genetic factors. In fact, a growing body of research has found that certain genes and gene variations are associated with mental disorders. So what is the best way to “look at your genes” and determine your own personal risk?

Your Family Health History

Your family history is one of your best clues about your risk of developing mental disorders and many other common illnesses. Certain mental illnesses tend to run in families, and having a close relative with a mental disorder could mean you are at a higher risk.

If a family member has a mental disorder, it does not necessarily mean you will develop one. Many other factors also play a role. But knowing your family mental health history can help you determine whether you are at a higher risk for certain disorders, help your doctor recommend actions for reducing your risk, and enable both you and your doctor to look for early warning signs.

To gain a better understanding of your family health history, it may help to:

Talk to Your Blood Relatives

The first step in creating a family health history is to talk to your blood relatives. The most helpful information comes from “first-degree” relatives—parents, brothers and sisters, and children. Information from “second-degree” relatives, such as nieces, nephews, half-brothers, half-sisters, grandparents, aunts, and uncles, can also be helpful.

Don't worry if you cannot get complete information on every relative. Some people may not want to talk. Others may be unable to remember information accurately. That’s okay. Whatever information you can collect will be helpful.

Keep a Record

Free print and online tools can help you create a family health history. One tool is “My Family Health Portrait ” (https://familyhistory.hhs.gov/ ) from the U.S. Surgeon General. It helps organize your family health history information. The following instructions describe how to use the print and online versions of this tool.

You can download and print out “My Family Health Portrait” and use it to record information about your family’s health. Once you fill in the information, you can keep it for your records, share the completed form with your doctor or health care provider, or share it with family members. Learn more at https://familyhistory.hhs.gov/ .

Please note: The Surgeon General’s “My Family Health Portrait” tool does NOT keep a government record of the information you fill in. Your health information is NOT available to anyone else, but you. The tool only provides the software for organizing your information. After you fill in your information, the completed form is available only to you for downloading. After that, it’s up to you whether you want to share the information with other family members or provide it to your health care provider.

As a family grows or family members are diagnosed with health conditions, new or updated information can be added. It may take a little time and effort, but this lasting legacy can improve the health of your family for generations to come.

Talk to a Mental Health Professional

If you have mental illness in your family, you may want to consult with a mental health professional who can help you understand risk factors and preventive factors. The NIMH Help for Mental Illness webpage (www.nimh.nih.gov/findhelp) provides a number of resources for finding immediate help, locating a health care provider or treatment, and participating in clinical trials.

Your Genes

Genes are segments of DNA found in every cell and are passed down from parents to children at conception. Some diseases—such as sickle cell anemia or cystic fibrosis—are caused by genetic mutation(s), or a permanent change in one or more specific genes.

In other diseases, including many brain disorders, gene variants play a role in increasing or decreasing a person’s risk of developing a disease or condition. Research is advancing our understanding of the role of genetics in mental health. Although there are common genetic variants associated with rare disorders like Fragile X  or Rett syndrome , no gene variants can predict with certainty that a person will develop a mental disorder. In most cases, even the genetic variant with the most supporting research raise a person’s risk by only very small amounts. Knowing that you have one of these gene variants won’t tell you nearly as much about your risk as your family history can.

What About Genetic Testing or Genome Scans? Can They Help Predict My Risk of Developing a Mental Disorder?

The short answer to this question is no—not yet.

One day, genetic research may make it possible to provide a more complete picture of a person’s risk of getting a particular mental disorder or to diagnose it, based on his or her genes. For example, recent NIMH-funded research has identified five major mental disorders—autism, attention deficit hyperactivity disorder, bipolar disease, schizophrenia, and major depression—that can share common genetic components. Studies have also found that specific gene variants are associated with a higher risk of certain disorders, such as autism spectrum disorder or schizophrenia.

Although recent studies have begun to identify the genetic markers associated with certain mental disorders and may eventually lead to better screening and more personalized treatment, it is still too early to use genetic tests or genome scans to accurately diagnose or treat mental illness.

Genetic Testing Versus Genome Scans

Traditional Genetic Testing

Doctors order traditional genetic testing for people they think are at high risk of one of the rare diseases for which specific genes are known to be the cause. The results enable patients and their doctors to make informed health care decisions together. There are many different types of genetic tests. Genetic tests can help to:

Identify gene changes that may increase the risk of developing a disease
Diagnose disease
Identify gene changes that are implicated in an already diagnosed disease
Determine the severity of a disease
Guide doctors in deciding on the best medicine or treatment to use for certain individuals
Screen newborn babies for certain treatable conditions
Currently, genetic testing cannot accurately predict your risk of developing a mental health disorder. If a disease runs in your family, your health care professional can tell you if it’s the kind of illness that can be detected through genetic testing. Your health care professional can help you make decisions about whether to be tested and can help you understand test results and their implications.

Genome Scans

Genome scans are different from traditional genetic testing. For a fee, anyone can mail a saliva sample to companies that sell the scan—without a prescription or a health care provider’s advice. Advertisements say that the company then can provide information about a person’s risks of developing specific diseases, based on gene variations.

But here’s one thing genome scans have in common with genetic testing: It’s too early for genome scans to give people a complete picture of their risk of mental illnesses or to be used to diagnose a disorder. Although research is underway, scientists don’t yet know all of the gene variations that contribute to mental illnesses, and those that are known, so far, raise the risk by very small amounts.

You can learn about the various types of genetics tests and genetic counseling by visiting the National Human Genome Research Institute website (www.genome.gov ).

NIMH Research on Genetics

NIMH, a part of the National Institutes of Health (NIH), funds and conducts research to help answer important scientific questions about mental illnesses. Through research, NIMH works to determine what is promising, what helps and why, what doesn’t work, and what is safe.

For example, NIMH’s Office of Genomics Research Coordination and the Human Genetics Branch are currently studying and promoting research on the human genetic variations that contribute to the risk for mood and anxiety disorders such as bipolar disorder and panic disorder, so that better ways to diagnosis and treat these disorders can be developed. For example, in a genome-wide study , a group of scientists identified a stretch of chromosome that is associated with how a person with bipolar disorder responds to a mood-stabilizing medication called lithium. These scientists found that certain genetic traits helped predict how well patients with bipolar disorder would respond to the medication. Findings like these will be important steps towards better screening and personalized treatment. You can learn more about ongoing research efforts by visiting the NIMH website at www.nimh.nih.gov (search term: Genetics).

 

Clinical Research Trials and You: Questions and Answers

What is a clinical trial?

Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat diseases. Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments. The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.

Who participates in clinical trials?

Many different types of people participate in clinical trials. Some are healthy, while others may have illnesses. A healthy volunteer is a person with no known significant health problems who participates in clinical research to test a new drug, device, or intervention. Research procedures with healthy volunteers are designed to develop new knowledge, not to provide direct benefit to study participants.

A patient volunteer has a known health problem and participates in research to better understand, diagnose, treat, or cure that disease or condition. Research procedures with a patient volunteer help develop new knowledge. These procedures may or may not benefit the study participants.

Patient volunteers may be involved in studies similar to those in which healthy volunteers participate. These studies involve drugs, devices, or interventions designed to prevent, treat, or cure a disease. Although these studies may provide direct benefit to patient volunteers, the main aim is to show, by scientific means, the effects and limitations of the experimental treatment. Consequently, some patients serve as controls by not taking the test drug or by receiving test doses of the drug large enough only to show that it is present, but not at a level that can treat the condition. A study’s benefits may be indirect for the volunteers but may help others.

People participate in clinical trials for a variety of reasons. Healthy volunteers say they participate to help others and to contribute to moving science forward. Participants with an illness or disease also participate to help others, but also to possibly receive the newest treatment and to have the additional care and attention from the clinical trial staff. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

All clinical trials have guidelines about who can participate, called inclusion/exclusion criteria. Factors that allow someone to participate in a clinical trial are “inclusion criteria.” Those that exclude or do not allow participation are “exclusion criteria.” These criteria are based on factors such as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. Some research studies seek participants with illnesses or conditions to be studied in the clinical trial, while others need healthy volunteers. Some studies need both types.

Inclusion and exclusion criteria are not used to reject people personally; rather, the criteria are used to identify appropriate participants and keep them safe, and to help ensure that researchers can find new information they need.

What are the benefits and risks of a clinical trial?

Clinical trials involve risks, just as routine medical care and the activities of daily living do. When weighing the risks of research, you can consider two important factors:

the chance of any harm occurring, and
the degree of harm that could result from participating in the study
Most clinical studies pose the risk of minor discomfort, which lasts only a short time. However, some study participants experience complications that require medical attention. In rare cases, participants have been seriously injured or have died of complications resulting from their participation in trials of experimental therapies. The specific risks associated with a research protocol are described in detail in the informed consent document, which participants are asked to read and sign before participating in research. Also, a member of the research team explains the major risks of participating in a study and will answer any questions you have about the study. Before deciding to participate, carefully consider possible risks and benefits.

Potential Benefits

Well-designed and well-executed clinical trials provide the best approach for participants to:

Play an active role in their health care
Gain access to new research treatments before they are widely available
Receive regular and careful medical attention from a research team that includes doctors and other health professionals
Help others by contributing to medical research
Potential Risks

Risks to participating in clinical trials include the following:

There may be unpleasant, serious, or even life-threatening side effects to experimental treatment.
The study may require more time and attention than standard treatment would, including visits to the study site, more blood tests, more treatments, hospital stays, or complex dosage requirements.
If I choose to take part in a clinical trial, how will my safety be protected?

Ethical Guidelines

The goal of clinical research is to develop knowledge that improves human health or increases understanding of human biology. People who participate in clinical research make it possible for this to occur. The path to finding out if a new drug is safe or effective is to test it on patient volunteers. By placing some people at risk of harm for the good of others, clinical research has the potential to exploit patient volunteers. The purpose of ethical guidelines is both to protect patient volunteers and to preserve the integrity of the science. Ethical guidelines in place today were primarily a response to past research abuses.

Informed Consent

Informed consent is the process of learning the key facts about a clinical trial before deciding whether to participate. The process of providing information to participants continues throughout the study. To help someone decide whether to participate, members of the research team explain the details of the study. The research team provides an informed consent document, which includes such details about the study, as its purpose, duration, required procedures, and whom to contact for various purposes. The informed consent document also explains risks and potential benefits.

If the participant decides to enroll in the trial, the informed consent document will be signed. Informed consent is not a contract. Volunteers are free to withdraw from the study at any time.

IRB Review

Most, but not all, clinical trials in the United States are approved and monitored by an Institutional Review Board (IRB) in order to ensure that the risks are minimal and are worth any potential benefits. An IRB is an independent committee that consists of physicians, statisticians, and members of the community who ensure that clinical trials are ethical and that the rights of participants are protected. Potential research participants should ask the sponsor or research coordinator whether the research they are considering participating in was reviewed by an IRB.

What questions should I ask before deciding if I want to take part in a clinical trial?

If you are offered a clinical trial, feel free to ask any questions or bring up any issues concerning the trial at any time. The following suggestions may give you some ideas as you think about your own questions.

The Study

What is the purpose of the study?
Why do researchers think the approach may be effective?
Who will fund the study?
Who has reviewed and approved the study?
How are study results and safety of participants being checked?
How long will the study last?
What will my responsibilities be if I participate?
Possible Risks and Benefits

What are my possible short-term benefits?
What are my possible long-term benefits?
What are my short-term risks, such as side effects?
What are my possible long-term risks?
What other options do people with my disease have?
How do the possible risks and benefits of this trial compare with those options?
Participation and Care

What kinds of therapies, procedures, and/or tests will I have during the trial?
Will they hurt, and if so, for how long?
How do the tests in the study compare with those I would have outside of the trial?
Will I be able to take my regular medications while participating in the clinical trial?
Where will I have my medical care?
Who will be in charge of my care?
Personal Issues

How could being in this study affect my daily life?
Can I talk to other people in the study?
Cost Issues

Will I have to pay for any part of the trial, such as tests or the study drug?
If so, what will the charges likely be?
What is my health insurance likely to cover?
Who can help answer any questions from my insurance company or health plan?
Will there be any travel or child care costs that I need to consider while I am in the trial?
Tips for Asking Your Doctor About Trials

Consider taking a family member or friend along for support and for help in asking questions or recording answers.
Plan ahead what to ask, but don’t hesitate to ask any new questions you think of while you’re there.
Write down your questions in advance to make sure you remember to ask them all.
Write down the answers, so that you can review them whenever you want.
Ask about bringing a tape recorder to record what’s said (even if you write down answers).
Where can I find a mental health clinical trial?

Around the Nation and Worldwide

The National Institutes of Health (NIH), the nation’s medical research agency, conducts clinical research trials for many diseases and conditions, including a variety of mental disorders.

To search for other diseases and conditions, you can visit ClinicalTrials.gov. This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

At the NIH Clinical Center in Bethesda, Maryland

The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders. NIMH is one of the 27 Institutes and Centers that make up the NIH.

Researchers at the NIMH conduct a large number of research studies with patients and healthy volunteers. The studies are conducted at the NIH Clinical Center (CC), a hospital dedicated to the highest quality research and located in Bethesda, Maryland, near Washington, D.C. Some studies enroll locally, others regionally or nationally. Adult, children, and healthy volunteer study descriptions and other information are provided on the NIMH website at http://www.nimh.nih.gov/labs-at-nimh/join-a-study/index.shtml, or visit www.nimh.nih.gov and enter “Join a Study” in the Search box. You can also call 301-496-5645 or email nimhcore@mail.nih.gov.

If you qualify for a study, then a study-related evaluation, treatment, and transportation to NIH (in some cases) are provided without cost to you or your health plan.

What is the next step after I find a clinical trial?

Once you find a study that you might want to join, contact the clinical trial or study coordinator. You can usually find this contact information in the description of the study. The next step is a screening appointment to see if you qualify to participate. This appointment also gives you a chance to ask your questions about the study.

Let your doctor know that you are thinking about joining a clinical trial. He or she may want to talk to the research team about your health to make sure the study is safe for you and to coordinate your care while you are in the study.

This content is brought to you by the National Institutes of Health (NIH).
 

About the National Institute of Mental Health (NIMH)

The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders. NIMH is one of the 27 Institutes and Centers that make up the National Institutes of Health (NIH), the nation’s medical research agency. NIH is part of the U.S. Department of Health and Human Services (HHS).

What is NIMH’s mission?

The mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.

How does NIMH fulfill its mission?

NIMH aims to harness scientific knowledge and tools to achieve better understanding, treatment, and ultimately, prevention of these disabling conditions.

To fulfill its mission, NIMH:

Supports and conducts research on mental illnesses and the underlying basic science of brain and behavior.
Supports the training of scientists to carry out basic and clinical mental health research.
Communicates with scientists, patients, providers, and the general public about the science of mental illnesses.
NIMH’s Strategic Plan for Research includes four Strategic Objectives for the Institute:

Define the mechanisms of complex behaviors.
Chart mental illness trajectories to determine when, where, and how to intervene.
Strive for prevention and cures.
Strengthen the public health impact of NIMH-supported research.
What are NIMH’s major areas of research?

NIMH has four extramural research divisions that support research programs at hospitals and universities throughout the nation:

The Division of Neuroscience and Basic Behavioral Science supports research programs in basic neuroscience, genetics, basic behavioral science, research training, resource and technology development, and drug discovery.
The Division of Translational Research supports translational research on the etiology, pathophysiology, and trajectory of mental illnesses and develops effective interventions for children and adults.
The Division of Services and Intervention Research supports research that evaluates the effectiveness of treatment and preventive mental health interventions and mental health services research.
The Division of AIDS Research supports research on behavioral strategies to stop the spread of HIV/AIDS and research on the mental health effects of HIV/AIDS.
The Division of Extramural Activities supports these major areas of research by providing leadership and advice for extramural programs and policies; providing guidelines for grant applications; and reviewing applications for grants, contracts, and cooperative agreements.

The Division of Intramural Research Programs is the internal research division of NIMH. This division conducts research and trains researchers at the NIH campus in Bethesda, MD.

The NIMH Office of the Director comprises several offices that support Institute-wide research, policy, evaluation, and communication activities:

The Office on AIDS directs and supports research on the biological and behavioral causes of HIV/AIDS infection and more effective mechanisms for the diagnosis, treatment, and prevention of the disease.
The Office of Autism Research Coordination coordinates and manages the Interagency Autism Coordinating Committee (IACC) and related cross-agency autism spectrum disorder (ASD) activities, programs, and policies. The IACC is a federal advisory committee mandated by Congress to coordinate ASD- related activities across HHS.
The Office of Genomics Research Coordination facilitates and promotes research to elucidate genomic risk factors that underlie mental disorders.
The Office for Research of Disparities and Global Mental Health coordinates the Institute’s efforts to reduce disparities in mental health and access to mental health care in the United States and around the world.
The Office of Resource Management directs and coordinates the Institute’s resource allocation and management improvement processes.
The Office of Rural Mental Health Research directs research on the conditions unique to those living in rural areas, including research on the delivery of mental health services in these areas.
The Office of Clinical Research coordinates and oversees NIMH-funded clinical research studies and provides strategic guidance and recommendations to NIMH leadership about initiatives in clinical research.
The Office of Constituency Relations and Public Liaison oversees outreach activities, including gathering public input about NIMH activities; interacting with professional, scientific, and community-based organizations; and handling legislative and congressional issues. Within this office, the Outreach Partnership Program disseminates NIMH-funded science through partnerships with nonprofit organizations in every state, the District of Columbia, and Puerto Rico.
The Office of Science Policy, Planning, and Communications plans and directs a comprehensive strategic agenda for national mental health policy, including science program planning and related policy evaluation, research training and coordination, and technology and information transfer.
The Office of Technology Development and Coordination supports basic and applied research related to the development of scientific tools, technologies, and approaches related to brain and behavioral research, including software, hardware, and wetware (e.g., novel genetic methods or bioactive and molecular imaging agents).

 

Helping Children and Adolescents Cope with Violence and Disasters: What Community Members Can Do

Introduction

Each year, children experience violence and disaster and face other traumas. Young people are injured, they see others harmed by violence, they suffer sexual abuse, and they lose loved ones or witness other tragic and shocking events. Community members—teachers, religious leaders, and other adults—can help children overcome these experiences and start the process of recovery.

What is trauma?

“Trauma” is often thought of as physical injuries. Psychological trauma is an emotionally painful, shocking, stressful, and sometimes life-threatening experience. It may or may not involve physical injuries, and can result from witnessing distressing events. Examples include a natural disaster, physical or sexual abuse, and terrorism.

Disasters such as hurricanes, earthquakes, and floods can claim lives, destroy homes or whole communities, and cause serious physical and psychological injuries. Trauma can also be caused by acts of violence. The September 11, 2001 terrorist attack is one example. Mass shootings in schools or communities and physical or sexual assault are other examples. Traumatic events threaten people’s sense of safety.

Reactions (responses) to trauma can be immediate or delayed. Reactions to trauma differ in severity and cover a wide range of behaviors and responses. Children with existing mental health problems, past traumatic experiences, and/or limited family and social supports may be more reactive to trauma. Frequently experienced responses among children after trauma are loss of trust and a fear of the event happening again.

It’s important to remember:

Children’s reactions to trauma are strongly influenced by adults’ responses to trauma.
People from different cultures may have their own ways of reacting to trauma.
Commonly experienced responses to trauma among children:

Children age 5 and under may react in a number of ways including:

Showing signs of fear
Clinging to parent or caregiver
Crying or screaming
Whimpering or trembling
Moving aimlessly
Becoming immobile
Returning to behaviors common to being younger
Thumbsucking
Bedwetting
Being afraid of the dark.
Children age 6 to 11 may react by:

Isolating themselves
Becoming quiet around friends, family, and teachers
Having nightmares or other sleep problems
Refusing to go to bed
Becoming irritable or disruptive
Having outbursts of anger
Starting fights
Being unable to concentrate
Refusing to go to school
Complaining of physical problems
Developing unfounded fears
Becoming depressed
Expressing guilt over what happened
Feeling numb emotionally
Doing poorly with school and homework
Loss of interest in fun activities.
Adolescents age 12 to 17 may react by:

Having flashbacks to the event (flashbacks are the mind reliving the event)
Having nightmares or other sleep problems
Avoiding reminders of the event
Using or abusing drugs, alcohol, or tobacco
Being disruptive, disrespectful, or behaving destructively
Having physical complaints
Feeling isolated or confused
Being depressed
Being angry
Loss of interest in fun activities
Having suicidal thoughts.
Adolescents may feel guilty. They may feel guilt for not preventing injury or deaths. They also may have thoughts of revenge.

What can community members do following a traumatic event?

Community members play important roles by helping children who experience violence or disaster. They help children cope with trauma and protect them from further trauma exposure.

It is important to remember:

Children should be allowed to express their feelings and discuss the event, but not be forced.
Community members should identify and address their own feelings; this may allow them to help others more effectively.
Community members can also use their buildings and institutions as gathering places to promote support.
Community members can help people identify resources and emphasize community strengths and resources that sustain hope.
Community members need to be sensitive to:

Difficult behavior
Strong emotions
Different cultural responses.
Community members can help in finding mental health professionals to:

Counsel children
Help them see that fears are normal
Offer play therapy
Offer art therapy
Help children develop coping skills, problem-solving skills, and ways to deal with fear.
Finally, community members can hold parent meetings to discuss the event, their child’s response, how help is being given to their child, how parents can help their child, and other available support.

How can adults help children and adolescents who experienced trauma?

Helping children can start immediately, even at the scene of the event. Most children recover within a few weeks of a traumatic experience, while some may need help longer. Grief, a deep emotional response to loss, may take months to resolve. Children may experience grief over the loss of a loved one, teacher, friend, or pet. Grief may be re-experienced or worsened by news reports or the event’s anniversary.

Some children may need help from a mental health professional. Some people may seek other kinds of help from community leaders. Identify children who need support and help them obtain it.

Examples of problematic behaviors could be:

Refusal to go places that remind them of the event
Emotional numbness
Dangerous behavior
Unexplained anger/rage
Sleep problems including nightmares.
Adult helpers should:

Pay attention to children

Listen to them
Accept/do not argue about their feelings
Help them cope with the reality of their experiences.
Reduce effects of other stressors, such as

Frequent moving or changes in place of residence
Long periods away from family and friends
Pressures to perform well in school
Transportation problems
Fighting within the family
Being hungry.
Monitor healing

It takes time
Do not ignore severe reactions
Pay attention to sudden changes in behaviors, speech, language use, or in strong emotions.
Remind children that adults

Love them
Support them
Will be with them when possible.
Help for all people in the first days and weeks

There are steps adults can take following a disaster that can help them cope, making it easier to provide better care for children. These include creating safe conditions, remaining calm and friendly, and connecting with others. Being sensitive to people under stress and respecting their decisions is important.

When possible, help people:

Get food
Get a safe place to live
Get help from a doctor or nurse if hurt
Contact loved ones or friends
Keep children with parents or relatives
Understand what happened
Understand what is being done
Know where to get help
Don’t:

Force people to tell their stories
Probe for personal details
Say things like “everything will be OK,” or “at least you survived”
Say what you think people should feel or how people should have acted
Say people suffered because they deserved it
Be negative about available help
Make promises that you can’t keep such as “you will go home soon.”
More about trauma and stress

Some children will have prolonged mental health problems after a traumatic event. These may include grief, depression, anxiety, and post-traumatic stress disorder (PTSD). Some trauma survivors get better with some support. Others may need prolonged care by a mental health professional. If after a month in a safe environment, children are not able to perform their normal routines or new behavioral or emotional problems develop, then contact a health professional.

Factors influencing how one may respond to trauma include:

Being directly involved in the trauma, especially as a victim
Severe and/or prolonged exposure to the event
Personal history of prior trauma
Family or personal history of mental illness and severe behavioral problems
Limited social support; lack of caring family and friends
On-going life stressors such as moving to a new home, or new school, divorce, job change, or financial troubles.
Some symptoms may require immediate attention. Contact a mental health professional if these symptoms occur:

Flashbacks
Racing heart and sweating
Being easily startled
Being emotionally numb
Being very sad or depressed
Thoughts or actions to end one’s life.

 

Helping Children and Adolescents Cope with Violence and Disasters: What Parents Can Do

Each year, children experience violence and disaster and face other traumas. Young people are injured, they see others harmed by violence, they suffer sexual abuse, and they lose loved ones or witness other tragic and shocking events. Parents and caregivers can help children overcome these experiences and start the process of recovery.

What is trauma?

“Trauma” is often thought of as physical injuries. Psychological trauma is an emotionally painful, shocking, stressful, and sometimes life-threatening experience. It may or may not involve physical injuries, and can result from witnessing distressing events. Examples include a natural disaster, physical or sexual abuse, and terrorism.

Disasters such as hurricanes, earthquakes, and floods can claim lives, destroy homes or whole communities, and cause serious physical and psychological injuries. Trauma can also be caused by acts of violence. The September 11, 2001 terrorist attack is one example. Mass shootings in schools or communities and physical or sexual assault are other examples. Traumatic events threaten our sense of safety.

Reactions (responses) to trauma can be immediate or delayed. Reactions to trauma differ in severity and cover a wide range of behaviors and responses. Children with existing mental health problems, past traumatic experiences, and/or limited family and social supports may be more reactive to trauma. Frequently experienced responses among children after trauma are loss of trust and a fear of the event happening again.

It’s important to remember:

Children’s reactions to trauma are strongly influenced by adults’ responses to trauma.
People from different cultures may have their own ways of reacting to trauma.
Commonly experienced responses to trauma among children:

Children age 5 and under may react in a number of ways including:

Showing signs of fear
Clinging to parent or caregiver
Crying or screaming
Whimpering or trembling
Moving aimlessly
Becoming immobile
Returning to behaviors common to being younger
Thumbsucking
Bedwetting
Being afraid of the dark.
Children age 6 to 11 may react by:

Isolating themselves
Becoming quiet around friends, family, and teachers
Having nightmares or other sleep problems
Refusing to go to bed
Becoming irritable or disruptive
Having outbursts of anger
Starting fights
Being unable to concentrate
Refusing to go to school
Complaining of physical problems
Developing unfounded fears
Becoming depressed
Expressing guilt over what happened
Feeling numb emotionally
Doing poorly with school and homework
Losing interest in fun activities.
Adolescents age 12 to 17 may react by:

Having flashbacks to the event (flashbacks are the mind reliving the event)
Having nightmares or other sleep problems
Avoiding reminders of the event
Using or abusing drugs, alcohol, or tobacco
Being disruptive, disrespectful, or behaving destructively
Having physical complaints
Feeling isolated or confused
Being depressed
Being angry
Losing interest in fun activities
Having suicidal thoughts.
Adolescents may feel guilty. They may feel guilt for not preventing injury or deaths. They also may have thoughts of revenge.

What can parents do to help?

After violence or disaster, parents and family members should identify and address their own feelings — this will allow them to help others. Explain to children what happened and let them know:

You love them
The event was not their fault
You will do your best to take care of them
It’s okay for them to feel upset.
Do:

Allow children to cry
Allow sadness
Let children talk about feelings
Let them write about feelings
Let them draw pictures about the event or their feelings.
Don’t:

Expect children to be brave or tough
Make children discuss the event before they are ready
Get angry if children show strong emotions
Get upset if they begin bedwetting, acting out, or thumbsucking.
Other tips:

If children have trouble sleeping give them extra attention, let them sleep with a light on, or let them sleep in your room (for a short time).
Try to keep normal routines, for example, reading bedtime stories, eating dinner together, watching TV together, reading books, exercising, or playing games. If you can’t keep normal routines, make new ones together.
Help children feel in control when possible by letting them choose meals, pick out clothes, or make some decisions for themselves.
How can I help young children who experienced trauma?

Helping children can start immediately, even at the scene of the event. Most children recover within a few weeks of a traumatic experience, while some may need help longer. Grief, a deep emotional response to loss, may take months to resolve. Children may experience grief over the loss of a loved one, teacher, friend, or pet. Grief may be re-experienced or worsened by news reports or the event’s anniversary.

Some children may need help from a mental health professional. Some people may seek other kinds of help from community leaders. Identify children who need support and help them obtain it.

Examples of problematic behaviors could be:

Refusing to go to places that remind them of the event
Emotional numbness
Behaving dangerously
Unexplained anger/rage
Sleep problems including nightmares.
Adult helpers should:

Pay attention to children

Listen to them
Accept/do not argue about their feelings
Help them cope with the reality of their experiences.
Reduce effects of other stressors, such as

Frequent moving or changes in place of residence
Long periods away from family and friends
Pressures to perform well in school
Transportation problems
Fighting within the family
Being hungry.
Monitor healing

It takes time
Do not ignore severe reactions
Pay attention to sudden changes in behaviors, speech, language use, or strong emotions.
Remind children that adults

Love them
Support them
Will be with them when possible.
Parents and caregivers should also limit viewing of repetitive news reports about traumatic events. Young children may not understand that news coverage is about one event and not multiple similar events.

Help for all people in the first days and weeks

There are steps adults can take following a disaster that can help them cope, making it easier for them to provide better care for children. These include creating safe conditions, remaining calm and friendly, and connecting with others. Being sensitive to people under stress and respecting their decisions is important.

When possible, help people:

Get food
Get a safe place to live
Get help from a doctor or nurse if hurt
Contact loved ones or friends
Keep children with parents or relatives
Understand what happened
Understand what is being done
Know where to get help.
Don’t:

Force people to tell their stories
Probe for personal details
Say things like “everything will be OK,” or “at least you survived”
Say what you think people should feel or how people should have acted
Say people suffered because they deserved it
Be negative about available help
Make promises that you can’t keep such as “you will go home soon.”
More about trauma stress

Some children will have prolonged mental health problems after a traumatic event. These may include grief, depression, anxiety, and post-traumatic stress disorder (PTSD). Some trauma survivors get better with some support. Others may need prolonged care from a mental health professional. If after a month in a safe environment children are not able to perform normal routines or new behavioral or emotional problems develop, then contact a health professional.

Factors influencing how someone may respond include:

Being directly involved in the trauma, especially as a victim
Severe and/or prolonged exposure to the event
Personal history of prior trauma
Family or personal history of mental illness and severe behavioral problems
Limited social support; lack of caring family and friends
Ongoing life stressors such as moving to a new home or new school, divorce, job change, or financial troubles.
Some symptoms may require immediate attention. Contact a mental health professional if these symptoms occur:

Flashbacks
Racing heart and sweating
Being easily startled
Being emotionally numb
Being very sad or depressed
Thoughts or actions to end one’s life.

Helping Children and Adolescents Cope with Violence and Disasters: What Rescue Workers Can Do

Introduction

Each year, children experience violence and disaster and face other traumas. Young people are injured, they see others harmed by violence, they suffer sexual abuse, and they lose loved ones or witness other tragic and shocking events. Rescue workers including police, fire, and other first responders can help children overcome these experiences and start the process of recovery.

What is trauma?

“Trauma” is often thought of as physical injuries. Psychological trauma is an emotionally painful, shocking, stressful, and sometimes life-threatening experience. It may or may not involve physical injuries, and can result from witnessing distressing events. Examples include a natural disaster, physical or sexual abuse, and terrorism.

Disasters such as hurricanes, earthquakes, and floods can claim lives, destroy homes or whole communities, and cause serious physical and psychological injuries. Trauma can also be caused by acts of violence. The September 11, 2001 terrorist attack is one example. Mass shootings in schools or communities and physical or sexual assault are other examples. Traumatic events threaten people’s sense of safety.

Reactions (responses) to trauma can be immediate or delayed. Reactions to trauma differ in severity and cover a wide range of behaviors and responses. Children with existing mental health problems, past traumatic experiences, and/or limited family and social supports may be more reactive to trauma. Frequently experienced responses among children after trauma are loss of trust and a fear of the event happening again.

It’s important to remember:

Children’s reactions to trauma are strongly influenced by adults’ responses to trauma.
People from different cultures may have their own ways of reacting to trauma.
Commonly experienced responses to trauma among children:

Children age 5 and under may react in a number of ways including:

Showing signs of fear
Clinging to parent or caregiver
Crying or screaming
Whimpering or trembling
Moving aimlessly
Becoming immobile
Returning to behaviors common to being younger
Thumbsucking
Bedwetting
Being afraid of the dark.
Children age 6 to 11 may react by:

Isolating themselves
Becoming quiet around friends, family, and teachers
Having nightmares or other sleep problems
Refusing to go to bed
Becoming irritable or disruptive
Having outbursts of anger
Starting fights
Being unable to concentrate
Refusing to go to school
Complaining of physical problems
Developing unfounded fears
Becoming depressed
Expressing guilt over what happened
Feeling numb emotionally
Doing poorly with school and homework
Losing interest in fun activities.
Adolescents age 12 to 17 may react by:

Having flashbacks to the event (flashbacks are the mind reliving the event)
Having nightmares or other sleep problems
Avoiding reminders of the event
Using or abusing drugs, alcohol, or tobacco
Being disruptive, disrespectful, or behaving destructively
Having physical complaints
Feeling isolated or confused
Being depressed
Being angry
Losing interest in fun activities
Having suicidal thoughts.
Adolescents may feel guilty. They may feel guilt for not preventing injury or deaths. They also may have thoughts of revenge.

What can rescue workers do to help?

After violence or disaster, rescue workers should protect children from:

Further harm
Traumatic sights and sounds
Onlookers and media.
Rescue workers should also be kind but firm in directing children away from the event site and injured survivors. They should try to keep children together with family and friends.

Rescue workers can help identify children in acute distress and stay with them until they are calm. Signs of acute distress include:

Trembling
Rambling
Becoming mute
Exhibiting erratic behavior such as loud crying, rage, or sitting completely still or frozen.
Rescue workers should be tolerant of difficult behavior and strong emotions. Supportive acts that help children feel safe are a quick hug or a reassuring word.

How can adults help children and adolescents who experienced trauma?

Helping children can start immediately, even at the scene of the event. Most children recover within a few weeks of a traumatic experience, while some may need help longer. Grief, a deep emotional response to loss, may take months to resolve. Children may experience grief over the loss of a loved one, teacher, friend, or pet. Grief may be re-experienced or worsened by news reports or the event’s anniversary.

Some children may need help from a mental health professional. Some people may seek other kinds of help from community leaders. Identify children who need support and help them obtain it.

Examples of problematic behaviors could be:

Refusal to go places that remind them of the event
Emotional numbness
Dangerous behavior
Unexplained anger/rage
Sleep problems including nightmares.
Adult helpers should:

Pay attention to children

Listen to them
Accept/do not argue about their feelings
Help them cope with the reality of their experiences.
Reduce effects of other stressors, such as

Frequent moving or changes in place of residence
Long periods away from family and friends
Pressures to perform well at school
Transportation problems
Fighting within the family
Being hungry.
Monitor healing

It takes time
Do not ignore severe reactions
Pay attention to sudden changes in behaviors, speech, language use, or in strong emotions.
Remind children that adults

Love them
Support them
Will be with them when possible.
Help for all people in the first days and weeks

There are steps adults can take following a disaster that can help them cope, making it easier for them to provide better care for children. These include creating safe conditions, remaining calm and friendly, and connecting with others. Being sensitive to people under stress and respecting their decisions is important.

When possible, help people:

Get food
Get a safe place to live
Get help from a doctor or nurse if hurt
Contact loved ones or friends
Keep children with parents or relatives
Understand what happened
Understand what is being done
Know where to get help.
Don’t:

Force people to tell their stories
Probe for personal details
Say things like “everything will be OK,” or “at least you survived”
Say what you think people should feel or how people should have acted
Say people suffered because they deserved it
Be negative about available help
Make promises that you can’t keep such as “you will go home soon.”
More about trauma and stress

Some children will have prolonged mental health problems after a traumatic event. These may include grief, depression, anxiety, and post-traumatic stress disorder (PTSD). Some trauma survivors get better with some support. Others may need prolonged care by a mental health professional. If after a month in a safe environment children are not able to perform their normal routines or new behavioral or emotional problems develop, then contact a health professional.

Factors influencing how one may respond include:

Being directly involved in the trauma, especially as a victim
Severe and/or prolonged exposure to the event
Personal history of prior trauma
Family or personal history of mental illness and severe behavioral problems
Limited social support; lack of caring family and friends
Ongoing life stressors such as moving to a new home or new school, divorce, job change, or financial troubles.
Some symptoms may require immediate attention. Contact a mental health professional if these symptoms occur:

Flashbacks
Racing heart and sweating
Being easily startled
Being emotionally numb
Being very sad or depressed

Thoughts or actions to end one’s life.

Eating Disorders
Autism Spectrum
Personality Disorders
Psychotic Disorders
ADHD 

 

Eating Disorders

Definition

There is a commonly held view that eating disorders are a lifestyle choice. Eating disorders are actually serious and often fatal illnesses that cause severe disturbances to a person’s eating behaviors. Obsessions with food, body weight, and shape may also signal an eating disorder. Common eating disorders include anorexia nervosa, bulimia nervosa, and binge-eating disorder.

Signs and Symptoms

Anorexia nervosa

People with anorexia nervosa may see themselves as overweight, even when they are dangerously underweight. People with anorexia nervosa typically weigh themselves repeatedly, severely restrict the amount of food they eat, and eat very small quantities of only certain foods. Anorexia nervosa has the highest mortality rate of any mental disorder. While many young women and men with this disorder die from complications associated with starvation, others die of suicide. In women, suicide is much more common in those with anorexia than with most other mental disorders.

Symptoms include:

Extremely restricted eating
Extreme thinness (emaciation)
A relentless pursuit of thinness and unwillingness to maintain a normal or healthy weight
Intense fear of gaining weight
Distorted body image, a self-esteem that is heavily influenced by perceptions of body weight and shape, or a denial of the seriousness of low body weight
Other symptoms may develop over time, including:

Thinning of the bones (osteopenia or osteoporosis)
Mild anemia and muscle wasting and weakness
Brittle hair and nails
Dry and yellowish skin
Growth of fine hair all over the body (lanugo)
Severe constipation
Low blood pressure, slowed breathing and pulse
Damage to the structure and function of the heart
Brain damage
Multiorgan failure
Drop in internal body temperature, causing a person to feel cold all the time
Lethargy, sluggishness, or feeling tired all the time
Infertility
Bulimia nervosa

People with bulimia nervosa have recurrent and frequent episodes of eating unusually large amounts of food and feeling a lack of control over these episodes. This binge-eating is followed by behavior that compensates for the overeating such as forced vomiting, excessive use of laxatives or diuretics, fasting, excessive exercise, or a combination of these behaviors. Unlike anorexia nervosa, people with bulimia nervosa usually maintain what is considered a healthy or relatively normal weight.

Symptoms include:

Chronically inflamed and sore throat
Swollen salivary glands in the neck and jaw area
Worn tooth enamel and increasingly sensitive and decaying teeth as a result of exposure to stomach acid
Acid reflux disorder and other gastrointestinal problems
Intestinal distress and irritation from laxative abuse
Severe dehydration from purging of fluids
Electrolyte imbalance (too low or too high levels of sodium, calcium, potassium and other minerals) which can lead to stroke or heart attack
Binge-eating disorder

People with binge-eating disorder lose control over his or her eating. Unlike bulimia nervosa, periods of binge-eating are not followed by purging, excessive exercise, or fasting. As a result, people with binge-eating disorder often are overweight or obese. Binge-eating disorder is the most common eating disorder in the U.S.

Symptoms include:

Eating unusually large amounts of food in a specific amount of time
Eating even when you're full or not hungry
Eating fast during binge episodes
Eating until you're uncomfortably full
Eating alone or in secret to avoid embarrassment
Feeling distressed, ashamed, or guilty about your eating
Frequently dieting, possibly without weight loss
Risk Factors

Eating disorders frequently appear during the teen years or young adulthood but may also develop during childhood or later in life. These disorders affect both genders, although rates among women are 2½ times greater than among men. Like women who have eating disorders, men also have a distorted sense of body image. For example, men may have muscle dysmorphia, a type of disorder marked by an extreme concern with becoming more muscular.

Researchers are finding that eating disorders are caused by a complex interaction of genetic, biological, behavioral, psychological, and social factors. Researchers are using the latest technology and science to better understand eating disorders.

One approach involves the study of human genes. Eating disorders run in families. Researchers are working to identify DNA variations that are linked to the increased risk of developing eating disorders.

Brain imaging studies are also providing a better understanding of eating disorders. For example, researchers have found differences in patterns of brain activity in women with eating disorders in comparison with healthy women. This kind of research can help guide the development of new means of diagnosis and treatment of eating disorders.

Treatments and Therapies

Adequate nutrition, reducing excessive exercise, and stopping purging behaviors are the foundations of treatment. Treatment plans are tailored to individual needs and may include one or more of the following:

Individual, group, and/or family psychotherapy
Medical care and monitoring
Nutritional counseling
Medications
Psychotherapies

Psychotherapies such as a family-based therapy called the Maudsley approach, where parents of adolescents with anorexia nervosa assume responsibility for feeding their child, appear to be very effective in helping people gain weight and improve eating habits and moods.

To reduce or eliminate binge-eating and purging behaviors, people may undergo cognitive behavioral therapy (CBT), which is another type of psychotherapy that helps a person learn how to identify distorted or unhelpful thinking patterns and recognize and change inaccurate beliefs.

Medications

Evidence also suggests that medications such as antidepressants, antipsychotics, or mood stabilizers approved by the U.S. Food and Drug Administration (FDA) may also be helpful for treating eating disorders and other co-occurring illnesses such as anxiety or depression. Check the FDA’s website: (http://www.fda.gov/ ), for the latest information on warnings, patient medication guides, or newly approved medications.

Eating Disorders: About More Than Food

What are eating disorders?

The eating disorders anorexia nervosa, bulimia nervosa, and binge-eating disorder, and their variants, all feature serious disturbances in eating behavior and weight regulation. They are associated with a wide range of adverse psychological, physical, and social consequences. A person with an eating disorder may start out just eating smaller or larger amounts of food, but at some point, their urge to eat less or more spirals out of control. Severe distress or concern about body weight or shape, or extreme efforts to manage weight or food intake, also may characterize an eating disorder.

Eating disorders are real, treatable medical illnesses. They frequently coexist with other illnesses such as depression, substance abuse, or anxiety disorders. Other symptoms can become life-threatening if a person does not receive treatment, which is reflected by anorexia being associated with the highest mortality rate of any psychiatric disorder.

Eating disorders affect both genders, although rates among women and girls are 2½ times greater than among men and boys. Eating disorders frequently appear during the teen years or young adulthood but also may develop during childhood or later in life.

What are the different types of eating disorders?

Anorexia nervosa

Many people with anorexia nervosa see themselves as overweight, even when they are clearly underweight. Eating, food, and weight control become obsessions. People with anorexia nervosa typically weigh themselves repeatedly, portion food carefully, and eat very small quantities of only certain foods. Some people with anorexia nervosa also may engage in binge eating followed by extreme dieting, excessive exercise, self-induced vomiting, or misuse of laxatives, diuretics, or enemas.

Symptoms of anorexia nervosa include:

Extremely low body weight
Severe food restriction
Relentless pursuit of thinness and unwillingness to maintain a normal or healthy weight
Intense fear of gaining weight
Distorted body image and self-esteem that is heavily influenced by perceptions of body weight and shape, or a denial of the seriousness of low body weight
Lack of menstruation among girls and women.
Some who have anorexia nervosa recover with treatment after only one episode. Others get well but have relapses. Still others have a more chronic, or long-lasting, form of anorexia nervosa, in which their health declines as they battle the illness.

Other symptoms and medical complications may develop over time, including:

Thinning of the bones (osteopenia or osteoporosis)
Brittle hair and nails
Dry and yellowish skin
Growth of fine hair all over the body (lanugo)
Mild anemia, muscle wasting, and weakness
Severe constipation
Low blood pressure, or slowed breathing and pulse
Damage to the structure and function of the heart
Brain damage
Multi-organ failure
Drop in internal body temperature, causing a person to feel cold all the time
Lethargy, sluggishness, or feeling tired all the time
Infertility.
Bulimia nervosa

People with bulimia nervosa have recurrent and frequent episodes of eating unusually large amounts of food and feel a lack of control over these episodes. This binge eating is followed by behavior that compensates for the overeating such as forced vomiting, excessive use of laxatives or diuretics, fasting, excessive exercise, or a combination of these behaviors.

Unlike anorexia nervosa, people with bulimia nervosa usually maintain what is considered a healthy or normal weight, while some are slightly overweight. But like people with anorexia nervosa, they often fear gaining weight, want desperately to lose weight, and are intensely unhappy with their body size and shape. Usually, bulimic behavior is done secretly because it is often accompanied by feelings of disgust or shame. The binge eating and purging cycle can happen anywhere from several times a week to many times a day.

Other symptoms include:

Chronically inflamed and sore throat
Swollen salivary glands in the neck and jaw area
Worn tooth enamel, and increasingly sensitive and decaying teeth as a result of exposure to stomach acid
Acid reflux disorder and other gastrointestinal problems
Intestinal distress and irritation from laxative abuse
Severe dehydration from purging of fluids
Electrolyte imbalance—too low or too high levels of sodium, calcium, potassium, and other minerals that can lead to a heart attack or stroke.
Binge-eating disorder

People with binge-eating disorder lose control over their eating. Unlike bulimia nervosa, periods of binge eating are not followed by compensatory behaviors like purging, excessive exercise, or fasting. As a result, people with binge-eating disorder often are overweight or obese. People with binge-eating disorder who are obese are at higher risk for developing cardiovascular disease and high blood pressure. They also experience guilt, shame, and distress about their binge eating, which can lead to more binge eating.

How are eating disorders treated?

Typical treatment goals include restoring adequate nutrition, bringing weight to a healthy level, reducing excessive exercise, and stopping binging and purging behaviors. Specific forms of psychotherapy, or talk therapy—including a family-based therapy called the Maudsley approach and cognitive behavioral approaches—have been shown to be useful for treating specific eating disorders. Evidence also suggests that antidepressant medications approved by the U.S. Food and Drug Administration may help for bulimia nervosa and also may be effective for treating co-occurring anxiety or depression for other eating disorders.

Treatment plans often are tailored to individual needs and may include one or more of the following:

Individual, group, or family psychotherapy
Medical care and monitoring
Nutritional counseling
Medications (for example, antidepressants).
Some patients also may need to be hospitalized to treat problems caused by malnutrition or to ensure they eat enough if they are very underweight. Complete recovery is possible.

What is being done to better understand and treat eating disorders?

Researchers are finding that eating disorders are caused by a complex interaction of genetic, biological, psychological, and social factors. But many questions still need answers. Researchers are studying questions about behavior, genetics, and brain function to better understand risk factors, identify biological markers, and develop specific psychotherapies and medications that can target areas in the brain that control eating behavior. Brain imaging and genetic studies may provide clues for how each person may respond to specific treatments for these medical illnesses. Ongoing efforts also are aimed at developing and refining strategies for preventing and treating eating disorders among adolescents and adults.

 

Autism Spectrum

Autism Spectrum Disorder

Learn the signs and ask for help if you’re concerned.

What is autism spectrum disorder?

Autism spectrum disorder (ASD) is a term for a group of developmental disorders described by:

Lasting problems with social communication and social interaction in different settings
Repetitive behaviors and/or not wanting any change in daily routines
Symptoms that begin in early childhood, usually in the first 2 years of life
Symptoms that cause the person to need help in his or her daily life
The term “spectrum” refers to the wide range of symptoms, strengths, and levels of impairment that people with ASD can have. The diagnosis of ASD now includes these other conditions:

Autistic disorder
Asperger’s syndrome
Pervasive developmental disorder not otherwise specified
Although ASD begins in early development, it can last throughout a person’s lifetime.

What are the signs and symptoms of ASD?

Not all people with ASD will show all of these behaviors, but most will show several.

People with ASD may:

Repeat certain behaviors or have unusual behaviors
Have overly focused interests, such as with moving objects or parts of objects
Have a lasting, intense interest in certain topics, such as numbers, details, or facts
Be upset by a slight change in a routine or being placed in a new or overstimulating setting
Make little or inconsistent eye contact
Tend to look and listen less to people in their environment
Rarely seek to share their enjoyment of objects or activities by pointing or showing things to others
Respond unusually when others show anger, distress, or affection
Fail or be slow to respond to their name or other verbal attempts to gain their attention
Have difficulties with the back and forth of conversations
Often talk at length about a favorite subject but won’t allow anyone else a chance to respond or notice when others react indifferently
Repeat words or phrases that they hear, a behavior called echolalia
Use words that seem odd, out of place, or have a special meaning known only to those familiar with that person’s way of communicating
Have facial expressions, movements, and gestures that do not match what they are saying
Have an unusual tone of voice that may sound sing-song or flat and robot-like
Have trouble understanding another person’s point of view, leaving him or her unable to predict or understand other people’s actions
People with ASD may have other difficulties, such as sensory sensitivity (being sensitive to light, noise, textures of clothing, or temperature), sleep problems, digestion problems, and irritability.

People with ASD can also have many strengths and abilities. For instance, people with ASD may:

Have above-average intelligence
Be able to learn things in detail and remember information for long periods of time
Be strong visual and auditory learners
Excel in math, science, music, and art
Noticing ASD in Young Children

Some babies with ASD may seem different very early in their development. Others may seem to develop typically until the second or even third year of life, but then parents start to see problems. Learn more about developmental milestones that young children should reach at www.cdc.gov/ncbddd/actearly/milestones .

How is ASD diagnosed?

Doctors diagnose ASD by looking at a child’s behavior and development. Young children with ASD can usually be reliably diagnosed by age 2.

Older children and adolescents should be screened for ASD when a parent or teacher raises concerns based on observations of the child’s social, communicative, and play behaviors.

Diagnosing ASD in adults is not easy. In adults, some ASD symptoms can overlap with symptoms of other mental health disorders, such as schizophrenia or attention deficit hyperactivity disorder (ADHD). However, getting a correct diagnosis of ASD as an adult can help a person understand past difficulties, identify his or her strengths, and obtain the right kind of help.

Diagnosis in Young Children

Diagnosis in young children is often a two-stage process:

General Developmental Screening During Well-Child Checkups

Every child should receive well-child check-ups with a pediatrician or an early childhood health care provider. Specific ASD screening should be done at the 18- and 24-month visits.

Earlier screening might be needed if a child is at high risk for ASD or developmental problems. Those at high risk include those who:

Have a sister, brother, or other family member with ASD
Have some ASD behaviors
Were born premature, or early, and at a low birth weight
Parents’ experiences and concerns are very important in the screening process for young children. Sometimes the doctor will ask parents questions about the child’s behaviors and combine this information with his or her observations of the child. Read more about screening instruments at www.cdc.gov/ncbddd/autism/hcp-screening.html .

Children who show some developmental problems during this screening process will be referred for another stage of evaluation.

Additional Evaluation

This evaluation is with a team of doctors and other health professionals with a wide range of specialties who are experienced in diagnosing ASD. This team may include:

A developmental pediatrician—a doctor who has special training in child development
A child psychologist and/or child psychiatrist—a doctor who knows about brain development and behavior
A speech-language pathologist—a health professional who has special training in communication difficulties
The evaluation may assess:

Cognitive level or thinking skills
Language abilities
Age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting
Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include:

Blood tests
A hearing test
The outcome of the evaluation will result in recommendations to help plan for treatment.

Diagnosis in older children and adolescents

Older children who begin showing symptoms of ASD after starting school are often first recognized and evaluated by the school’s special education team and can be referred to a health care professional. Parents may talk with their child’s pediatrician about their child’s difficulties with social interaction, including problems with subtle communication, such as understanding tone of voice or facial expressions, body language, and lack of understanding of figures of speech, humor, or sarcasm. Parents may also find that their child has trouble forming friendships with peers. At this point, the pediatrician or a child psychologist or psychiatrist who has expertise in ASD can screen the child and refer the family for further evaluation and treatment.

Diagnosis in adults

Adults who notice the signs and symptoms of ASD should talk with a doctor and ask for a referral for an ASD evaluation. While testing for ASD in adults is still being refined, adults can be referred to a psychologist or psychiatrist with ASD expertise. The expert will ask about concerns, such as social interaction and communication challenges, sensory issues, repetitive behaviors, and restricted interests. Information about the adult’s developmental history will help in making an accurate diagnosis, so an ASD evaluation may include talking with parents or other family members.

What are the treatments for ASD?

Treating ASD early and getting proper care can reduce a person’s difficulties and increase his or her ability to maximize strengths and learn new skills. While there is no single best treatment for ASD, working closely with the doctor is an important part of finding the right treatment program.

Medications

There are a few classes of medications that doctors may use to treat some difficulties that are common with ASD. With medication, a person with ASD may have fewer problems with:

Irritability
Aggression
Repetitive behaviors
Hyperactivity
Attention problems
Anxiety and depression
Read more about the latest news and information on medication warnings, patient medication guides, or newly approved medications at the Food and Drug Administration’s (FDA) web site at www.fda.gov .

Who is affected by ASD?

ASD affects many people, and it has become more commonly diagnosed in recent years. More boys than girls receive an ASD diagnosis.

What causes ASD?

Scientists don’t know the exact causes of ASD, but research suggests that genes and environment play important roles.

Researchers are starting to identify genes that may increase the risk for ASD.
ASD occurs more often in people who have certain genetic conditions, such as Fragile X syndrome or tuberous sclerosis.
Many researchers are focusing on how genes interact with each other and with environmental factors, such as family medical conditions, parental age and other demographic factors, and complications during birth or pregnancy.
Currently, no scientific studies have linked ASD and vaccines.

 

Autism Spectrum Disorder

Definition

Autism spectrum disorder (ASD) is the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.

People with ASD often have these characteristics:

Ongoing social problems that include difficulty communicating and interacting with others
Repetitive behaviors as well as limited interests or activities
Symptoms that typically are recognized in the first two years of life
Symptoms that hurt the individual’s ability to function socially, at school or work, or other areas of life
Some people are mildly impaired by their symptoms, while others are severely disabled. Treatments and services can improve a person’s symptoms and ability to function. Families with concerns should talk to their pediatrician about what they’ve observed and the possibility of ASD screening. According to the Centers for Disease Control and Prevention (CDC)  around 1 in 68 children has been identified with some form of ASD.

What is the difference between Asperger’s syndrome and ASD?

In the past, Asperger’s syndrome and Autistic Disorder were separate disorders. They were listed as subcategories within the diagnosis of “Pervasive Developmental Disorders.” However, this separation has changed. The latest edition of the manual from the American Psychiatric Association, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), does not highlight subcategories of a larger disorder. The manual includes the range of characteristics and severity within one category. People whose symptoms were previously diagnosed as Asperger’s syndrome or Autistic Disorder are now included as part of the category called Autism Spectrum Disorder (ASD).

Signs and Symptoms

Parents or doctors may first identify ASD behaviors in infants and toddlers. School staff may recognize these behaviors in older children. Not all people with ASD will show all of these behaviors, but most will show several. There are two main types of behaviors: “restricted / repetitive behaviors” and “social communication / interaction behaviors.”

Restrictive / repetitive behaviors may include:

Repeating certain behaviors or having unusual behaviors
Having overly focused interests, such as with moving objects or parts of objects
Having a lasting, intense interest in certain topics, such as numbers, details, or facts.
Social communication / interaction behaviors may include:

Getting upset by a slight change in a routine or being placed in a new or overly stimulating setting
Making little or inconsistent eye contact
Having a tendency to look at and listen to other people less often
Rarely sharing enjoyment of objects or activities by pointing or showing things to others
Responding in an unusual way when others show anger, distress, or affection
Failing to, or being slow to, respond to someone calling their name or other verbal attempts to gain attention
Having difficulties with the back and forth of conversations
Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
Repeating words or phrases that they hear, a behavior called echolalia
Using words that seem odd, out of place, or have a special meaning known only to those familiar with that person’s way of communicating
Having facial expressions, movements, and gestures that do not match what is being said
Having an unusual tone of voice that may sound sing-song or flat and robot-like
Having trouble understanding another person’s point of view or being unable to predict or understand other people’s actions.
People with ASD may have other difficulties, such as being very sensitive to light, noise, clothing, or temperature. They may also experience sleep problems, digestion problems, and irritability.

ASD is unique in that it is common for people with ASD to have many strengths and abilities in addition to challenges.

Strengths and abilities may include:

Having above-average intelligence – the CDC reports  46% of ASD children have above average intelligence
Being able to learn things in detail and remember information for long periods of time
Being strong visual and auditory learners
Exceling in math, science, music, or art.
Diagnosing ASD

Doctors diagnose ASD by looking at a child’s behavior and development. Young children with ASD can usually be reliably diagnosed by age two.

Older children and adolescents should be evaluated for ASD when a parent or teacher raises concerns based on watching the child socialize, communicate, and play.

Diagnosing ASD in adults is not easy. In adults, some ASD symptoms can overlap with symptoms of other mental health disorders, such as schizophrenia or attention deficit hyperactivity disorder (ADHD). However, getting a correct diagnosis of ASD as an adult can help a person understand past difficulties, identify his or her strengths, and obtain the right kind of help.

Diagnosis in young children is often a two-stage process:

Stage 1: General Developmental Screening During Well-Child Checkups

Every child should receive well-child check-ups with a pediatrician or an early childhood health care provider. The Centers for Disease Control and Prevention (CDC) recommends  specific ASD screening be done at the 18- and 24-month visits.

Earlier screening might be needed if a child is at high risk for ASD or developmental problems. Those at high risk include children who:

Have a sister, brother, or other family member with ASD
Have some ASD behaviors
Were born premature, or early, and at a low birth weight.
Parents’ experiences and concerns are very important in the screening process for young children. Sometimes the doctor will ask parents questions about the child’s behaviors and combine this information with his or her observations of the child. Read more  about screening instruments on the CDC website.

Children who show some developmental problems during this screening process will be referred for another stage of evaluation.

Stage 2: Additional Evaluation

This evaluation is with a team of doctors and other health professionals with a wide range of specialties who are experienced in diagnosing ASD. This team may include:

A developmental pediatrician—a doctor who has special training in child development
A child psychologist and/or child psychiatrist—a doctor who knows about brain development and behavior
A speech-language pathologist—a health professional who has special training in communication difficulties.
The evaluation may assess:

Cognitive level or thinking skills
Language abilities
Age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting.
Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include:

Blood tests
Hearing test
The outcome of the evaluation will result in recommendations to help plan for treatment.

Diagnosis in older children and adolescents

Older children whose ASD symptoms are noticed after starting school are often first recognized and evaluated by the school’s special education team. The school’s team may refer these children to a health care professional.

Parents may talk with a pediatrician about their child’s social difficulties including problems with subtle communication. These subtle communication issues may include understanding tone of voice, facial expressions, or body language. Older children may have trouble understanding figures of speech, humor, or sarcasm. Parents may also find that their child has trouble forming friendships with peers. The pediatrician can refer the child for further evaluation and treatment.

Diagnosis in adults

Adults who notice the signs and symptoms of ASD should talk with a doctor and ask for a referral for an ASD evaluation. While testing for ASD in adults is still being refined, adults can be referred to a psychologist or psychiatrist with ASD expertise. The expert will ask about concerns, such as social interaction and communication challenges, sensory issues, repetitive behaviors, and restricted interests. Information about the adult’s developmental history will help in making an accurate diagnosis, so an ASD evaluation may include talking with parents or other family members.

Risk Factors

Scientists don’t know the exact causes of ASD, but research suggests that genes and environment play important roles.

Risk factors include:

Gender—boys are more likely to be diagnosed with ASD than girls
Having a sibling with ASD
Having older parents  (a mother who was 35 or older, and/or a father who was 40 or older when the baby was born)
Genetics—about 20% of children with ASD also have certain genetic conditions. Those conditions include Down syndrome, fragile X syndrome, and tuberous sclerosis among others.
In recent years, the number of children identified with ASD has increased. Experts disagree about whether this shows a true increase in ASD since the guidelines for diagnosis have changed in recent years as well. Also, many more parents and doctors now know about the disorder, so parents are more likely to have their children screened, and more doctors are able to properly diagnose ASD, even in adulthood.

Treatments and Therapies

Early treatment for ASD and proper care can reduce individuals’ difficulties while helping them learn new skills and make the most of their strengths. The very wide range of issues facing those “on the spectrum” means that there is no single best treatment for ASD. Working closely with a doctor or health care professional is an important part of finding the right treatment program. There are many treatment options, social services, programs, and other resources that can help.

Here are some tips.

Keep a detailed notebook. Record conversations and meetings with health care providers and teachers. This information helps when its time to make decisions.
Record doctors' reports and evaluations in the notebook. This information may help an individual qualify for special programs.
Contact the local health department, school, or autism advocacy groups to learn about their special programs.
Talk with a pediatrician, school official, or physician to find a local autism expert who can help develop an intervention plan and find other local resources.
Find an autism support group. Sharing information and experiences can help individuals with ASD and/or their caregivers learn about options, make decisions, and reduce stress.
Medication

A doctor may use medication to treat some difficulties that are common with ASD. With medication, a person with ASD may have fewer problems with:

Irritability
Aggression
Repetitive behavior
Hyperactivity
Attention problems
Anxiety and depression
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Personality Disorders

Borderline Personality Disorder

Definition

Borderline personality disorder (BPD) is a serious mental disorder marked by a pattern of ongoing instability in moods, behavior, self-image, and functioning. These experiences often result in impulsive actions and unstable relationships. A person with BPD may experience intense episodes of anger, depression, and anxiety that may last from only a few hours to days.

Some people with BPD also have high rates of co-occurring mental disorders, such as mood disorders, anxiety disorders, and eating disorders, along with substance abuse, self-harm, suicidal thinking and behaviors, and suicide.

While mental health experts now generally agree that the label "borderline personality disorder" is very misleading, a more accurate term does not exist yet.

Signs and Symptoms

People with BPD may experience extreme mood swings and can display uncertainty about who they are. As a result, their interests and values can change rapidly.

Other symptoms include

Frantic efforts to avoid real or imagined abandonment
A pattern of intense and unstable relationships with family, friends, and loved ones, often swinging from extreme closeness and love (idealization) to extreme dislike or anger (devaluation)
Distorted and unstable self-image or sense of self
Impulsive and often dangerous behaviors, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating
Recurring suicidal behaviors or threats or self-harming behavior, such as cutting
Intense and highly changeable moods, with each episode lasting from a few hours to a few days
Chronic feelings of emptiness
Inappropriate, intense anger or problems controlling anger
Having stress-related paranoid thoughts
Having severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body, or losing touch with reality
Seemingly ordinary events may trigger symptoms. For example, people with BPD may feel angry and distressed over minor separations—such as vacations, business trips, or sudden changes of plans—from people to whom they feel close. Studies show that people with this disorder may see anger in an emotionally neutral face and have a stronger reaction to words with negative meanings than people who do not have the disorder.

Some of these signs and symptoms may be experienced by people with other mental health problems—and even by people without mental illness—and do not necessarily mean that they have BPD. It is important that a qualified and licensed mental health professional conduct a thorough assessment to determine whether or not a diagnosis of BPD or other mental disorder is warranted, and to help guide treatment options when appropriate.

Tests and Diagnosis

Unfortunately, BPD is often underdiagnosed or misdiagnosed.
A licensed mental health professional experienced in diagnosing and treating mental disorders—such as a psychiatrist, psychologist, or clinical social worker—can diagnose BPD based on a thorough interview and a comprehensive medical exam, which can help rule out other possible causes of symptoms.

The licensed mental health professional may ask about symptoms and personal and family medical histories, including any history of mental illnesses. This information can help the mental health professional decide on the best treatment. In some cases, co-occurring mental illnesses may have symptoms that overlap with BPD, making it difficult to distinguish BPD from other mental illnesses. For example, a person may describe feelings of depression but may not bring other symptoms to the mental health professional's attention.

Research funded by NIMH is underway to look for ways to improve diagnosis of and treatments for BPD, and to understand the various components of BPD and other personality disorders such as impulsivity, relationship problems, and emotional instability.

Risk Factors

The causes of BPD are not yet clear, but research suggests that genetic, brain, environmental and social factors are likely to be involved.

Genetics. BPD is about five times more likely to occur if a person has a close family member (first-degree biological relatives) with the disorder.
Environmental and Social Factors. Many people with BPD report experiencing traumatic life events, such as abuse or abandonment during childhood. Others may have been exposed to unstable relationships and hostile conflicts. However, some people with BPD do not have a history of trauma. And, many people with a history of traumatic life events do not have BPD.
Brain Factors. Studies show that people with BPD have structural and functional changes in the brain, especially in the areas that control impulses and emotional regulation. However, some people with similar changes in the brain do not have BPD. More research is needed to understand the relationship between brain structure and function and BPD.
Research on BPD is focused on examining biological and environmental risk factors, with special attention on whether early symptoms may emerge at a younger age than previously thought. Scientists are also studying ways to identify the disorder earlier in adolescents.

Treatments and Therapies

BPD has historically been viewed as difficult to treat. However, with newer and proper treatment, many people with BPD experience fewer or less severe symptoms and an improved quality of life. Many factors affect the length of time it takes for symptoms to improve once treatment begins, so it is important for people with BPD and their loved ones to be patient and to receive appropriate support during treatment. People with BPD can recover.

If you think you have BPD, it is important to seek treatment.

NIMH-funded studies indicate that BPD patients who never recovered may be more likely to develop other chronic medical conditions and are less likely to make healthy lifestyle choices. BPD is also associated with a high rate of self-harm and suicidal behavior.

If you are thinking about harming yourself or attempting suicide, tell someone who can help right away. Call your licensed mental health professional if you are already working with one. If you are not already working with a licensed mental health professional, call your personal physician or go to the nearest hospital emergency room.

If a loved one is considering suicide, do not leave him or her alone. Try to get your loved one to seek immediate help from his or her doctor or the nearest hospital emergency room, or call 911. Remove any access he or she may have to firearms or other potential tools for suicide, including medications, sharp edges such as knives, ropes, or belts.

If you or a loved one are in crisis: Call the toll-free National Suicide Prevention Lifeline at 1-800-273-TALK (8255), available 24 hours a day, 7 days a week. The service is available to anyone. All calls are confidential.

The treatments described below are just some of the options that may be available to a person with BPD. However, the research on treatments is still in very early stages. More research is needed to determine the effectiveness of these treatments, who may benefit the most, and how best to deliver treatments.

Psychotherapy

Psychotherapy (or “talk therapy”) is the main treatment for people with BPD . Current research suggests psychotherapy can relieve some symptoms, but further studies are needed to better understand how well psychotherapy works.

Psychotherapy can be provided one-on-one between the therapist and the patient or in a group setting. Therapist-led group sessions may help teach people with BPD how to interact with others and how to express themselves effectively. It is important that people in therapy get along with and trust their therapist. The very nature of BPD can make it difficult for people with this disorder to maintain a comfortable and trusting bond with their therapist.

Types of psychotherapy used to treat BPD include:

Cognitive Behavioral Therapy (CBT): CBT can help people with BPD identify and change core beliefs and/or behaviors that underlie inaccurate perceptions of themselves and others and problems interacting with others. CBT may help reduce a range of mood and anxiety symptoms and reduce the number of suicidal or self-harming behaviors.
Dialectical Behavior Therapy (DBT): This type of therapy utilizes the concept of mindfulness, or being aware of and attentive to the current situation and moods. DBT also teaches skills to control intense emotions, reduce self-destructive behaviors, and improve relationships. DBT differs from CBT in that it integrates traditional CBT elements with mindfulness, acceptance, and techniques to improve a person’s ability to tolerate stress and control his or her emotions. DBT recognizes the dialectical tension between the need for acceptance and the need for change.
Schema-Focused Therapy: This type of therapy combines elements of CBT with other forms of psychotherapy that focus on reframing schemas, or the ways people view themselves. This approach is based on the idea that BPD stems from a dysfunctional self-image—possibly brought on by negative childhood experiences—that affects how people react to their environment, interact with others, and cope with problems or stress.
Systems Training for Emotional Predictability and Problem Solving (STEPPS) is a type of group therapy that aims to educate family members, significant others, and health care professionals about BPD and gives them guidance on how to interact consistently with the person with the disorder using the STEPPS approach and terminology. STEPPS is designed to supplement other treatments the patient may be receiving, such as medication or individual psychotherapy.
Families of people with BPD may also benefit from therapy. The challenges of dealing with a loved one with BPD on a daily basis can be very stressful, and family members may unknowingly act in ways that worsen their relative's symptoms. Some therapies include family members in treatment sessions. These types of programs help families develop skills to better understand and support a relative with BPD. Other therapies focus on the needs of family members and help them understand the obstacles and strategies for caring for a loved one with BPD. Although more research is needed to determine the effectiveness of family therapy in BPD, studies on other mental disorders suggest that including family members can help in a person's treatment.

Other types of psychotherapy may be helpful for some people with BPD. Therapists often adapt psychotherapy to better meet a person's needs. Therapists may also switch from one type of psychotherapy to another, mix techniques from different therapies, or use a combination of psychotherapies. For more information, please see the NIMH webpage on Psychotherapies.

Medications

Medications should not be used as the primary treatment for BPD as the benefits are unclear. However, in some cases, a mental health professional may recommend medications to treat specific symptoms, such as mood swings, depression, or other disorders that may occur with BPD. Treatment with medications may require care from more than one medical professional.

Because of the high risk of suicide among people with BPD, health care providers should exercise caution when prescribing medications that may be lethal in the event of an overdose.

Certain medications can cause different side effects in different people. Talk to your doctor about what to expect from a particular medication.

Other Treatments

Some people with BPD experience severe symptoms and require intensive, often inpatient, care. Others may use some outpatient treatments but never need hospitalization or emergency care. Although in rare cases, some people who develop this disorder may improve without any treatment, most people benefit from and improve their quality of life by seeking treatment.

Finding Help

More information about finding a health care provider or treatment for mental disorders in general is available on our Finding Help for Mental Illness webpage. You may also find additional information through the NIMH Outreach Partners or the NIMH National Partners.

How can I help a friend or relative who has BPD?

If you know someone who has BPD, it affects you too. The first and most important thing you can do is help your friend or relative get the right diagnosis and treatment. You may need to make an appointment and go with your friend or relative to see the doctor. Encourage him or her to stay in treatment or to seek different treatment if symptoms do not appear to improve with the current treatment.

To help a friend or relative you can:

Offer emotional support, understanding, patience, and encouragement—change can be difficult and frightening to people with BPD, but it is possible for them to get better over time.
Learn about mental disorders, including BPD, so you can understand what your friend or relative is experiencing.
With written permission from your friend or loved one, talk with his or her therapist to learn about therapies that may involve family members. Alternatively, you can encourage your loved one who is in treatment for BPD to ask about family therapy.
Seek counseling from your own therapist about helping a loved one with BPD. It should not be the same therapist that your loved one with BPD is seeing.
Never ignore comments about someone's intent or plan to harm himself or herself or someone else. Report such comments to the person's therapist or doctor. In urgent or potentially life-threatening situations, you may need to call the police or dial 911.

How can I help myself if I have BPD?

Although it may take some time, you can get better with treatment. To help yourself:

Talk to your doctor about treatment options and stick with treatment.
Try to maintain a stable schedule of meals and sleep times.
Engage in mild activity or exercise to help reduce stress.
Set realistic goals for yourself.
Break up large tasks into small ones, set some priorities, and do what you can, as you can.
Try to spend time with other people and confide in a trusted friend or family member.
Tell others about events or situations that may trigger symptoms.
Expect your symptoms to improve gradually over time, not immediately. Be patient.
Identify and seek out comforting situations, places, and people.
Continue to educate yourself about this disorder.
Don’t drink alcohol or use illicit drugs – they will likely make things worse
Clinical Trials

 

Psychotic Disorders

Fact Sheet: First Episode Psychosis

The word psychosis is used to describe conditions that affect the mind when there has been some loss of contact with reality.
Psychosis often begins when a person is in his or her late teens to midtwenties.
Psychosis can be a symptom of a mental illness or a physical condition.
Psychosis can be caused by some medications, alcohol or drug abuse.
Three out of 100 people will experience psychosis at some time in their lives.
About 100,000 adolescents and young adults in the US experience first episode psychosis each year.
Psychosis can include hallucinations (seeing, hearing, smelling, tasting or feeling something that is not real).
Psychosis can include paranoia or delusions (believing in something that is not real even when presented with facts).
Psychosis can include disordered thoughts and speech.
Psychosis affects people from all walks of life.
MYTH: A person with psychotic symptoms is dangerous.

FACT: People experiencing psychosis may behave strangely, they may hear voices, or see things that don’t exist. They may be frightened and confused or withdrawn. However, it is more likely that these people will harm themselves than someone else. It is important to help a person with psychotic symptoms get treatment as quickly as possible.

Treatment

Psychosis can be treated and early treatment increases the chance of a successful recovery.
Studies have shown that it is common for a person to have psychotic symptoms for more than a year before receiving treatment. Reducing this duration of untreated psychosis is important because early treatment often means a better recovery.
Research supports a variety of treatments for first episode psychosis, especially coordinated specialty care (CSC). CSC involves the following components:
Individual or group psychotherapy is typically based on cognitive behavior therapy (CBT) principles. CBT helps people solve their current problems. The CBT therapist helps the patient learn how to identify distorted or unhelpful thinking patterns, recognize and change inaccurate beliefs, relate to others in more positive ways, and change problematic behaviors.
Family support and education teaches family members about psychosis, coping, communication, and problem-solving skills. Family members who are informed and involved are more prepared to help loved ones through the recovery process.
Medications (also called pharmacotherapy) help reduce psychosis symptoms. Like all medications, antipsychotic drugs have risks and benefits. Clients should talk with their health care providers about side effects, medication costs, and dosage preferences (daily pill or monthly injection).
Supported Employment/Education (SEE) services help clients return to work or school and achieve their personal goals. Emphasis is on rapid placement in a work or school setting combined with coaching and support to ensure success.
Case Management helps clients with problem solving. The case manager may offer solutions to address practical problems, and coordinate social services across multiple areas of need.
It is important for individuals with psychosis to be involved in their treatment planning. Their needs and goals should drive their individual treatment programs, which will help them stay engaged throughout the recovery process.
It is important to find a mental health professional who is trained in psychosis treatment and who makes the client feels comfortable.


Fact Sheet: Early Warning Signs of Psychosis

Typically, a person will show changes in his or her behaviors before psychosis develops. The list below includes several warning signs of psychosis.

Worrisome drop in grades or job performance
New trouble thinking clearly or concentrating
Suspiciousness, paranoid ideas or uneasiness with others
Withdrawing socially, spending a lot more time alone than usual
Unusual, overly intense new ideas, strange feelings or having no feelings at all
Decline in self-care or personal hygiene
Difficulty telling reality from fantasy
Confused speech or trouble communicating
Any one of these items by itself may not be significant, but someone with several of the items on the list should consult a mental health professional. A qualified psychologist, a psychiatrist or a trained social worker will be able to make a diagnosis and help develop a treatment plan.

If you notice these changes in behavior and they begin to intensify or do not go away, it is important to seek help. Early treatment of psychosis increases the chance of a successful recovery.
      

What is schizophrenia?

Schizophrenia is a chronic and severe disorder that affects how a person thinks, feels, and acts. Although schizophrenia is not as common as other mental disorders, it can be very disabling. Approximately 7 or 8 individuals out of 1,000 will have schizophrenia in their lifetime.

People with the disorder may hear voices or see things that aren’t there. They may believe other people are reading their minds, controlling their thoughts, or plotting to harm them. This can be scary and upsetting to people with the illness and make them withdrawn or extremely agitated. It can also be scary and upsetting to the people around them.

People with schizophrenia may sometimes talk about strange or unusual ideas, which can make it difficult to carry on a conversation. They may sit for hours without moving or talking. Sometimes people with schizophrenia seem perfectly fine until they talk about what they are really thinking.

Families and society are impacted by schizophrenia too. Many people with schizophrenia have difficulty holding a job or caring for themselves, so they may rely on others for help. Stigmatizing attitudes and beliefs about schizophrenia are common and sometimes interfere with people’s willingness to talk about and get treatment for the disorder.

People with schizophrenia may cope with symptoms throughout their lives, but treatment helps many to recover and pursue their life goals. Researchers are developing more effective treatments and using new research tools to understand the causes of schizophrenia. In the years to come, this work may help prevent and better treat the illness.

What are the symptoms of schizophrenia?

The symptoms of schizophrenia fall into three broad categories: positive, negative, and cognitive symptoms.

Positive Symptoms

Positive symptoms are psychotic behaviors not generally seen in healthy people. People with positive symptoms may “lose touch” with some aspects of reality. For some people, these symptoms come and go. For others, they stay stable over time. Sometimes they are severe, and at other times hardly noticeable. The severity of positive symptoms may depend on whether the individual is receiving treatment. Positive symptoms include the following:

Hallucinations are sensory experiences that occur in the absence of a stimulus. These can occur in any of the five senses (vision, hearing, smell, taste, or touch). “Voices” (auditory hallucinations) are the most common type of hallucination in schizophrenia. Many people with the disorder hear voices. The voices can either be internal, seeming to come from within one’s own mind, or they can be external, in which case they can seem to be as real as another person speaking. The voices may talk to the person about his or her behavior, command the person to do things, or warn the person of danger. Sometimes the voices talk to each other, and sometimes people with schizophrenia talk to the voices that they hear. People with schizophrenia may hear voices for a long time before family and friends notice the problem.

Other types of hallucinations include seeing people or objects that are not there, smelling odors that no one else detects, and feeling things like invisible fingers touching their bodies when no one is near.

Delusions are strongly held false beliefs that are not consistent with the person’s culture. Delusions persist even when there is evidence that the beliefs are not true or logical. People with schizophrenia can have delusions that seem bizarre, such as believing that neighbors can control their behavior with magnetic waves. They may also believe that people on television are directing special messages to them, or that radio stations are broadcasting their thoughts aloud to others. These are called “delusions of reference.”

Sometimes they believe they are someone else, such as a famous historical figure. They may have paranoid delusions and believe that others are trying to harm them, such as by cheating, harassing, poisoning, spying on, or plotting against them or the people they care about. These beliefs are called “persecutory delusions.”

Thought disorders are unusual or dysfunctional ways of thinking. One form is called “disorganized thinking.” This is when a person has trouble organizing his or her thoughts or connecting them logically. He or she may talk in a garbled way that is hard to understand. This is often called “word salad.” Another form is called “thought blocking.” This is when a person stops speaking abruptly in the middle of a thought. When asked why he or she stopped talking, the person may say that it felt as if the thought had been taken out of his or her head. Finally, a person with a thought disorder might make up meaningless words, or “neologisms.”

Movement disorders may appear as agitated body movements. A person with a movement disorder may repeat certain motions over and over. In the other extreme, a person may become catatonic. Catatonia is a state in which a person does not move and does not respond to others. Catatonia is rare today, but it was more common when treatment for schizophrenia was not available.

Negative Symptoms

Negative symptoms are associated with disruptions to normal emotions and behaviors. These symptoms are harder to recognize as part of the disorder and can be mistaken for depression or other conditions. These symptoms include the following:

“Flat affect” (reduced expression of emotions via facial expression or voice tone)
Reduced feelings of pleasure in everyday life
Difficulty beginning and sustaining activities
Reduced speaking
People with negative symptoms may need help with everyday tasks. They may neglect basic personal hygiene.

This may make them seem lazy or unwilling to help themselves, but the problems are symptoms caused by schizophrenia.

Cognitive Symptoms

For some people, the cognitive symptoms of schizophrenia are subtle, but for others, they are more severe and patients may notice changes in their memory or other aspects of thinking. Similar to negative symptoms, cognitive symptoms may be difficult to recognize as part of the disorder. Often, they are detected only when specific tests are performed. Cognitive symptoms include the following:

Poor “executive functioning” (the ability to understand information and use it to make decisions)
Trouble focusing or paying attention
Problems with “working memory” (the ability to use information immediately after learning it)
Poor cognition is related to worse employment and social outcomes and can be distressing to individuals with schizophrenia.

When does schizophrenia start, and who gets it?

Schizophrenia affects slightly more males than females. It occurs in all ethnic groups around the world. Symptoms such as hallucinations and delusions usually start between ages 16 and 30. Males tend to experience symptoms a little earlier than females. Most commonly, schizophrenia occurs in late adolescence and early adulthood. It is uncommon to be diagnosed with schizophrenia after age 45. Schizophrenia rarely occurs in children, but awareness of childhood-onset schizophrenia is increasing.

It can be difficult to diagnose schizophrenia in teens. This is because the first signs can include a change of friends, a drop in grades, sleep problems, and irritability—behaviors that are common among teens. A combination of factors can predict schizophrenia in up to 80 percent of youth who are at high risk of developing the illness. These factors include isolating oneself and withdrawing from others, an increase in unusual thoughts and suspicions, and a family history of psychosis. This pre-psychotic stage of the disorder is called the “prodromal” period.

Are people with schizophrenia violent?

Most people with schizophrenia are not violent. In fact, most violent crimes are not committed by people with schizophrenia. People with schizophrenia are much more likely to harm themselves than others. Substance abuse may increase the chance a person will become violent. The risk of violence is greatest when psychosis is untreated and decreases substantially when treatment is in place.

Schizophrenia and suicide

Suicidal thoughts and behaviors are very common among people with schizophrenia. People with schizophrenia die earlier than people without a mental illness, partly because of the increased suicide risk.

It is hard to predict which people with schizophrenia are more likely to die by suicide, but actively treating any co-existing depressive symptoms and substance abuse may reduce suicide risk. People who take their antipsychotic medications as prescribed are less likely to attempt suicide than those who do not. If someone you know is talking about or has attempted suicide, help him or her find professional help right away or call 911.

Schizophrenia and substance use disorders

Substance use disorders occur when frequent use of alcohol and/or drugs interferes with a person’s health, family, work, school, and social life. Substance use is the most common co-occurring disorder in people with schizophrenia, and the complex relationships between substance use disorders and schizophrenia have been extensively studied. Substance use disorders can make treatment for schizophrenia less effective, and individuals are also less likely to engage in treatment for their mental illness if they are abusing substances. It is commonly believed that people with schizophrenia who also abuse substances are trying to “self-medicate” their symptoms, but there is little evidence that people begin to abuse substances in response to symptoms or that abusing substances reduces symptoms.

Nicotine is the most common drug abused by people with schizophrenia. People with schizophrenia are much more likely to smoke than people without a mental illness, and researchers are exploring whether there is a biological basis for this. There is some evidence that nicotine may temporarily alleviate a subset of the cognitive deficits commonly observed in schizophrenia, but these benefits are outweighed by the detrimental effects of smoking on other aspects of cognition and general health. Bupropion has been found to be effective for smoking cessation in people with schizophrenia. Most studies find that reducing or stopping smoking does not make schizophrenia symptoms worse.

Cannabis (marijuana) is also frequently abused by people with schizophrenia, which can worsen health outcomes. Heavy cannabis use is associated with more severe and earlier onset of schizophrenia symptoms, but research has not yet definitively determined whether cannabis directly causes schizophrenia.

Drug abuse can increase rates of other medical illnesses (such as hepatitis, heart disease, and infectious disease) as well as suicide, trauma, and homelessness in people with schizophrenia.

It is generally understood that schizophrenia and substance use disorders have strong genetic risk factors. While substance use disorder and a family history of psychosis have individually been identified as risk factors for schizophrenia, it is less well understood if and how these factors are related.

When people have both schizophrenia and a substance abuse disorder, their best chance for recovery is a treatment program that integrates the schizophrenia and substance abuse treatment.

What causes schizophrenia?

Research has identified several factors that contribute to the risk of developing schizophrenia.

Genes and Environment

Scientists have long known that schizophrenia sometimes runs in families. The illness occurs in less than 1 percent of the general population, but it occurs in 10 percent of people who have a first-degree relative with the disorder, such as a parent, brother, or sister. People who have second-degree relatives (aunts, uncles, grandparents, or cousins) with the disease also develop schizophrenia more often than the general population. The risk is highest for an identical twin of a person with schizophrenia. He or she has a 40 to 65 percent chance of developing the disorder. Although these genetic relationships are strong, there are many people who have schizophrenia who don’t have a family member with the disorder and, conversely, many people with one or more family members with the disorder who do not develop it themselves.

Scientists believe that many different genes contribute to an increased risk of schizophrenia, but that no single gene causes the disorder by itself. In fact, recent research has found that people with schizophrenia tend to have higher rates of rare genetic mutations. These genetic differences involve hundreds of different genes and probably disrupt brain development in diverse and subtle ways.

Research into various genes that are related to schizophrenia is ongoing, so it is not yet possible to use genetic information to predict who will develop the disease. Despite this, tests that scan a person’s genes can be bought without a prescription or a health professional’s advice. Ads for the tests suggest that with a saliva sample, a company can determine if a client is at risk for developing specific diseases, including schizophrenia. However, scientists don’t yet know all of the gene variations that contribute to schizophrenia and those that are known raise the risk only by very small amounts. Therefore, these “genome scans” are unlikely to provide a complete picture of a person’s risk for developing a mental disorder like schizophrenia.

In addition, it certainly takes more than genes to cause the disorder. Scientists think that interactions between genes and aspects of the individual’s environment are necessary for schizophrenia to develop. Many environmental factors may be involved, such as exposure to viruses or malnutrition before birth, problems during birth, and other, not yet known, psychosocial factors.

Different Brain Chemistry and Structure

Scientists think that an imbalance in the complex, interrelated chemical reactions of the brain involving the neurotransmitters dopamine and glutamate, and possibly others, plays a role in schizophrenia. Neurotransmitters are substances that brain cells use to communicate with each other. Scientists are learning more about how brain chemistry is related to schizophrenia.

Also, the brain structures of some people with schizophrenia are slightly different than those of healthy people. For example, fluid-filled cavities at the center of the brain, called ventricles, are larger in some people with schizophrenia. The brains of people with the illness also tend to have less gray matter, and some areas of the brain may have less or more activity.

These differences are observed when brain scans from a group of people with schizophrenia are compared with those from a group of people without schizophrenia. However, the differences are not large enough to identify individuals with the disorder and are not currently used to diagnose schizophrenia.

Studies of brain tissue after death also have revealed differences in the brains of people with schizophrenia. Scientists have found small changes in the location or structure of brain cells that are formed before birth. Some experts think problems during brain development before birth may lead to faulty connections. The problem may not show up in a person until puberty. The brain undergoes major changes during puberty, and these changes could trigger psychotic symptoms in people who are vulnerable due to genetics or brain differences. Scientists have learned a lot about schizophrenia, but more research is needed to help explain how it develops.

How is schizophrenia treated?

Because the causes of schizophrenia are still unknown, treatments focus on eliminating the symptoms of the disease. Treatments include antipsychotic medications and various psychosocial treatments. Research on “coordinated specialty care,” where a case manager, the patient, and a medication and psychosocial treatment team work together, has shown promising results for recovery.

Antipsychotic Medications

Antipsychotic medications have been available since the mid-1950s. The older types are called conventional or typical antipsychotics.

In the 1990s, new antipsychotic medications were developed. These new medications are called second-generation or atypical antipsychotics.

What are the side effects?

Some people have side effects when they start taking medications. Most side effects go away after a few days. Others are persistent but can often be managed successfully. People who are taking antipsychotic medications should not drive until they adjust to their new medication. Side effects of many antipsychotics include:

Drowsiness
Dizziness when changing positions
Blurred vision
Rapid heartbeat
Sensitivity to the sun
Skin rashes
Menstrual problems for women
Atypical antipsychotic medications can cause major weight gain and changes in a person’s metabolism. This may increase a person’s risk of getting diabetes and high cholesterol. A doctor should monitor a person’s weight, glucose levels, and lipid levels regularly while the individual is taking an atypical antipsychotic medication.

Typical antipsychotic medications can cause side effects related to physical movement, such as:

Rigidity
Persistent muscle spasms
Tremors
Restlessness
Doctors and individuals should work together to choose the right medication, medication dose, and treatment plan, which should be based on a person’s individual needs and medical situation. Information about medications is frequently updated. Check the U.S. Food and Drug Administration (FDA) website (http://www.fda.gov ) for the latest information on warnings, patient medication guides, or newly approved medications.

Long-term use of typical antipsychotic medications may lead to a condition called tardive dyskinesia (TD). TD causes muscle movements a person can’t control. The movements commonly happen around the mouth. TD can range from mild to severe, and in some people the problem cannot be cured. Sometimes people with TD recover partially or fully after they stop taking the medication.

TD happens to fewer people who take the atypical antipsychotics, but some people may still get TD. People who think that they might have TD should check with their doctor before stopping their medication.

How are antipsychotic medications taken, and how do people respond to them?

Antipsychotic medications are usually taken daily in pill or liquid form. Some antipsychotics are injections that are given once or twice a month.

Symptoms of schizophrenia, such as feeling agitated and having hallucinations, usually improve within days after starting antipsychotic treatment. Symptoms like delusions usually improve within a few weeks. After about 6 weeks, many people will experience improvement in their symptoms. Some people will continue to have some symptoms, but usually medication helps to keep the symptoms from getting very intense.

However, people respond in different ways to antipsychotic medications, and no one can tell beforehand how a person will respond. Sometimes a person needs to try several medications before finding the right one. Doctors and patients can work together to find the best medication or medication combination, as well as the right dose.

Most people will have one or more periods of relapse—their symptoms come back or get worse. Usually, relapses happen when people stop taking their medication or when they take it less often than prescribed.

Some people stop taking the medication because they feel better or they may feel they don’t need it anymore. But no one should stop taking an antipsychotic medication without first talking to his or her doctor. Medication should be gradually tapered off, never stopped suddenly.

How do antipsychotic medications interact with other medications?

Antipsychotic medications can produce unpleasant or dangerous side effects when taken with certain other medications. For this reason, all doctors treating a patient need to be aware of all the medications that person is taking. Doctors need to know about prescription and over-the-counter medicine, vitamins, minerals, and herbal supplements. People also need to discuss any alcohol or street drug use with their doctor.

Psychosocial Treatments

Psychosocial treatments can help people with schizophrenia who are already stabilized. Psychosocial treatments help individuals deal with the everyday challenges of their illness, such as difficulty with communication, work, and forming and keeping relationships. Learning and using coping skills to address these problems helps people with schizophrenia to pursue their life goals, such as attending school or work. Individuals who participate in regular psychosocial treatment are less likely to have relapses or be hospitalized. For more information on psychosocial treatments, see the psychotherapies section on the National Institute of Mental Health (NIMH) website at http://www.nimh.nih.gov/health/topics/psychotherapies/index.shtml.

Illness Management Skills

People with schizophrenia can take an active role in managing their own illness. Once they learn basic facts about schizophrenia and its treatment, they can make informed decisions about their care. If they know how to watch for the early warning signs of relapse and make a plan to respond, patients can learn to prevent relapses. Patients can also use coping skills to deal with persistent symptoms.

Rehabilitation

Rehabilitation emphasizes social and vocational training to help people with schizophrenia participate fully in their communities. Because schizophrenia usually develops during the critical career-development years (ages 18 to 35), the career and life trajectories for individuals with schizophrenia are usually interrupted and they need to learn new skills to get their work life back on track. Rehabilitation programs can include employment services, money management counseling, and skills training to maintain positive relationships.

Family Education and Support

Family education and support teaches relatives or interested individuals about schizophrenia and its treatment and strengthens their capacity to aid in their loved one’s recovery.

Cognitive Behavioral Therapy

Cognitive behavioral therapy (CBT) is a type of psychotherapy that focuses on changing unhelpful patterns of thinking and behavior. The CBT therapist teaches people with schizophrenia how to test the reality of their thoughts and perceptions, how to “not listen” to their voices, and how to manage their symptoms overall. CBT can help reduce the severity of symptoms and reduce the risk of relapse. CBT can be delivered individually or in groups.

Self-Help Groups

In self-help groups for people with schizophrenia, group members support and comfort each other and share information on helpful coping strategies and services. Professional therapists usually are not involved. People in self-help groups know that others are facing the same problems, which can help everyone feel less isolated and more connected.

How can you help a person with schizophrenia?

Family and friends can help their loved one with schizophrenia by supporting their engagement in treatment and pursuit of their recovery goals. Positive communication approaches will be most helpful. It can be difficult to know how to respond to someone with schizophrenia who makes strange or clearly false statements. Remember that these beliefs or hallucinations seem very real to the person. It is not helpful to say they are wrong or imaginary. But going along with the delusions is not helpful, either. Instead, calmly say that you see things differently. Tell them that you acknowledge that everyone has the right to see things his or her own way. In addition, it is important to understand that schizophrenia is a biological illness. Being respectful, supportive, and kind without tolerating dangerous or inappropriate behavior is the best way to approach people with this disorder.

What is the outlook for the future?

The outlook for people with schizophrenia continues to improve. Treatments that work well are available, and new ones are being developed. Many people with schizophrenia experience recovery and lead independent, satisfying lives.

Continued research and understanding in genetics, neuroscience, and behavioral science will help scientists and health professionals understand the causes of the disorder and how it may be predicted and prevented. This work will help experts develop better treatments to help people with schizophrenia achieve their full potential. In 2009, NIMH launched the Recovery After an Initial Schizophrenia Episode (RAISE) research project (http://www.nimh.nih.gov/raise). RAISE seeks to fundamentally change the trajectory and prognosis of schizophrenia through coordinated treatment in the earliest stages of the disorder. RAISE is designed to reduce the likelihood of long-term disability that people with schizophrenia often experience and help people with this disorder lead productive, independent lives.

Families and individuals who are living with schizophrenia are encouraged to participate in clinical research. For up-to-date information about the latest NIMH-funded research in schizophrenia, see the NIMH website at http://www.nimh.nih.gov.

 

Schizophrenia Basics

Schizophrenia is a serious mental disorder that affects how a person thinks, feels, and behaves. People with schizophrenia may seem like they have lost touch with reality. They may hear voices other people don’t hear. They may think other people are trying to hurt them. Sometimes they don’t make any sense when they talk.

Schizophrenia symptoms can make it hard for a person to interact with other people, go to school, keep a job, or take care of day-to-day tasks. The symptoms can be very disabling, but with effective treatment many people with schizophrenia experience recovery.

When does schizophrenia start and who gets it?

Schizophrenia occurs in slightly more men than women and affects all ethnic groups. Symptoms usually start between the ages of 16 and 30. In rare cases, children have schizophrenia too.

What are the symptoms of schizophrenia?

Schizophrenia symptoms fall into three categories: positive, negative, and cognitive.

“Positive” symptoms are psychotic experiences that are not generally seen in healthy people. People with these symptoms are sometimes unable to tell what’s real from what is imagined. These symptoms can be severe, and at other times, hardly noticeable. Positive symptoms include:
Hallucinations: when a person sees, hears, smells, tastes, or feels things that are not real. “Hearing voices” is common for people with schizophrenia. People who hear voices may hear them for a long time before family or friends notice a problem.
Delusions: when a person believes things that are not true. For example, a person may believe that people on the radio and television are talking directly to him or her. Sometimes people believe that they are in danger and others are trying to hurt them.
Thought disorders: when a person has ways of thinking that are odd or illogical. People with thought disorders may have trouble organizing their thoughts. Sometimes a person will stop talking in the middle of a thought or make up words that have no meaning.
Movement disorders: when a person has may appear as agitated body movements. A person may repeat certain motions over and over. In the other extreme, a person may stop moving or talking for a while, which is a rare condition called catatonia.
“Negative” symptoms refer to social withdrawal, difficulty showing emotions, or difficulty functioning normally. People with negative symptoms may need help with everyday tasks. Negative symptoms include:
Talking in a dull voice
Showing no facial expression, such as a smile or frown
Having trouble experiencing happiness
Having trouble planning and sticking with an activity, such as grocery shopping
Talking very little to other people, even when it is important
Cognitive symptoms are not easy to see, but they can make it hard for people to have a job or take care of themselves. Often, these symptoms are detected only when specific tests are performed. Cognitive symptoms include:
Difficulty using information to make decisions
Problems using information immediately after learning it
Trouble paying attention
What causes schizophrenia?

Many factors may cause schizophrenia, including:

Genes, because schizophrenia sometimes runs in families. However, it is important to know that just because someone in a family has schizophrenia, it does not mean other members of the family will have it as well.
The environment, such as exposure to viruses or nutrition problems before birth
Brain structures and brain chemistry
Scientists have learned a lot about schizophrenia, but more research is needed to help explain its causes.

How is schizophrenia treated?

Two main types of treatment can help with symptoms: antipsychotic medications and psychosocial treatments.

Antipsychotic medications help patients with the psychotic symptoms of schizophrenia. Some people have side effects when they start taking medications, but most side effects go away after a few days. Side effects include:
Blurry vision
Body movements a person can’t control, such as shaking
Dizziness
Drowsiness
Fast heartbeat
Feeling restless
Menstrual problems
Sensitivity to the sun
Skin rashes
Stiffness in the body
Some types of antipsychotic medications can cause a lot of weight gain and other health concerns, which can lead to diabetes, high cholesterol, or other conditions. Other types of antipsychotic medications can cause side effects related to physical movement where a person cannot control muscle movements, especially around the mouth.

People respond to antipsychotic medications differently, so it is important to report any of these side effects to a doctor. Sometimes a person needs to try several medications before finding the right one. People should not stop taking a medication without first talking to a doctor. Stopping medication suddenly can be dangerous, and it can make schizophrenia symptoms worse. 

Psychosocial treatments help patients deal with everyday challenges of schizophrenia. These treatments are often most helpful after patients find a medication that works. Treatments include:
Family education: teaches the whole family how to cope with the illness and help their loved one
Illness management skills: helps the patient learn about schizophrenia and manage it from day-to-day
Cognitive behavioral therapy (CBT): helps the patient identify current problems and how to solve them. A CBT therapist focuses on changing unhelpful patterns of thinking and behavior.
Rehabilitation: helps with getting a job or going to school and everyday living skills
Self-help groups: provide support from other people with the illness and their families
Treatment for drug and alcohol misuse: is often combined with other treatments for schizophrenia
Are people with schizophrenia violent?

Most people with schizophrenia are not violent; however, the risk of violence is greatest when schizophrenia is untreated. It is important to help a person with schizophrenia symptoms get treatment as quickly as possible. People with schizophrenia are much more likely to harm themselves than others.

What about drugs and alcohol?

It is common for people with schizophrenia to have problems with drugs and alcohol. A treatment program that includes treatment for both illnesses is critical for recovery because drug and alcohol abuse can interfere with treatment for schizophrenia.

Drug abuse can increase the risk of suicide, trauma, and homelessness in people with schizophrenia as well as the risk of developing other mental illnesses.

How can I help someone I know with schizophrenia?

Family and friends can help their loved ones with schizophrenia by helping them get treatment and encouraging them to stay in treatment.

Supporting a loved one with schizophrenia can be hard. Being respectful, supportive, and kind without tolerating dangerous behavior is the best way to help someone with schizophrenia. Check to see if there are any support groups in your area. Talking with others who support people with schizophrenia may help your whole family.

The outlook for people with schizophrenia continues to improve. Treatments that work well are available, and new ones are being developed. Many people with schizophrenia experience recovery and lead independent, satisfying lives.

 

Schizophrenia

Schizophrenia is a chronic and severe mental disorder that affects how a person thinks, feels, and behaves. People with schizophrenia may seem like they have lost touch with reality. Although schizophrenia is not as common as other mental disorders, the symptoms can be very disabling.

Signs and Symptoms

Symptoms of schizophrenia usually start between ages 16 and 30. In rare cases, children have schizophrenia too.

The symptoms of schizophrenia fall into three categories: positive, negative, and cognitive.

Positive symptoms: “Positive” symptoms are psychotic behaviors not generally seen in healthy people. People with positive symptoms may “lose touch” with some aspects of reality. Symptoms include:

Hallucinations
Delusions
Thought disorders (unusual or dysfunctional ways of thinking)
Movement disorders (agitated body movements)
Negative symptoms: “Negative” symptoms are associated with disruptions to normal emotions and behaviors. Symptoms include:

“Flat affect” (reduced expression of emotions via facial expression or voice tone)
Reduced feelings of pleasure in everyday life
Difficulty beginning and sustaining activities
Reduced speaking
Cognitive symptoms: For some patients, the cognitive symptoms of schizophrenia are subtle, but for others, they are more severe and patients may notice changes in their memory or other aspects of thinking. Symptoms include:

Poor “executive functioning” (the ability to understand information and use it to make decisions)
Trouble focusing or paying attention
Problems with “working memory” (the ability to use information immediately after learning it)
Risk Factors

There are several factors that contribute to the risk of developing schizophrenia.

Genes and environment: Scientists have long known that schizophrenia sometimes runs in families. However, there are many people who have schizophrenia who don’t have a family member with the disorder and conversely, many people with one or more family members with the disorder who do not develop it themselves.

Scientists believe that many different genes may increase the risk of schizophrenia, but that no single gene causes the disorder by itself. It is not yet possible to use genetic information to predict who will develop schizophrenia.

Scientists also think that interactions between genes and aspects of the individual’s environment are necessary for schizophrenia to develop. Environmental factors may involve:

Exposure to viruses
Malnutrition before birth
Problems during birth
Psychosocial factors
Different brain chemistry and structure: Scientists think that an imbalance in the complex, interrelated chemical reactions of the brain involving the neurotransmitters (substances that brain cells use to communicate with each other) dopamine and glutamate, and possibly others, plays a role in schizophrenia.

Some experts also think problems during brain development before birth may lead to faulty connections. The brain also undergoes major changes during puberty, and these changes could trigger psychotic symptoms in people who are vulnerable due to genetics or brain differences.

Treatments and Therapies

Because the causes of schizophrenia are still unknown, treatments focus on eliminating the symptoms of the disease. Treatments include:

Antipsychotics

Antipsychotic medications are usually taken daily in pill or liquid form. Some antipsychotics are injections that are given once or twice a month. Some people have side effects when they start taking medications, but most side effects go away after a few days. Doctors and patients can work together to find the best medication or medication combination, and the right dose. Check the U.S. Food and Drug Administration (FDA) website: (http://www.fda.gov/ ), for the latest information on warnings, patient medication guides, or newly approved medications.

Psychosocial Treatments

These treatments are helpful after patients and their doctor find a medication that works. Learning and using coping skills to address the everyday challenges of schizophrenia helps people to pursue their life goals, such as attending school or work. Individuals who participate in regular psychosocial treatment are less likely to have relapses or be hospitalized. For more information on psychosocial treatments, see the Psychotherapies webpage on the NIMH website.

Coordinated specialty care (CSC)

This treatment model integrates medication, psychosocial therapies, case management, family involvement, and supported education and employment services, all aimed at reducing symptoms and improving quality of life. The NIMH Recovery After an Initial Schizophrenia Episode (RAISE) research project seeks to fundamentally change the trajectory and prognosis of schizophrenia through coordinated specialty care treatment in the earliest stages of the disorder. RAISE is designed to reduce the likelihood of long-term disability that people with schizophrenia often experience and help them lead productive, independent lives.

How can I help someone I know with schizophrenia?

Caring for and supporting a loved one with schizophrenia can be hard. It can be difficult to know how to respond to someone who makes strange or clearly false statements. It is important to understand that schizophrenia is a biological illness.

Here are some things you can do to help your loved one:

Get them treatment and encourage them to stay in treatment
Remember that their beliefs or hallucinations seem very real to them
Tell them that you acknowledge that everyone has the right to see things their own way
Be respectful, supportive, and kind without tolerating dangerous or inappropriate behavior
Check to see if there are any support groups in your area
Join a Study

 

ADHD

Could I have Attention-Deficit/Hyperactivity Disorder (ADHD)? Finding an Answer to ADHD as an Adult

Do you feel that you have struggled throughout your life with poor concentration, inattention, impulsivity, or getting organized? Have you wondered whether you might have attention deficit/ hyperactivity disorder (ADHD)? Our society has become more aware of ADHD as a condition that affects adults as well as children, and there are many adults who struggle with this disorder. At the same time, other life stressors or mental health conditions can cause similar symptoms. Consider getting an evaluation from a psychiatrist or psychologist who has experience in diagnosing ADHD. Getting an evaluation can help you find the right answer to your struggles and identify the treatment you need to feel better.

What is ADHD?

ADHD is defined as a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.

Inattention means a person wanders off task, lacks persistence, has difficulty sustaining focus, and is disorganized; these problems are not due to defiance or lack of comprehension.
Hyperactivity means a person moves about excessively when it is not appropriate, and/or excessively fidgets, taps, or talks. In adults, it may appear as extreme restlessness or wearing others out with their activity.
Impulsivity means hasty actions that occur in the moment without a person thinking first; or a desire for immediate rewards or inability to delay gratification. Impulsive actions may have high potential for harm. An impulsive person may be socially intrusive and interrupt others excessively or make important decisions without considering the long-term consequences.
ADHD begins in childhood and is considered a developmental disorder, but a person may not receive a diagnosis until adolescence or adulthood.

To receive a diagnosis of ADHD as an adult:

Several symptoms must have been present before the age of 12.
A person must have at least five symptoms of either inattention and/or hyperactivity-impulsivity.
The symptoms must be present in two or more settings, such as at home and at work.
There must be evidence that the symptoms interfere with the person's functioning in these settings.
Several other mental health conditions commonly occur with ADHD, including conduct disorder, learning disorders, anxiety disorders, and depression.

How does ADHD affect adults?

Some children with ADHD continue to have the condition as adults.

Many adults who have ADHD don’t know it. These adults may feel that it is impossible to get organized, stick to a job, or remember to keep appointments. Daily tasks such as getting up in the morning, preparing to leave the house for work, arriving at work on time, and being productive on the job can be especially challenging for adults with undiagnosed ADHD. These adults may have a history of academic problems, problems at work, or difficult or failed relationships. Many have had multiple traffic accidents. Like teens, adults with ADHD may seem restless and may try to do several things at once, most of them unsuccessfully. They also tend to prefer "quick fixes," rather than taking the steps needed to achieve greater rewards.

A person may not be diagnosed with ADHD until adulthood because the condition was not recognized by teachers or family at a younger age, the person has a mild form of ADHD, or he or she managed fairly without the demands of adulthood. However, it is common for young adults with undiagnosed ADHD to encounter academic problems in college because of the intense concentration required by higher education.

Untreated ADHD in an adult can lead to significant problems with education, social and family situations and relationships, employment, self-esteem, and emotional health. It is never too late to recognize, diagnose, and treat ADHD and any other mental health condition that can commonly occur with it. Effective treatment can improve the lives of many adults and their families.

What are the symptoms of ADHD?

A person with inattention often:

Fails to give close attention to details or makes careless mistakes at work or during other activities
Has difficulty sustaining attention in tasks, such as during lectures or lengthy reading
Does not seem to listen when spoken to directly
Does not follow through on instructions and fails to finish chores or duties in the workplace
Has difficulty organizing tasks and activities—for example, is messy and has poor time management
Avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort
Loses things necessary for tasks or activities, such as keys, wallets, and mobile phones
Is easily distracted by unrelated thoughts or stimuli
Is forgetful in daily activities, such as paying bills, keeping appointments, or returning calls
A person with hyperactivity-impulsivity often:

Fidgets with or taps hands or feet or squirms in seat
Leaves seat in situations when remaining seated is expected
Feels restless or is unable to be still for extended periods of time
Is unable to engage in leisure activities quietly
Talks excessively
Blurts out an answer before a question has been completed
Has difficulty waiting his or her turn, such as when waiting in line
Interrupts or intrudes on others
Some people with ADHD primarily have symptoms of inattention, while others have primarily symptoms of hyperactivity-impulsivity. Some people have symptoms in both categories.

Problems with concentration and staying organized can be common for many busy adults; however, an adult who is impaired both at work and at home, or in social situations, is more likely to have ADHD.

What causes ADHD?

Scientists are not sure what causes ADHD, although many studies suggest that genes play a large role. Like many other illnesses, ADHD probably results from a combination of factors. In addition to genetics, researchers are looking at possible environmental factors and are studying how brain injuries, nutrition, and the social environment might contribute to ADHD.

How is ADHD in adults diagnosed?

Adults who suspect they have ADHD should see a licensed mental health professional or doctor, such as a psychologist or psychiatrist who has experience diagnosing ADHD, for an evaluation.

Stress, other mental health conditions, and physical conditions or illnesses can cause similar symptoms to those of ADHD. Some of these include:

Stress at work or home
Lack of sleep
Sleep apnea, a health condition in which a person has one or more pauses in breathing or shallow breaths while sleeping, causing poor sleep quality and daytime sleepiness
Lack of exercise
Lack of proper nutrition
Anxiety
Depression
Problems with the thyroid gland, a gland in the neck that makes the thyroid hormone, which controls the body's metabolism
Therefore, a thorough evaluation will help the doctor find out what is causing the symptoms and recommend effective treatment.

There is no one test that can diagnose ADHD. Mental health professionals use certain rating scales to determine if an adult meets the diagnostic criteria for ADHD.

A thorough evaluation also includes looking at the person’s history of childhood behavior and school experiences. To obtain this information, the doctor may interview spouses or partners, parents, close friends, and other associates.

The person may also undergo a physical exam and various psychological tests that evaluate working memory, executive functioning (abilities like planning and decision-making), and visual and spatial skills or reasoning. The evaluation will also look at the person’s mood and whether he or she struggles with other issues, such as anxiety, depression, or substance abuse. A person’s medical history is also important, as previous health problems, trauma, or injury can also be the cause of symptoms.

What are the treatments for ADHD in adults?

Adults with ADHD can be treated with behavioral interventions, medication, or a combination of the two.

Medications

Stimulants such as methylphenidate and amphetamines are the most common type of medication used for treating ADHD. In addition, a few nonstimulant medications are also available. Although not approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of ADHD, antidepressants are sometimes used to treat adults with ADHD. An adult who is offered a prescription for a stimulant for ADHD should tell his or her doctor about all other medications that he or she takes. Medications for common adult health problems, such as diabetes, high blood pressure, anxiety, and depression may interact badly with stimulants. In this case, a doctor can offer other medication options.

For general information about stimulants and other medications used for treating mental disorders, see the NIMH Mental Health Medications webpage (http://www. nimh.nih.gov/health/topics/mental-health-medications/ index.shtml). The FDA website (http://www.fda.gov ) has the latest information on medication approvals, warnings, and patient information guides.

Psychotherapy

Psychotherapy, including cognitive behavioral therapy, can help an adult with ADHD to become more aware of the deficit in attention and concentration and can provide the skills for improving organization and efficiency in daily tasks. It can also address feelings of low self-esteem and help adults with ADHD gain confidence, as well as control impulsive and risky behaviors. A professional counselor or therapist can also help an adult with ADHD learn how to organize his or her life and break large tasks down into smaller, more manageable steps.

Where can I turn if I feel alone in my diagnosis of ADHD?

In addition to the benefits of psychotherapy, adults with ADHD can gain social support and better coping skills by talking with family, friends, and colleagues about their diagnosis. If the people in their lives are aware of their diagnosis, they will better understand their behavior. Psychotherapy for families and couples can help any relationship problems and teach everyone involved about ADHD. There are also support groups just for adults with ADHD.

Some adults also find it helpful to obtain support from a professional life coach or ADHD coach who can help with a variety of skills to improve daily functioning.


Attention-Deficit/Hyperactivity Disorder (ADHD): The Basics

Do you find it hard to pay attention? Do you feel the need to move constantly during times when you shouldn’t? Do you find yourself constantly interrupting others? If these issues are ongoing and you feel that they are negatively impacting your daily life, it could be a sign of attention-deficit/hyperactivity disorder (ADHD).

ADHD is a disorder that makes it difficult for a person to pay attention and control impulsive behaviors. He or she may also be restless and almost constantly active.

ADHD is not just a childhood disorder. Although the symptoms of ADHD begin in childhood, ADHD can continue through adolescence and adulthood. Even though hyperactivity tends to improve as a child becomes a teen, problems with inattention, disorganization, and poor impulse control often continue through the teen years and into adulthood.

What causes ADHD?

Researchers at the National Institute of Mental Health (NIMH), National Institutes of Health (NIH), and across the country are studying the causes of ADHD. Current research suggests ADHD may be caused by interactions between genes and environmental or non-genetic factors. Like many other illnesses, a number of factors may contribute to ADHD such as:

Genes
Cigarette smoking, alcohol use, or drug use during pregnancy
Exposure to environmental toxins, such as high levels of lead, at a young age
Low birth weight
Brain injuries
Warning Signs

People with ADHD show an ongoing pattern of three different types of symptoms:

Difficulty paying attention (inattention)
Being overactive (hyperactivity)
Acting without thinking (impulsivity)
These symptoms get in the way of functioning or development. People who have ADHD have combinations of these symptoms:

Overlook or miss details, make careless mistakes in schoolwork, at work, or during other activities
Have problems sustaining attention in tasks or play, including conversations, lectures, or lengthy reading
Seem to not listen when spoken to directly
Fail to not follow through on instructions, fail to finish schoolwork, chores, or duties in the workplace, or start tasks but quickly lose focus and get easily sidetracked
Have problems organizing tasks and activities, such as doing tasks in sequence, keeping materials and belongings in order, keeping work organized, managing time, and meeting deadlines
Avoid or dislike tasks that require sustained mental effort, such as schoolwork or homework, or for teens and older adults, preparing reports, completing forms, or reviewing lengthy papers
Lose things necessary for tasks or activities, such as school supplies, pencils, books, tools, wallets, keys, paperwork, eyeglasses, and cell phones
Become easily distracted by unrelated thoughts or stimuli
Forgetful in daily activities, such as chores, errands, returning calls, and keeping appointments
Signs of hyperactivity and impulsivity may include:

Fidgeting and squirming while seated
Getting up and moving around in situations when staying seated is expected, such as in the classroom or in the office
Running or dashing around or climbing in situations where it is inappropriate, or, in teens and adults, often feeling restless
Being unable to play or engage in hobbies quietly
Being constantly in motion or “on the go,” or acting as if “driven by a motor”
Talking nonstop
Blurting out an answer before a question has been completed, finishing other people’s sentences, or speaking without waiting for a turn in conversation
Having trouble waiting his or her turn
Interrupting or intruding on others, for example in conversations, games, or activities
Showing these signs and symptoms does not necessarily mean a person has ADHD. Many other problems, like anxiety, depression, and certain types of learning disabilities, can have similar symptoms. If you are concerned about whether you or your child might have ADHD, the first step is to talk with a health care professional to find out if the symptoms fit the diagnosis. The diagnosis can be made by a mental health professional, like a psychiatrist or clinical psychologist, primary care provider, or pediatrician.

Treating ADHD

Although there is no cure for ADHD, currently available treatments may help reduce symptoms and improve functioning. ADHD is commonly treated with medication, education or training, therapy, or a combination of treatments.

Medication

For many people, ADHD medications reduce hyperactivity and impulsivity and improve their ability to focus, work, and learn. The first line of treatment for ADHD is stimulants.

Stimulants: Although it may seem unusual to treat ADHD with a medication that is considered a stimulant, it is effective. Many researchers think that stimulants are effective because the medication increases the brain chemical dopamine, which plays essential roles in thinking and attention.

Non-Stimulants: These medications take longer to start working than stimulants, but can also improve focus, attention, and impulsivity in a person with ADHD. Doctors may prescribe a non-stimulant if a person had bothersome side effects from stimulants, if a stimulant was not effective, or in combination with a stimulant to increase effectiveness. Two examples of non-stimulant medications include atomoxetine and guanfacine.

Antidepressants: Although antidepressants are not approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of ADHD, antidepressants are sometimes used to treat adults with ADHD. Older antidepressants, called tricyclics, sometimes are used because they, like stimulants, affect the brain chemicals norepinephrine and dopamine.

There are many different types and brands of these medications—all with potential benefits and side effects. Sometimes several different medications or dosages must be tried before finding the one that works for a particular person. Anyone taking medications must be monitored closely and carefully by their prescribing doctor.

Call your doctor right away if you have any problems with your medicine or if you are worried that it might be doing more harm than good. Your doctor may be able to adjust the dose or change your prescription to a different one that may work better for you.

Therapy

There are different kinds of therapy that have been tried for ADHD, but research shows that therapy may not be effective in treating ADHD symptoms. However, adding therapy to an ADHD treatment plan may help patients and families better cope with daily challenges.

For Children and Teens: Parents and teachers can help children and teens with ADHD stay organized and follow directions with tools such as keeping a routine and a schedule, organizing everyday items, using homework and notebook organizers, and giving praise or rewards when rules are followed.

For Adults: A licensed mental health provider or therapist can help an adult with ADHD learn how to organize his or her life with tools such as keeping routines and breaking down large tasks into more manageable, smaller tasks.

Education and Training

Children and adults with ADHD need guidance and understanding from their parents, families, and teachers to reach their full potential and to succeed. Mental health professionals can educate the parents of a child with ADHD about the condition and how it affects a family. They can also help the child and his or her parents develop new skills, attitudes, and ways of relating to each other. Examples include:

Parenting skills training teaches parents the skills they need to encourage and reward positive behaviors in their children.
Stress management techniques can benefit parents of children with ADHD by increasing their ability to deal with frustration so that they can respond calmly to their child’s behavior.
Support groups can help parents and families connect with others who have similar problems and concerns.
Adding behavioral therapy, counseling, and practical support can help people with ADHD and their families to better cope with everyday problems.

School-based Programs

Some schools offer special education services to children with ADHD who qualify. Educational specialists help the child, parents, and teachers make changes to classroom and homework assignments to help the child succeed. Public schools are required to offer these services for qualified children, which may be free for families living within the school district. Learn more about the Individuals with Disabilities Education Act (IDEA), visit http://idea.ed.gov/ .

Finding Help

The National Resource Center on ADHD, a program of Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD®) supported by the Centers for Disease Control and Prevention (CDC), has information and many resources. You can reach this center online at www.help4adhd.org  or by phone at 1-800-233-4050. You can also visit the NIMH’s Help for Mental Illness page at www.nimh.nih.gov/findhelp.

Participate in a Clinical Trial

It’s your involvement that helps researchers to ultimately uncover better ways to treat, prevent, diagnose, and understand human disease. You can get involved by participating in a clinical research trial. The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.

Researchers at the NIMH and other NIH institutes, such as the National Human Genome Research Institute, conduct research in many areas including cognition, genetics, epidemiology, brain imaging, and treatment development. The studies take place at the NIH Clinical Center in Bethesda, Maryland. If you think you might be interested in participating in a clinical trial, you should talk to your doctor about whether to apply and identify which ones are right for you. To learn about studies on ADHD that are currently recruiting at NIMH, visit http://www.nimh.nih.gov/joinastudy.

To find a clinical trial near you, visit ClinicalTrials.gov . This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from your health care provider.

 

Attention Deficit Hyperactivity Disorder

Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.

Inattention means a person wanders off task, lacks persistence, has difficulty sustaining focus, and is disorganized; and these problems are not due to defiance or lack of comprehension.
Hyperactivity means a person seems to move about constantly, including in situations in which it is not appropriate; or excessively fidgets, taps, or talks. In adults, it may be extreme restlessness or wearing others out with constant activity.
Impulsivity means a person makes hasty actions that occur in the moment without first thinking about them and that may have high potential for harm; or a desire for immediate rewards or inability to delay gratification. An impulsive person may be socially intrusive and excessively interrupt others or make important decisions without considering the long-term consequences.
Signs and Symptoms

Inattention and hyperactivity/impulsivity are the key behaviors of ADHD. Some people with ADHD only have problems with one of the behaviors, while others have both inattention and hyperactivity-impulsivity.Most children have the combined type of ADHD.

In preschool, the most common ADHD symptom is hyperactivity.

It is normal to have some inattention, unfocused motor activity and impulsivity, but for people with ADHD, these behaviors:

are more severe
occur more often
interfere with or reduce the quality of how they functions socially, at school, or in a job
Inattention

People with symptoms of inattention may often:

Overlook or miss details, make careless mistakes in schoolwork, at work, or during other activities
Have problems sustaining attention in tasks or play, including conversations, lectures, or lengthy reading
Not seem to listen when spoken to directly
Not follow through on instructions and fail to finish schoolwork, chores, or duties in the workplace or start tasks but quickly lose focus and get easily sidetracked
Have problems organizing tasks and activities, such as what to do in sequence, keeping materials and belongings in order, having messy work and poor time management, and failing to meet deadlines
Avoid or dislike tasks that require sustained mental effort, such as schoolwork or homework, or for teens and older adults, preparing reports, completing forms or reviewing lengthy papers
Lose things necessary for tasks or activities, such as school supplies, pencils, books, tools, wallets, keys, paperwork, eyeglasses, and cell phones
Be easily distracted by unrelated thoughts or stimuli
Be forgetful in daily activities, such as chores, errands, returning calls, and keeping appointments
Hyperactivity-Impulsivity

People with symptoms of hyperactivity-impulsivity may often:

Fidget and squirm in their seats
Leave their seats in situations when staying seated is expected, such as in the classroom or in the office
Run or dash around or climb in situations where it is inappropriate or, in teens and adults, often feel restless
Be unable to play or engage in hobbies quietly
Be constantly in motion or “on the go,” or act as if “driven by a motor”
Talk nonstop
Blurt out an answer before a question has been completed, finish other people’s sentences, or speak without waiting for a turn in conversation
Have trouble waiting his or her turn
Interrupt or intrude on others, for example in conversations, games, or activities
Diagnosis of ADHD requires a comprehensive evaluation by a licensed clinician, such as a pediatrician, psychologist, or psychiatrist with expertise in ADHD. For a person to receive a diagnosis of ADHD, the symptoms of inattention and/or hyperactivity-impulsivity must be chronic or long-lasting, impair the person’s functioning, and cause the person to fall behind normal development for his or her age. The doctor will also ensure that any ADHD symptoms are not due to another medical or psychiatric condition. Most children with ADHD receive a diagnosis during the elementary school years. For an adolescent or adult to receive a diagnosis of ADHD, the symptoms need to have been present prior to age 12.

ADHD symptoms can appear as early as between the ages of 3 and 6 and can continue through adolescence and adulthood. Symptoms of ADHD can be mistaken for emotional or disciplinary problems or missed entirely in quiet, well-behaved children, leading to a delay in diagnosis. Adults with undiagnosed ADHD may have a history of poor academic performance, problems at work, or difficult or failed relationships.

ADHD symptoms can change over time as a person ages. In young children with ADHD, hyperactivity-impulsivity is the most predominant symptom. As a child reaches elementary school, the symptom of inattention may become more prominent and cause the child to struggle academically. In adolescence, hyperactivity seems to lessen and may show more often as feelings of restlessness or fidgeting, but inattention and impulsivity may remain. Many adolescents with ADHD also struggle with relationships and antisocial behaviors. Inattention, restlessness, and impulsivity tend to persist into adulthood.

Risk Factors

Scientists are not sure what causes ADHD. Like many other illnesses, a number of factors can contribute to ADHD, such as:

Genes
Cigarette smoking, alcohol use, or drug use during pregnancy
Exposure to environmental toxins during pregnancy
Exposure to environmental toxins, such as high levels of lead, at a young age
Low birth weight
Brain injuries
ADHD is more common in males than females, and females with ADHD are more likely to have problems primarily with inattention. Other conditions, such as learning disabilities, anxiety disorder, conduct disorder, depression, and substance abuse, are common in people with ADHD.

Treatment and Therapies

While there is no cure for ADHD, currently available treatments can help reduce symptoms and improve functioning. Treatments include medication, psychotherapy, education or training, or a combination of treatments.

Medication

For many people, ADHD medications reduce hyperactivity and impulsivity and improve their ability to focus, work, and learn. Medication also may improve physical coordination. Sometimes several different medications or dosages must be tried before finding the right one that works for a particular person. Anyone taking medications must be monitored closely and carefully by their prescribing doctor.

Stimulants. The most common type of medication used for treating ADHD is called a “stimulant.” Although it may seem unusual to treat ADHD with a medication that is considered a stimulant, it works because it increases the brain chemicals dopamine and norepinephrine, which play essential roles in thinking and attention.
Under medical supervision, stimulant medications are considered safe. However, there are risks and side effects, especially when misused or taken in excess of the prescribed dose.For example, stimulants can raise blood pressure and heart rate and increase anxiety. Therefore, a person with other health problems, including high blood pressure, seizures, heart disease, glaucoma, liver or kidney disease, or an anxiety disorder should tell their doctor before taking a stimulant.

Talk with a doctor if you see any of these side effects while taking stimulants:

decreased appetite
sleep problems
tics (sudden, repetitive movements or sounds);
personality changes
increased anxiety and irritability
stomachaches
headaches
Non-stimulants. A few other ADHD medications are non-stimulants. These medications take longer to start working than stimulants, but can also improve focus, attention, and impulsivity in a person with ADHD. Doctors may prescribe a non-stimulant: when a person has bothersome side effects from stimulants; when a stimulant was not effective; or in combination with a stimulant to increase effectiveness.

Although not approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of ADHD, some antidepressants are sometimes used alone or in combination with a stimulant to treat ADHD. Antidepressants may help all of the symptoms of ADHD and can be prescribed if a patient has bothersome side effects from stimulants. Antidepressants can be helpful in combination with stimulants if a patient also has another condition, such as an anxiety disorder, depression, or another mood disorder.

Doctors and patients can work together to find the best medication, dose, or medication combination. Learn the basics about stimulants and other mental health medications on the NIMH Mental Health Medications webpage and check the FDAwebsite (http://www.fda.gov/ ), for the latest information on warnings, patient medication guides, or newly approved medications.

Psychotherapy

Adding psychotherapy to treat ADHD can help patients and their families to better cope with everyday problems.

Behavioral therapy is a type of psychotherapy that aims to help a person change his or her behavior. It might involve practical assistance, such as help organizing tasks or completing schoolwork, or working through emotionally difficult events. Behavioral therapy also teaches a person how to:

monitor his or her own behavior
give oneself praise or rewards for acting in a desired way, such as controlling anger or thinking before acting
Parents, teachers, and family members also can give positive or negative feedback for certain behaviors and help establish clear rules, chore lists, and other structured routines to help a person control his or her behavior. Therapists may also teach children social skills, such as how to wait their turn, share toys, ask for help, or respond to teasing. Learning to read facial expressions and the tone of voice in others, and how to respond appropriately can also be part of social skills training.

Cognitive behavioral therapy can also teach a person mindfulness techniques, or meditation. A person learns how to be aware and accepting of one’s own thoughts and feelings to improve focus and concentration. The therapist also encourages the person with ADHD to adjust to the life changes that come with treatment, such as thinking before acting, or resisting the urge to take unnecessary risks.

Family and marital therapy can help family members and spouses find better ways to handle disruptive behaviors, to encourage behavior changes, and improve interactions with the patient.

For more information on psychotherapy, see the Psychotherapies webpage on the NIMH website.

Education and Training

Children and adults with ADHD need guidance and understanding from their parents, families, and teachers to reach their full potential and to succeed. For school-age children, frustration, blame, and anger may have built up within a family before a child is diagnosed. Parents and children may need special help to overcome negative feelings. Mental health professionals can educate parents about ADHD and how it affects a family. They also will help the child and his or her parents develop new skills, attitudes, and ways of relating to each other.

Parenting skills training (behavioral parent management training) teaches parents the skills they need to encourage and reward positive behaviors in their children. It helps parents learn how to use a system of rewards and consequences to change a child’s behavior. Parents are taught to give immediate and positive feedback for behaviors they want to encourage, and ignore or redirect behaviors that they want to discourage. They may also learn to structure situations in ways that support desired behavior.

Stress management techniques can benefit parents of children with ADHD by increasing their ability to deal with frustration so that they can respond calmly to their child’s behavior.

Support groups can help parents and families connect with others who have similar problems and concerns. Groups often meet regularly to share frustrations and successes, to exchange information about recommended specialists and strategies, and to talk with experts.

Tips to Help Kids and Adults with ADHD Stay Organized

For Kids:

Parents and teachers can help kids with ADHD stay organized and follow directions with tools such as:

Keeping a routine and a schedule. Keep the same routine every day, from wake-up time to bedtime. Include times for homework, outdoor play, and indoor activities. Keep the schedule on the refrigerator or on a bulletin board in the kitchen. Write changes on the schedule as far in advance as possible.
Organizing everyday items. Have a place for everything, and keep everything in its place. This includes clothing, backpacks, and toys.
Using homework and notebook organizers. Use organizers for school material and supplies. Stress to your child the importance of writing down assignments and bringing home the necessary books.
Being clear and consistent. Children with ADHD need consistent rules they can understand and follow.
Giving praise or rewards when rules are followed. Children with ADHD often receive and expect criticism. Look for good behavior, and praise it.
For Adults:

A professional counselor or therapist can help an adult with ADHD learn how to organize his or her life with tools such as:

Keeping routines
Making lists for different tasks and activities
Using a calendar for scheduling events
Using reminder notes
Assigning a special place for keys, bills, and paperwork
Breaking down large tasks into more manageable, smaller steps so that completing each part of the task provides a sense of accomplishment.

THE END of NIMH Information

The information (below in blue) is sited for educational purposes.  Source: National Cancer
Institute; National Institutes of Health; U.S. Department of Health and Human Services. NCI provides a variety of free online publications for use by health care providers, researchers, educators, and the general public.  How to Access NCI Publications.  NCI does not endorse or recommend any commercial products, processes, or services. NCI also does not provide medical advice, treatment recommendations, or referrals for specific individuals or situations.

Cancer-National Cancer Institute (NCI)

Please excuse the formatting.  It's a work in progress

Taking Time -  Support for People With Cancer

Taking Time
National Cancer Institute
U.S. DEPARTMENT
OF HEALTH AND
HUMAN SERVICES
National Institutes
of Health
For more information . . .
This booklet is only one of many free booklets for people with
cancer. Here are some others you and your loved ones may
find useful:
• Biological Therapy
• Chemotherapy and You
• Coping With Advanced Cancer
• Eating Hints for Cancer Patients
• Taking Part in Cancer Treatment Research Studies
• Pain Control
• Radiation Therapy and You
• Thinking About Complementary and Alternative Medicine
• When Cancer Returns
• When Someone You Love Is Being Treated for Cancer
• When Someone You Love Has Advanced Cancer
• When Your Brother or Sister Has Cancer: A Guide for Teens
• When Your Parent Has Cancer: A Guide for Teens
These booklets are available online from the National
Cancer Institute (NCI). To learn more about the specific type
of cancer you have or to request any of these booklets, visit
NCI's website (http://www.cancer.gov). You can also call NCI's
We would like to offer our sincerest gratitude
to the extraordinary caregivers, health
professionals, and scientists who contributed to
the development and review of this publication.
Cancer Information Service at 1-800-4-CANCER (1-800-422-6237)
to speak with an information specialist. 
Taking Time -  Support for People With Cancer
This book was written for you—
the person with cancer.
Where are you in this challenge?
You may have just learned that you have cancer.
Or you may be in treatment.
At every point, most likely you have a range of feelings.
It’s important to try to accept these feelings and learn how
to live with them as best as you can.
Feelings about your cancer may be with you for a long time.
This book is for you, but it can also be helpful to those people
who are close to you. It may help them better understand
what you are going through. And even if you have
no close relatives or live far away from your family,
you may have friends who you think of as your “family.”
Whatever “family” means to you, share this book
with those who love and care about you. 
No one knows the story of tomorrow’s dawn.
—Ashanti (African) Proverb
Introduction
Cancer will change your life.
Millions of Americans alive today have a history of cancer. For them, cancer has
become a chronic (on-going) health problem, like high blood pressure or diabetes.
Just like everyone, people who have cancer must get regular checkups for the
rest of their lives, even after treatment ends. But unlike other chronic health
problems, if you have cancer you probably won’t need to take medicine or eat
special foods once you have finished treatment.
If you have cancer, you may notice every ache, pain, or sign of illness. Even little
aches may make you worry. You may even think about dying. While it’s normal to
think these thoughts, it’s also important to focus on living. Although some people
do die of it, many with the disease are treated successfully. Others will live a long
time before dying from it. So, try to make the most of each day while living with
cancer and its treatment.
People respond to cancer in many ways.
This book was written to help you learn from other people with cancer. Many
people have helped write this book—patients, their family members, and friends.
You will see their comments in all sections of the book. Finding out how others
respond to cancer might help you understand your own feelings. And learning
how others manage the special problems that cancer brings might help you find
ways to cope with the problems that come along for you.
How to use this book
No two people are alike. Some chapters of this book may apply to your situation
and others may not. Read the chapters that have meaning to you. The other
chapters may be useful later on.
This book is divided into seven chapters, plus a resource section at the end. Use
the Table of Contents to find the section of the book that’s most important to you
during your treatment. Each chapter begins with a “Read This First” box, which
tells you what is in that chapter. In addition, each chapter ends with a “Summing
Up” box, which repeats the key ideas in that chapter.
As you read this booklet, remember, right now—it’s all about you! 
Table of Contents
1. Your feelings: Learning you have cancer.........................................................1
Hope ..............................................................................................................................2
Denial ............................................................................................................................3
Anger .............................................................................................................................3
Fear and worry ............................................................................................................4
Stress .............................................................................................................................5
Pain................................................................................................................................6
Control and self-esteem .............................................................................................7
Sadness and depression .............................................................................................8
Guilt...............................................................................................................................9
Loneliness...................................................................................................................10
Gratitude ....................................................................................................................11
Summing up: learning you have cancer ................................................................11
2. Family matters.....................................................................................................13
Changes to your roles in the family........................................................................14
Spouses and partners ...............................................................................................16
Children ......................................................................................................................17
Adult children ............................................................................................................20
Parents.........................................................................................................................22
Close friends...............................................................................................................22
Summing up: cancer and your family ....................................................................23
3. Sharing your feelings about cancer................................................................25
Your friends and family have feelings about your cancer ...................................25
Finding a good listener .............................................................................................26
Choosing a good time to talk ...................................................................................26
Expressing anger........................................................................................................27
Be true to your feelings.............................................................................................28
Sharing without talking............................................................................................28
Summing up: sharing your thoughts and feelings about cancer .......................29
4. Talking to your health care team....................................................................31
Learning from your health care providers .............................................................32
Learning about your treatment choices .................................................................33
Learning more about your cancer ...........................................................................34
Summing up: learning about your cancer and regaining control.......................35
5. People helping people........................................................................................37
Family and friends ....................................................................................................38
Other people who have cancer ...............................................................................38
Support groups...........................................................................................................39
Spiritual help .............................................................................................................41
People in health care.................................................................................................42
People in the hospital ...............................................................................................45
Caregivers ...................................................................................................................46
Summing up: people helping people......................................................................49
6. Dealing with a new self-image.........................................................................51
Fatigue.........................................................................................................................52
Your self-image..........................................................................................................52
Staying active .............................................................................................................53
Getting help ...............................................................................................................53
Facing cancer with your spouse or partner ..........................................................54
Dating .........................................................................................................................55
Summing up: dealing with a new self-image........................................................56
7. Living each day.....................................................................................................57
Keeping up with your daily routine ........................................................................59
Working.......................................................................................................................60
Handling money worries ..........................................................................................62
Thinking about the future........................................................................................63
Advance Directives....................................................................................................63
After treatment is over .............................................................................................64
Summing up: Living each day..................................................................................64
Resources for learning more ..................................................................................65
vi
1
Chapter 1
Your feelings:
Learning you have cancer
You will have many feelings after you learn that you have cancer. These feelings
can change from day to day, hour to hour, or even minute to minute.
Some of the feelings you may go through include:
■ hope
■ denial
■ anger
■ fear
■ stress
■ depression
■ sadness
■ guilt
■ loneliness
■ gratitude
All these feelings are normal.
“I heard the doctor say, ‘I’m sorry; the
test results show that you have cancer.’
I heard nothing else. My mind went blank,
and then I kept thinking, ‘No, there must be
some mistake.’”
2
Learning that you have cancer can come as a shock. How did you react? You may
have felt numb, frightened, or angry. You may not have believed what the doctor
was saying. You may have felt all alone, even if your friends and family were in
the same room with you. These feelings are normal.
For many people, the first few weeks after diagnosis are very hard. After you hear
the word “cancer,” you may have trouble breathing or listening to what is being
said. When you’re at home, you may have trouble thinking, eating, or sleeping.
People with cancer and those close to them experience a wide range of feelings
and emotions. These feelings can change often and without warning.
At times, you may:
■ be angry, afraid, or worried
■ not really believe that you have cancer
■ feel out of control and not able to care for yourself
■ be sad, guilty, or lonely
■ have a strong sense of hope for the future
This chapter looks at many of the feelings that come up when people find out
they have cancer.
Hope
Once people accept that they have cancer, they often feel a sense of hope. There
are many reasons to feel hopeful.
■ Cancer treatment can be successful. Millions of people who have had
cancer are alive today.
■ People with cancer can lead active lives, even during treatment.
■ Your chances of living with—and living beyond—cancer are better now
than they have ever been before. People often live for many years after
their cancer treatment is over.
Some doctors think that hope may help your body deal with cancer. Scientists are
looking at the question of whether a hopeful outlook and positive attitude helps
people feel better. 
3
Here are some ways you can build your sense of hope:
■ Write down your hopeful feelings and talk about them with others.
■ Plan your days as you have always done.
■ Don’t limit the things you like to do just because you have cancer.
■ Look for reasons to hope.
You may find hope in nature, or your religious or spiritual beliefs. Or you may find
hope in stories (such as the ones in this book) about people with cancer who are
leading active lives.
However long the night, the dawn will break.
—Hausa (African) Proverb
Denial
When you were first diagnosed, you may have had trouble believing or accepting
the fact that you have cancer. This is called denial. It can be helpful because it
can give you time to adjust to your diagnosis. Denial can also give you time to
feel hopeful and better about the future.
Sometimes, denial is a serious problem. If it lasts too long, it can keep you from
getting the treatment you need. It can also be a problem when other people deny
that you have cancer, even after you have accepted it.
The good news is that most people (those with cancer as well as those they love
and care about) work through denial. Usually by the time treatment begins, most
people accept the fact that they have cancer.
Anger
Once you accept that you have cancer, you may feel angry and scared.
It’s normal to ask “Why me?” and be angry at:
■ the cancer
■ your health care providers
■ your healthy friends and loved ones
And if you’re religious, you might even be angry with God.
4
Anger sometimes comes from feelings that are hard to show—such as fear,
panic, frustration, anxiety, or helplessness. If you feel angry, don’t pretend that
everything is okay. Talk with your family and friends about it. Most of the time,
talking will help you feel a lot better. (See Chapter 3, “Sharing Your Feelings
About Cancer.”)
Fear and worry
“The word ‘cancer’ frightens everyone I know.
It’s a diagnosis that most people fear more than
any other.”
It’s scary to hear that you have cancer. You may be afraid or worried about:
■ being in pain, either from the cancer or the treatment
■ feeling sick or looking different as a result of your treatment
■ taking care of your family
■ paying your bills
■ keeping your job
■ dying
Your family and close friends may also worry about:
■ seeing you upset or in pain
■ not giving you enough support, love, and understanding
■ living without you
Some fears about cancer are based on stories, rumors, and old information. Most
people feel better when they know what to expect. They feel less afraid when
they learn about cancer and its treatment. As one man with prostate cancer said:
“I read as much as I can find about my cancer.
Imagining the worst is scarier than knowing
what might happen. Having all the facts makes
me much less afraid.” 
5
Stress
Your body may react to the stress and worry of having cancer. You may
notice that:
■ your heart beats faster
■ you have headaches or muscle pains
■ you don’t feel like eating, or you eat more


you feel sick to your stomach or have diarrhea

you feel shaky, weak, or dizzy

you have a tight feeling in your throat and chest

you sleep too much or too little
you find it hard to concentrate
Stress can also keep your body from fighting disease as well as it should.

You can learn to handle stress in many ways, like:

exercising

listening to music

reading books, poems, or magazines

getting involved in hobbies such as music or crafts

relaxing or meditating, such as lying down and slowly breathing in and out
talking about your feelings with family and close friends
If you’re concerned about stress, talk to your doctor. He or she can suggest a
social worker or a counselor. You could also find a class that teaches people ways
of dealing with stress. The key is to find ways to control stress and not to let it
control you.
Talking to one another is loving one another.
—Kenyan Proverb
6
Pain
Even though almost everyone worries about pain, it may not be a problem for
you. Some people don’t have any pain. Others have it only once in a while. Cancer
pain can almost always be relieved. If you’re in pain, your doctor can suggest
ways to help you feel better. These include:
■ prescription or over-the-counter medicines
■ cold packs or heating pads
■ relaxation, like getting a massage or listening to soothing music
■ imagery, such as thinking about a place where you feel happy and calm
■ distraction, like watching a movie, working on a hobby, or anything that
helps take your mind off your pain
There are many ways to control pain. Your doctor wants and needs to hear about
your pain. As soon as you have pain you should speak up. Dealing with your pain
can also help you cope with the feelings discussed in this chapter.
When you describe your pain to your health care provider, tell them:
■ where you feel pain
■ what it feels like (sharp, dull, throbbing, steady)
■ how strong the pain feels
■ how long it lasts
■ what eases the pain and what makes it worse
■ what medicines you are taking for the pain and how much they help
To find out more about pain, see the NCI booklet, Pain Control (information on
inside cover).
If you conceal your disease, you cannot expect to be cured.
—Ethiopian Proverb
7
Pain scales and pain journals
Pain scales or pain journals are tools that you can use to describe how much pain
you feel. These tools can also help your doctor find ways to treat your pain.
You are the only person who can talk about the pain you feel. When it comes to
pain, there is no right or wrong answer. On many pain scales, you are asked to
rate your pain as a number from 0 to 10. For example, you would rate your pain
as “0” if you feel no pain at all. You would rate your pain as “10” if it is the worst
pain you have ever felt in your life. You can pick any number between 0 and 10 to
describe your pain.
When you use a pain scale, be sure to include the range. For example, you might
say, “Today my pain is a 7 on a scale from 0 to 10.”
A pain journal or diary is another tool you can use to describe your pain. With a
journal or diary, you not only use a pain scale but also write down what you think
causes your pain and what helps you feel better.
Control and self-esteem
When you first learn that you have cancer, you may feel as if your life is out of
control. You may feel this way because:
■ you wonder if you’re going to live
■ your normal routine is disrupted by doctor visits and treatments
■ people use medical terms that you don’t understand
■ you feel like you can’t do things you enjoy
■ you feel helpless and lonely
■ you’ve never met some of the health professionals who are treating you
Even though you may feel out of control, there are ways you can be in charge. 
8
For example, you can:
■ Learn as much as you can about your cancer. You can call 1-800-4-CANCER
(1-800-422-6237). You can also go online at http://www.cancer.gov and
click on “LiveHelp” on the homepage. (See Chapter 4, “Learning About
Your Cancer and Feeling More in Control.”)
■ Ask questions. Let your health providers know when you don’t understand
what they are saying, or when you want more information about something.
■ Look beyond your cancer. Many people with cancer feel better when they
stay busy. You may still go to work, even if you need to adjust your schedule.
You can also take part in hobbies such as music, crafts, or reading.
As one woman with cancer commented:
“Once I started to feel better, I found myself
looking for new outlets for creativity. I had
always promised myself that some day I would
take a photography course. Having a new hobby
helped me feel better about other areas of my
life as well.”
Sadness and depression
Many people with cancer feel sad or depressed. This is a normal response to any
serious illness. When you’re depressed, you may have very little energy, feel tired,
or not want to eat.
Depression is sometimes a serious problem. If feelings of sadness and despair
seem to take over your life, you may have depression. The box on the next page
lists eight common signs of depression. Let your health provider know if you have
one or more of these signs almost every day.
Turn your face to the sun and the shadows fall behind you.
—Maori Proverb
9
Early signs of depression
Check the signs that are problems for you:
■ a feeling that you are helpless and hopeless, or that life has no meaning
■ no interest in being with your family or friends
■ no interest in the hobbies and activities you used to enjoy
■ a loss of appetite, or no interest in food
■ crying for long periods of time, or many times each day
■ sleep problems, either sleeping too much or too little
■ changes in your energy level
■ frequent thoughts about death and dying, including making plans or
taking action to kill yourself.
Depression can be treated. Your doctor may prescribe medication. He or she may
also suggest that you talk about your feelings with a counselor or social worker.
Guilt
Many people with cancer feel guilty. For example, you may blame yourself for
upsetting the people you love. You may worry that you are a burden to others,
either emotionally or financially. Or you may envy other people’s good health and
be ashamed of this feeling. You might even blame yourself for lifestyle choices
that could have led to your cancer. For example, that lying out in the sun caused
your skin cancer or that smoking cigarettes led to your lung cancer.
These feelings are all normal. One woman with breast cancer said:
“When I start to feel guilty that I caused my
illness, I think of how little children get cancer.
That makes me realize that cancer can just
happen. It isn’t my fault.”
10
Your family and friends may also feel guilty because:
■ they are healthy while you are sick
■ they can’t help you as much as they want
■ they feel stressed and impatient
They may also feel guilty when they don’t think they can give you all the care and
understanding you need.
Counseling and support groups can help with these feelings of guilt. Let your
doctor or nurse know if you, or someone in your family, would like to talk with a
counselor or go to a support group.
Shared joy is a double joy; shared sorrow is half a sorrow.
—Swedish Proverb
Loneliness
People with cancer often feel lonely or distant from others. You may find that
your friends have a hard time dealing with your cancer and may not visit. Some
people might not even be able to call you on the phone. You may feel too sick to
take part in the hobbies and activities you used to enjoy. And sometimes, even
when you are with people you love and care about, you may feel that no one
understands what you are going through.
You may feel less lonely when you meet other people who have cancer. Many
people feel better when they join a support group and talk with others who are
facing the same challenges. (See Chapter 5, “People Helping People.”)
Not everyone wants or is able to join a support group. Some people prefer to
talk with just one person at a time. You may feel better talking to a close friend
or family member, a social worker or counselor, or a member of your faith or
spiritual community.
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Gratitude
“I do have a lot of bad days, but you know, I don’t talk
about them or focus on them. Instead I think about
all the good things. I have a lot of nice times when I’m
with my grandchildren, when I go to church, and when
I’m with my friends.”
Some people see their cancer as a “wake-up call.” They may realize the
importance of enjoying the little things in life. They go places they’ve never been.
They finish projects they had started but put aside. They spend more time with
friends and family. They mend broken relationships.
It may be hard at first, but you can find joy in your life. Take note of what makes
you smile. Pay attention to the things you do each day that you enjoy. They can
be as simple as drinking your morning coffee, sitting with a pet, or talking to a
friend. These small, day-to-day activities can give you comfort and pleasure.
You can also do things that are more meaningful to you. Everyone has special
things, both large and small, that bring meaning to their life. For you, it may be
visiting a garden in your city or town. It may be praying in a certain chapel. Or
it could be playing golf or some other sport that you love. Whatever you choose,
embrace the things that bring you joy and gratitude when you can.
Summing up: Learning you have cancer
You will have many feelings as you learn to live with cancer. These feelings can
change from day to day, hour to hour, or even minute to minute.
Feelings of denial, anger, fear, stress and anxiety, depression, sadness, guilt, and
loneliness are all normal. So is a feeling of hope. While no one is cheerful all the
time, hope is a normal and positive part of your cancer experience. 
12
13
Chapter 2
Family matters
Cancer will change your life and the lives of people around you.
■ Your routines may be altered.
■ Roles and duties may change.
■ Relationships can be strained or strengthened.
■ Dealing with money and insurance can cause problems.
■ You may need to live with someone else for a while.
■ You may need help with chores and errands.
Most people find that if they, their friends, and family talk about the cancer
and how it makes them feel, they feel closer to each other.
How your family reacts to your cancer may depend a lot on how
you’ve faced hard times in the past.
Families are not all alike. Your family may include a spouse (husband or wife),
children, and parents. Or maybe you think of your partner or close friends as your
family. In this book, “family” refers to you and those who love and support you.
Cancer affects the whole family, not just the person with the disease. How are the
people in your family dealing with your cancer? Maybe they are afraid or angry,
just like you.
When you first find out you have cancer and are going through treatments, dayto-day
routines may change for everyone. For example, someone in your family
may need to take time off work to drive you to treatments. You may need help
with chores and errands. 
14
Some families find it easy to talk about cancer. They may easily share their
feelings about the changes that cancer brings to their lives. Other families find it
harder to talk about cancer. The people in these families may be used to solving
problems alone and not want to talk about their feelings.
Families that have gone through divorce or had other losses may have even more
trouble talking about cancer. As one woman with lung cancer said:
“Talking about my cancer was rough at first. My husband
and I divorced five years ago, so my mom had to move in and
help me with the boys. Eventually, I was able to tell my exhusband
about my cancer, and he helped the boys understand.
Our family has been through a lot, and we’ll get through this,
too. To me, the only constant in life is change.”
If your family is having trouble talking about feelings, think about getting some
help. Your doctor or nurse can refer you to a counselor who can help people in
your family talk about what cancer means to them. Many families find that, even
though it can be hard to do, they feel closer to each other when they deal with
cancer together.
Changes to your roles in the family
When someone in a family has cancer, everyone takes on new roles and
responsibilities. For example, a child may be asked to do more chores or a spouse
or partner may need to help pay bills, shop, or do yard work. Family members
sometimes have trouble adjusting to these new roles.
Adjusting to your new situation
Many families have trouble getting used to the role changes that may be required
when a loved one has cancer.
Money. Cancer can reduce the amount of money your family has to spend or
save. If you’re not able to work, someone else in your family may feel that he or
she needs to get a job. You and your family may need to learn more about health
insurance and find out what will be covered and what you need to pay for. Most
people find it stressful to keep up with money matters. (For more information,
see Chapter 7, “Living Each Day,” starting on page 58.) 
15
Living arrangements. People with cancer sometimes need to change where they
live or whom they live with. Now that you have cancer, you may need to move in
with someone else to get the care you need. This can be hard because you may
feel that you’re losing your independence, at least for a little while. Or, you may
need to travel far from home for treatment. If you have to be away from home for
treatments take a few little things from home with you. This way, there will be
something familiar even in a strange place.
Daily activities. You may need help with duties such as paying bills, cooking
meals, or coaching your children’s teams. Asking others to do these things for you
can be hard. A young father in treatment for colon cancer said:
“When I came home from the hospital, I wanted to
be in charge again but simply didn’t have the energy.
It was so hard to ask for help! But it became easier
to accept help when I realized that my kids felt
that they were contributing to my recovery.”
Developing a plan
Even when others offer to help, it’s important to let people know that you can still
do some things for yourself. As much as you’re able, keep up with your normal
routine by making decisions, doing household chores, and working on hobbies
that you enjoy.
Asking for help is not a sign of weakness. Think about hiring someone or asking for a
volunteer. You might be able to find a volunteer through groups in your community.
Paid help or volunteers may be able to help with:
■ physical care, such as bathing or dressing
■ household chores, such as cleaning or food shopping
■ skilled care, such as giving you special feedings or medications
Respite care. Just as you need time for yourself, your family members also need
time to rest, have fun, and take care of their other duties. Respite care is a way
people can get the time they need. In respite care, someone comes to your home
and takes care of you while your family member goes out for a while. Let your
doctor or social worker know if you want to learn more about respite care. (See
Chapter 5, “People Helping People.”) 
16
Spouses and partners
“I was scared when my husband got cancer. He had
always taken care of me and we did everything
together. I was afraid I wouldn’t be strong enough to
help him through his treatment. I was afraid that he
might not recover. And I was afraid to talk about my
fears with him because I didn’t want to upset him.”
Your husband, wife, or partner may feel just as scared by cancer as you do. You
both may feel anxious, helpless, or afraid. You may find it hard to be taken care of
by someone you love.
People react to cancer in different ways. Some cannot accept that cancer is a
serious illness. Others try too hard to be “perfect” caregivers. And some people
refuse to talk about cancer. For most people, thinking about the future is scary.
It helps if you and the people close to you can talk about your fears and concerns.
You may want to meet with a counselor who can help both of you talk about
these feelings.
Sharing information
Including your spouse or partner in treatment decisions is important. You can
meet with your doctor together and learn about your type of cancer. You might
want to find out about common symptoms, treatment choices, and their side
effects. This information will help both of you plan for the future.
Your spouse or partner will also need to know how to help take care of your body
and your feelings. And, even though it’s not easy, both of you should think about
the future and make plans in case you don’t survive your cancer. You may find it
helpful to meet with a financial planner or a lawyer.
Staying close
Everyone needs to feel needed and loved. You may have always been the “strong
one” in your family, but now is the time to let your spouse or partner help you.
This can be as simple as letting the other person fluff your pillow, bring you a
cool drink, or read to you.
17
Feeling sexually close to your partner is also important. You may not be
interested in sex when you’re in treatment because you feel tired, sick to your
stomach, or in pain. But when your treatment is over, you may feel like having
sex again. Until then, you and your spouse or partner may need to find new
ways to show that you care about each other. This can include touching, holding,
hugging, and cuddling. (See also Chapter 6, “Dealing with a New Self-Image.”)
Time away
Your spouse or partner needs to keep a sense of balance in his or her life. He or
she needs time to take care of personal chores and errands. Your partner will
also need time to sort through his or her own feelings about cancer. And most
importantly, everyone needs time to rest. If you don’t want to be alone when your
loved one is away, think about getting respite care or asking a friend to stay with
you. (See “Caregivers” on page 46.)
What the family talks about in the evening,
the child will talk about in the morning.
—Kenyan Proverb
Children
Even though your children will be sad and upset when they learn about your
cancer, do not pretend that everything is okay. Even very young children can
sense when something is wrong. They will see that you don’t feel well or aren’t
spending as much time with them as you used to. They may notice that you
have a lot of visitors and phone calls or that you need to be away from home for
treatment and doctor’s visits.
Telling children about cancer
Children as young as 18 months old begin to think about and understand what
is going on around them. It is important to be honest and tell your children that
you are sick and the doctors are working to make you better. Telling them the
truth is better than letting them imagine the worst. Give your children time to
ask questions and express their feelings. And if they ask questions that you can’t
answer, let them know that you will find out the answers for them. 
18
When you talk with your children, use words and terms they can understand.
For example, say “doctor” instead of “oncologist” or “medicine” instead of
“chemotherapy.” Tell your children how much you love them and suggest ways
they can help with your care. Share books about cancer that are written for
children. Your doctor, nurse, or social worker can suggest good ones for your child.
Let other adults in your children’s lives know about your cancer. This includes
teachers, neighbors, coaches, or other relatives who can spend extra time with
them. These other adults may be able to take your children to their activities, as
well as listen to their feelings and concerns. Your doctor or nurse can also help by
talking with your children and answering their questions. Or you can ask them
if there’s a child-life specialist on staff. This is a person who can help children
understand medical issues and also offer psychological and emotional support.
How children may react
Children can react to cancer in many different ways. For example, they may:
■ be confused, scared, or lonely
■ feel guilty and think that something they did or said caused your cancer
■ feel angry when they are asked to be quiet or do more chores around
the house
■ miss the amount of attention they are used to getting
■ regress and behave as they did when they were much younger
■ get into trouble at school or at home
■ be clingy and afraid to leave the house
“Now that my Mom has cancer, everything has changed.
I want to be with her, but I want to hang out with my
friends, too. She needs me to help with my little brother,
but what I really want to do is play football like I used to.”
Teenagers and a parent’s cancer
Teens are at a time in their lives when they are trying to break away and be
independent from their parents. When a parent has cancer, breaking away can be
hard for them to do. They may become angry, act out, or get into trouble. 
19
Try to get your teens to talk about their feelings. Tell them as much as they want
to know about your cancer. Ask them for their opinions and, if possible, let them
help you make decisions.
Teens may want to talk with other people in their lives. Friends can be a great
source of support, especially those who also have serious illness in their family.
Other family members, teachers, coaches, and spiritual leaders can also help.
Encourage your teenage children to talk about their fears and feelings with
people they trust and feel close to. Some towns even have support groups for
teens whose parents have cancer. Also, ask your social worker about Internet
resources for this group. Many have online chats and forums for support. See the
booklets on teens on the inside cover for more information.
What children of all ages need to know:
About cancer
■ Nothing your child did, thought, or said caused you to get cancer.
■ You can’t catch cancer from another person. Just because you have cancer
does not mean that others in your family will get it, too.
■ Just because you have cancer does not mean you will die from it. In fact,
many people live with cancer for a long time.
■ Scientists are finding many new ways to treat cancer.
About living with cancer in the family
■ Your child is not alone. Other children have parents who have cancer.
■ It is okay to be upset, angry, or scared about your illness.
■ Your child can’t do anything to change the fact that you have cancer.
■ Family members may act differently because they are worried about you.
■ You will make sure that your children are taken care of, no matter what
happens to you.
About what they can do
■ They can help you by doing nice things like washing dishes or drawing you
a picture.
■ They should still go to school and take part in sports and other fun
activities.
■ They can talk to other adults such as teachers, family members, and
religious leaders.
20
Adult children
Your relationship with your adult children may change now that you have cancer.
You may:
■ Ask them to take on new duties, such as making health care decisions,
paying bills, or taking care of the house.
■ Ask them to explain some of the information you’ve received from your
doctor or to go with you to doctor’s visits so they can also hear what the
doctors are telling you.
■ Rely on them for emotional support. For instance, you may ask them to act
as “go-betweens” with friends or other family members.
■ Want them to spend a lot of time with you. This can be hard, especially if
they have jobs or young families of their own.
■ Find it hard to receive—rather than give—comfort and support from them.
■ Feel awkward when they help with your physical care, such as feeding
or bathing.
As the adult daughter of a woman with ovarian cancer said:
“Mom was always the rock in the family. Whenever
any of us had a problem, we could go to her for help.
Now we had to help her. It was almost as though we
were the parents and she was the child. To make it
even harder, we had our own children to take care
of and jobs to go to.”
Talking with your adult children
It is important to talk about cancer with your adult children, even if they get
upset or worry about you. Include them when talking about your treatment. Let
them know your thoughts and wishes. They should be prepared in case you don’t
recover from your cancer.
21
Even adult children worry that their parents will die. When they learn that you
have cancer, adult children may realize how important you are to them. They
may feel guilty if they haven’t been close with you. They may feel bad if they
can’t spend a lot of time with you because they live far away or have other duties.
Some of these feelings may make it harder to talk to them.
If you have trouble talking with your adult children, ask your doctor to suggest a
counselor or social worker you can all talk with.
Make the most of the time you have with your adult children. Talk about how
much you mean to each other. Express all your feelings—not just love but also
anxiety, sadness, and anger. Don’t worry about saying the wrong thing. It’s better
to share your feelings rather than hide them.
One who conceals grief finds no remedy for it.
—Turkish Proverb
Cancer risk for the children of people who have cancer
Now that you have cancer, your children may wonder about their chance of
getting it as well. A higher risk for some types of cancer is passed from parent
to child. However, this is not the case for every type. And everyone’s body is
different. If concerned, however, children should talk with a doctor about their
risk of getting cancer.
Testing for certain genes can be a way to find out if a person is at higher risk of
getting cancer. Although some genetic tests can be helpful, they don’t always
give people the kinds of answers they are seeking. Talk to your doctor if you or
someone in your family wants to learn more about genetic changes that increase
cancer risk.
He or she can refer you to a person who is specially trained in this area. These
experts can help you think through your choices and answer your questions. 
22
Parents
Since people are living much longer these days, many people with cancer may
also be caring for their aging parents. For example, you may help your parents
with their shopping or take them to doctor. They may even live with you.
You have to decide how much to tell your parents about your cancer. Your decision
may depend on how well they can understand and cope with the news. If your
parents are in good health, think about talking with them about your disease.
Now that you have cancer, you may need extra help caring for your parents. You
may need help only while you’re in treatment. Or you may need to make longterm
changes in your parents’ care. Talk with your family members, friends,
health professionals, and community agencies to see how they can help. (See
Chapter 5, “People Helping People”)
Do not protect yourself by a fence, but rather by your friends.
—Czech Proverb
Close friends
Once friends learn of your cancer, they may begin to worry. Some will ask you to
tell them ways to help. Others will wonder how they can help but may not know
how to ask. You can help your friends cope with the news by letting them help
you in some way. Think about the things your friends do well and don’t mind
doing. Make a list of things you think you might need. This way, when they ask
you how they can be of help, you’ll be able to share your list of needs and allow
them to pick something they’re willing to do.
Sample list of need:
■ Baby-sit on days that I go to treatment.
■ Prepare frozen meals for my “down days.”
■ Put my name on the prayer list at my place of worship.
■ Bring me a few books from the library when you go.
■ Visit for tea or coffee when you can.
■ Let others know that it is alright to call or visit me (or let others know that
I’m not ready for visitors just yet).
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Summing up: Cancer and your family
Cancer will not only change your life, but also the lives of those around you.
It impacts families and friends in different ways.
■ Talking about cancer can be hard for some families.
■ Routines of family life may change.
■ Roles and duties within the family will change.
■ Relationships can be both strained and strengthened.
■ Dealing with money and insurance often become hard.
■ You may need to change where you live and with whom, at least
for awhile.
As you think about how cancer has changed your life and your family’s life,
think about reaching outside your family to get help.
■ You may need help with household chores and errands.
■ Respite care can give your regular caregivers a much-needed break.
■ Counseling and support groups can help your family deal with the
issues that cancer raises.
Most families find that being honest and open about the cancer, about the
problems that arise, and about their feelings, helps them handle the changes
that cancer causes.
Your caregivers may find it helpful to read the NCI booklet, When Someone You
Love is Being Treated for Cancer, listed on the inside front cover of this booklet.
24
25
Chapter 3
Sharing your feelings about cancer
Talking about your feelings can help you deal with your cancer.
■ Choose a good listener.
■ Choose a good time to share your feelings.
■ Understand your feelings of anger.
■ Be truthful to what your feelings are.
You may need to find someone outside your family to talk to.
Cancer is too much to handle all by yourself.
Your friends and family have feelings about your cancer
Just as you have strong feelings about cancer, your family or friends will react to it
as well. For instance, your friends or family may:
■ hide or deny if they feel sad
■ find someone to blame for your cancer
■ change the subject when someone talks about cancer
■ act mad for no real reason
■ make jokes about cancer
■ pretend to be cheerful all the time
■ avoid talking about your cancer
■ stay away from you, or keep their visits short
26
Finding a good listener
It can be hard to talk about how it feels to have cancer. But talking can help, even
though it’s hard to do. Many people find that they feel better when they share
their thoughts and feelings with their close family and friends.
Friends and family members may not always know what to say to you.
Sometimes they can help by just being good listeners. They don’t always need to
give you advice or tell you what they think. They simply need to show that they
care and are concerned about you.
You might find it helpful to talk about your feelings with people who aren’t
family or friends. Instead, you might want to meet in a support group with others
who have cancer or talk with a counselor. You can find more information about
where to go for help in Chapter 5, “People Helping People” starting on page 37.
A single arrow is easily broken, but not ten in a bundle.
—Japanese Proverb
Choosing a good time to talk
Some people need time before they can talk about their feelings. If you aren’t
ready, you might say, “I don’t feel like talking about my cancer right now. Maybe
I will later.” And sometimes when you want to talk, your family and friends may
not be ready to listen.
It’s often hard for other people to know when to talk about cancer. Sometimes
people send a signal when they want to talk. They might:
■ bring up the subject of cancer
■ talk about things that have to do with cancer, such as a newspaper story
about a new cancer treatment that they just read
■ spend more time with you
■ act nervous or make jokes that aren’t very funny
27
You can help people feel more comfortable by asking them what they think or how
they feel. Sometimes people can’t put their feelings into words. Sometimes, they
just want to hug each other or cry together. A man with stomach cancer said,
“It was really hard to get my sister to talk about my
cancer. Finally, I just said to her, ‘I know you’re really
worried and scared. So am I. Let’s talk about it.’ She
was so relieved that I had brought the subject up.”
Expressing anger
Many people feel angry or frustrated when they deal with cancer. You might find
that you get mad or upset with the people you depend on. You may get upset
with small things that never bothered you before.
People can’t always express their feelings. Anger sometimes shows up as actions
instead of words. You may find that you yell a lot at the kids or the dog. You might
slam doors.
Try to figure out why you’re angry. Maybe you’re afraid of the cancer or are
worried about money. You might even be angry about your treatment. A man with
advanced cancer said:
“I got so angry some days that I just wanted to take
it out on something. On those days, I always tried to
be angry at my cancer, not at my wife and daughter.”
When anger rises, think of the consequences.
—Confucius
28
Be true to your feelings
Some people pretend to be cheerful, even when they’re not. They think that they
won’t feel sad or angry if they act cheerful. Or they want to seem as if they’re able
to handle the cancer by themselves. Also, your family and friends may not want
to upset you and will act as if nothing is bothering them. You may even think that
being cheerful may help your cancer go away.
When you have cancer, you have many reasons to be upset. “Down days” are to be
expected. You don’t have to pretend to be cheerful when you’re not. This can keep
you from getting the help you need. Be honest and talk about all your feelings,
not just the positive ones. An older woman with liver cancer said:
“The advice of well-meaning friends to be positive, optimistic,
and upbeat can also be a call for silence. Ask them about it.
Don’t let them force you to put on a fake smile when that’s
the last thing you feel like doing.”
Sharing without talking
For many, it’s hard to talk about being sick. Others feel that cancer is a personal
or private matter and find it hard to talk openly about it. If talking is hard for
you, think about other ways to share your feelings. For instance, you may find it
helpful to write about your feelings. This might be a good time to start a journal
or diary if you don’t already have one. Writing about your feelings is a good way
to sort through them and a good way to begin to deal with them. All you need to
get started is something to write with and something to write on.
Journals can be personal or shared. People can use a journal as a way of ‘talking’
to each other. If you find it hard to talk to someone near to you about your cancer
try starting a shared journal. Leave a booklet or pad in a private place that both of
you select. When you need to share, write in it and return it to the private place.
Your loved one will do the same. Both of you will be able to know how the other is
feeling without having to speak aloud.
If you have e-mail, this can also be a good way to share without talking. 
29
Summing up: Sharing your thoughts and feelings
about cancer
Cancer is hard to deal with all alone. Although talking about it may not be easy
at first, most people find that sharing their thoughts and feelings helps them
deal with their cancer.
Keep in mind:
■ Choose a good listener. You may not need someone to give you advice or
tell you what to do. Instead, you may want someone who wants to hear
about and try to understand what life is like for you right now. You may
need to look outside your family to find such a person.
■ Choose a good time to share. Sometimes people will send signals to let
you know they’re willing to talk about cancer with you. Sometimes you
can ask others about their thoughts and feelings.
■ Understand anger. Sometimes angry words come from emotions other
than anger, like frustration, worry, or sadness. Try to figure out why you
feel angry and why you need to express it. Don’t run away from these
feelings—share them and try to understand them.
■ Be true to your feelings. Remember that it’s okay to be in a bad mood.
Acting cheerful won’t give others a real picture of how you feel, and
holding in your true feelings may even be harmful.
■ Turn to community resources for help. A support group or a counselor
might be able to provide more support.
30
31
Chapter 4
Talking to your health care team
When you first learn you have cancer, daily life can feel like it is turned
upside down. Learning more about your type of cancer and its treatment can
help you feel more in control.
Learn about your type of cancer and its treatment by:
■ asking your health care providers questions
■ taking notes during your doctor visits
■ getting a second opinion
■ calling the Cancer Information Service at 1-800-422-6237
■ looking up your type of cancer on the Internet at http://www.cancer.gov
■ visiting a public library or a hospital library for patients and families
Learning about your cancer can help you talk to your doctor about which
treatment is right for you.
“At first, I felt overwhelmed. But once I
gathered information, I felt comfortable talking
with my doctor about my cancer and ready to
make decisions about my treatment.”
Cancer can rob people of a sense of control over their lives. You may feel that
your future is uncertain and you don’t know if you are going to live. Or you may
rely on doctors you hardly know to help you make health decisions.
People often feel more in control when they learn as much as they can about cancer
and its treatment. They say that it is easier to make decisions when they know what
to expect. How much do you know about your cancer and its treatment?
32
Learning from your health care providers
Doctors, nurses, and other health care providers can teach you a lot about cancer
and its treatment. But sometimes people have trouble learning because they’re
scared or confused. These feelings can make it hard to learn new information.
When anxiety goes up, it makes it harder to remember things. But, there are
things you can do to make it easier to learn.
Ask your doctor or nurse to write down the name and stage of
your cancer.
There are many different types of cancer and each type has its own name. “Stage”
refers to the size of the cancer tumor and how far it has spread in your body.
Knowing the name and stage of your cancer will help:
■ you find out more about your cancer
■ your doctor and you decide what treatment choices you have
Ask as many questions as you need to.
Your doctor needs to know your questions and concerns. Write down your
questions and bring them with you to the doctor’s visit. Sometimes you can even
send your questions ahead of time. Your doctor can get information ready for you
if he or she knows your questions in advance. If you have a lot of questions, you
and your doctor may want to plan extra time to talk about them.
Don’t worry if your questions seem silly or don’t make sense.
All your questions are important and deserve an answer. It’s okay to ask the same
question more than once. It’s also okay to ask your doctor to use simpler words
and explain terms that are new to you. To make sure you understand, use your
own words to repeat back what you heard the doctor say.
Take someone with you when you see the doctor.
Ask a family member or friend to go with you when you see your doctor. This
person can help by listening, taking notes, and asking questions. Later, you can
both talk about what the doctor had to say. If you can’t find someone to go with
you, ask your doctor if he or she will talk with a friend or family member over
the phone. 
33
Take notes or record your conversation with your doctor.
Many patients have trouble remembering what they talk about with their doctor.
Ask if you can take notes or make a recording. Review these notes or listen to the
tape later. This can help you remember what you talked about. You might also
want to let your family and friends see these notes so that they, too, can learn
what the doctor had to say.
Every road has two directions.
—Russian Proverb
Learning about your treatment choices
You can learn about your treatment choices by:
■ asking your doctor
■ getting a second opinion
■ calling the Cancer Information Service (see below)
■ reading about your type of cancer on the Internet
Ask your doctor to tell you about your treatment choices. Sometimes there is
more than one treatment that can help. Ask how each treatment can help and
what side effects (reactions to the treatment) you might have. If your doctor asks
you to choose which treatment you want, try to learn all you can about each
choice. Let your doctor know if you need more time to think about these issues
before your treatment begins.
Get a second opinion from a doctor who takes care of cancer patients (an
oncologist). The oncologist may agree with your first doctor’s treatment plan. Or
he or she may suggest something else. Many health insurance plans pay for a
second opinion. Read your policy, call your insurance company, or sp

llllllllllllllllllllllllll
lllllllllllllllllllllllllll
llllllllllllllllllll

Taking Time -  Support for People With Cancer
National Cancer Institute
U.S. Department
of HealtH anD
HUman ServiceS
national institutes
of Health 
For more information . . .
This booklet is only one of many free booklets for people with cancer.
Here are some others you and your loved ones may find useful:
•     Biological Therapy: Treatments That Use Your Immune System
To Fight Cancer
•     Chemotherapy and You
•     Eating Hints Before, During, and After Cancer Treatment
•     Taking Part in Cancer Treatment Research Studies
•     Pain Control
•     Radiation Therapy and You
•     Taking Time
•     Thinking About Complementary and Alternative Medicine
•     When Your Parent Has Cancer: A Guide for Teens
•     When Someone You Love Is Being Treated for Cancer
•     When Someone You Love Has Advanced Cancer
These booklets are available online from the National Cancer Institute
(NCI). To learn more about the specific type of cancer you have or to
view any of these booklets, visit NCI’s Web site (www.cancer.gov). You
can also call NCI’s Cancer Information Service at 1-800-4-CANCER
(1-800-422-6237) to speak with an information specialist. 

When Cancer Returns

“When I found out I had cancer again,
I just felt numb. It was hard for me
to accept the news at first.
After a few weeks, though, I started
to really look at all my options
and things I could do for myself.
By doing this, it gave me back
some control.” 

Table of Contents
1. Adjusting to the News.........................................................................1

2. Why and Where Cancer Returns .......................................................2

3. Taking Control: Your Care and Treatment........................................3

4. Managing the Side Effects of Your Treatment ..................................7

5. Your Feelings.....................................................................................13

6. Setting Goals .....................................................................................22

7. Family and Friends ...........................................................................23

8. Looking for Meaning ........................................................................26

9. A Time To Reflect ..............................................................................27

10. Words To Know .................................................................................28

11. Resources ..........................................................................................31

Words that appear in bold in the text are defined in the
Words To Know section on page 28. 
chapter 1
Adjusting to the News
Maybe in the back of your mind, you feared that your cancer might return. Now you might be 

thinking, “How can this be happening to me again? Haven’t I been through enough?”

You may be feeling shocked, angry, sad, or scared. Many people have these feelings. But you 

have something now that you didn’t have before—experience. You’ve lived through cancer 

once. You know a lot about what to expect and hope for. 

Also remember that treatments may have improved since you had your first cancer. 

New drugs or methods may help with your treatment or in managing side effects. 

In fact, cancer is now often thought of as a chronic disease, one which people manage 

for many years. 

Using This Booklet
This booklet offers some general advice as you adjust to the news that your cancer has
returned. It covers all aspects of your treatment. These include managing side effects and
symptoms, as well as seeking emotional support.
Above all else, remember that your feelings count. There is no “right” way to cope. Some
people need a lot of information. Others like a little at a time. Likewise, some sections in this
booklet may address your needs. Others may not.
n     Flip through the Table of Contents to look for topics you need.
n     Using this guide along with those booklets listed on the inside front cover may help you
find the information that you need.
1

“One minute everything was fine, and then my doctor
dropped the bomb that my cancer had come back. In
five minutes, my life had changed again.” —Dorothy 
chapter 2
Why and Where Cancer Returns
“I was floored. I thought all the cancer was gone. I was just getting back to a
normal life. I was even more surprised that it came back in a different place.
But I didn’t care where it was. I just wanted it to go away.” —Ronald
When cancer comes back, doctors call it a recurrence (or recurrent cancer).
Some things you should know are:
n A recurrent cancer starts with cancer cells that the first treatment didn’t fully remove or
destroy. Some may have been too small to be seen in follow-up. This doesn’t mean that
the treatment you received was wrong. And it
doesn’t mean that you did anything wrong,
either. It just means that a small number of
cancer cells survived the treatment. These cells
grew over time into tumors or cancer that your
doctor can now detect.
n When cancer comes back, it doesn’t always
show up in the same part of the body. For
example, if you had colon cancer, it may
come back in your liver. But the cancer is
still called colon cancer. When the original
cancer spreads to a new place, it is called a
metastasis (meh-TAS-tuh-sis).
n It is possible to develop a completely new
cancer that has nothing to do with your
original cancer. But this doesn’t happen
very often. Recurrences are more common.
Where Cancer Can Return
Doctors define recurrent cancers by
where they develop. The different
types of recurrence are:
n Local recurrence. This means
that the cancer is in the same
place as the original cancer or is
very close to it.
n Regional recurrence. This is
when tumors grow in lymph
nodes or tissues near the place
of the original cancer.
n Distant recurrence. In these
cases, the cancer has spread
(metastasized) to organs or
tissues far from the place of the
original cancer.
Local cancer may be easier to treat
than regional or distant cancer.
But this can be different for each
patient. Talk with your doctor
about your options.
2
chapter 3
Taking Control: Your Care and Treatment
Cancer that returns can affect all parts of your life. You may feel weak and no longer in control.
But you don’t have to feel that way. You can take part in your care and in making decisions.
You can also talk with your health care team and loved ones as you decide about your care.
This may help you feel a sense of control and well-being.
Talking With Your Health Care Team
“I always ask lots of questions because I want to be ready just in case
something happens. I really do believe that everyone taking care of me has
my best interests at heart. But I worry that if I don’t ask about everything,
they may forget to give me the answers.” —Bonita
Many people have a treatment team of health providers who work together to help them. This
team may include doctors, nurses, oncology social workers, dietitians, or other specialists.
Some people don’t like to ask about treatment choices or side effects. They think that doctors
don’t like being questioned. But this is not true. Most doctors want their patients to be
involved in their own care. They want patients to discuss concerns with them.
Here are a few topics you may want to discuss with your health care team:
n     Pain or Other Symptoms. Be honest and open about how you feel. Tell your doctors if
you have pain and where. Tell them what you expect in the way of pain relief. (See Chapter
4 for more about pain and other symptoms.)
n     Communication. Some people want to know details about their care. Others prefer to
know as little as possible. Some people with cancer want their family members to make
most of their decisions. What would you prefer? Decide what you want to know, how much
you want to know, and when you’ve heard enough. Choose what is most comfortable for
you. Then tell your doctor and family members. Ask that they follow through with your
wishes.
n     Family Wishes. Some family members may have trouble dealing with cancer. They don’t
want to know how far the disease has advanced. Find out from your family members how
much they want to know. And be sure to tell your doctors and nurses. Do this as soon as
possible. It will help avoid conflicts or distress among your loved ones. (See page 23 to read
more about talking with your loved ones.)
3

xxxxxxxxxxxxxxx
xxxxxxxxxxxxxxx

vvvvvvvvvvvvvvvvvvvvv

Support for People With Cancer
Coping With
Advanced Cancer
National Cancer Institute
U.S. DEPARTMENT
OF HEALTH AND
HUMAN SERVICES
National Institutes
of Health
For more information . . .
This booklet is only one of many free booklets for people with
cancer. Here are some others you and your loved ones may
find useful:
• Chemotherapy and You
• Eating Hints for Cancer Patients
• Taking Part in Cancer Treatment Research Studies
• Pain Control
• Radiation Therapy and You
• Taking Time: Support for People With Cancer
• Thinking About Complementary and Alternative Medicine:
A Guide for People With Cancer
• When Your Parent Has Cancer: A Guide for Teens
• When Someone You Love Is Being Treated for Cancer:
Support for Caregivers
• When Someone You Love Has Advanced Cancer: Support for
Caregivers
These booklets are available online from the National Cancer
Institute (NCI). To learn more about the specific type of cancer
you have or to request any of these booklets, visit NCI’s website
(http://www.cancer.gov). You can also call NCI’s Cancer
Information Service at 1-800-4-CANCER (1-800-422-6237) to
speak with an information specialist.

Coping With Advanced Cancer
“What lies behind us
and what lies before us
are tiny matters
compared to what lies
within us.”
—Ralph Waldo Emerson

Contents
1. About This Booklet............................................................................... 1
2. Making Choices About Care ............................................................... 3
3. Talking With Your Health Care Team................................................ 9
4. Getting Help for Your Symptoms .....................................................13
5. Coping With Your Feelings ...............................................................21
6. Advance Planning...............................................................................31
7. Talking With the Special People in Your Life..................................35
8. Looking for Meaning..........................................................................39
9. Closing Thoughts................................................................................43
10. Resources .............................................................................................44
11. Words to Know....................................................................................47
12. Personal Affairs Worksheet ...............................................................50
“I have good days and bad
days. But I try to let there
be more good ones than
bad, and focus on things in
my life that I can control.
I just do the best I can,
enjoying family, friends,
and the little things in
life.”—Louise
1
CHAPTER 1
About This Booklet
You’ve struggled with the diagnosis, treatment, and maybe the recurrence of cancer. Now
doctors may have told you that you have advanced cancer. They may have said that your
cancer is not responding to treatment and that long-term remission is no longer likely. Or
they may have said they have run out of standard treatment options. However you learn
the news, it can be devastating to you and your loved ones. Often it’s hard to believe or
accept at first.
Having advanced cancer can bring anxiety and uncertainty to your life. But some people
with advanced cancer live far longer than expected. And remember, you are still in control
of your choices and actions. Having an advanced disease can be a time of personal growth.
It can even be a time of second chances. Many people say they started to see life in a new
way after learning that their cancer had progressed despite treatment. They realized the
importance of making the most of each day.
This booklet stresses four main points:
■ Learning more about ways you can help yourself may ease some of your concerns.
■ Your treatment may change, but as always, you deserve to ask for and receive good
medical attention from your health care team and support from your caregivers.
■ It’s important to talk about your worries, frustrations, and problems, and get support
from others. In fact, it may be one of the best things you can do for yourself.
■ As your medical care changes, you still have many choices. You can choose the way you
wish to live each day.
“There are lots of things I still want to do, but I know that I may not be
able to do them the way I planned. But that doesn’t stop me from trying to
achieve them in a different way.” —Millie
Reading This Booklet
No two people are alike. Some chapters of this booklet may apply to you, while others
may not. Or some may be more useful later on. As you read this booklet, choose the parts
that are right for you. Share it with your family members and loved ones. They may find it
helpful to read it with you. Keep in mind that this booklet is for you, an adult with advanced
cancer, and the people close to you. For other information for a parent or loved one of a
child or young person with cancer, see the NCI booklet, Young People With Cancer. Your
friends and family members may also want to see the NCI booklet, When Someone You Love
Has Advanced Cancer.
Above all else, try to remember that you are still in charge of your life. It may be hard
to do this with all that you are going through. You may have trouble coping with your
feelings from time to time. Or you may be grieving that your life has gone a different
way than you had hoped. It’s natural to feel negative at times. You’ll have ups and downs.
We hope this booklet will help you. Our goal is to help you stay in control as much as
you can, and make the rest of your life fulfilling and satisfying. You can still have hope
and joy in your life, even as you cope with what lies ahead.
2
3
CHAPTER 2
Making Choices About Care
People have different goals for care when dealing with advanced cancer. And your goals
for care may be changing. Perhaps you had been hoping for a remission. Yet now you need
to think more about controlling the spread or growth of the cancer. Your decisions about
treatment will be very personal. You will want to seek the help of your loved ones and health
care providers. But only you can decide what to do. Your desire to avoid future regrets
should be measured against the positives and negatives of treatment.
Questions you may want to ask:
■ What’s the best we can hope for by trying another treatment? What is the goal?
■ Is this treatment plan meant to help side effects, slow the spread of cancer, or both?
■ Is there a chance that a new treatment will be found while we try the old one?
■ What’s the most likely result of trying this treatment?
■ What are the possible side effects and other downsides of the treatment? How likely
are they?
■ Are the possible rewards bigger than the possible drawbacks?
It is important to ask your health care team what to expect in the future. It’s also important
to be clear with them about how much information you want to receive from them.
Comfort Care
You have a right to comfort care both during and after treatment. This kind of care is often
called palliative care. It includes treating or preventing cancer symptoms and the side
effects caused by treatment. Comfort care can also mean getting help with emotional and
spiritual problems during and after cancer treatment. Sometimes patients don’t want to
tell the doctor about their symptoms. They only want to focus on the cancer. Yet you can
improve your quality of life with comfort care.
People once thought of palliative care as a way to comfort those dying of cancer. Doctors
now offer this care to all cancer patients, beginning when the cancer is diagnosed. You
should receive palliative care through treatment, survival, and advanced disease. Your
oncologist may be able to help you. But a palliative care specialist may be the best person to
treat some problems. Ask your doctor or nurse if there is a specialist you can go to.
“There’s a part of me that
wants to keep fighting
and try a clinical trial; the
other part wants to stop
fighting. I’m just so tired
of it all. Yet I can’t help
wondering if there are
other options.” —John
4
5
Your Choices
You have a number of options for your care. These depend on the type of cancer you have
and the goals you have for your care. Your health care team should tell you about any
procedures and treatments available, as well as the benefits and risks of those treatments.
Options include:
■ Clinical trials
■ Palliative radiation, chemotherapy, or surgery
■ Hospice care
■ Home care
Many patients choose more than one option. Ask all the questions you need to.
Try to base your decision on your own feelings about life and death, and the pros and cons
of cancer treatment. If you choose not to receive any more active cancer treatment, it does
not necessarily mean a quick decline and death. It also does not mean you will stop being
given palliative care. Your health care team can offer information and advice on options.
You also may want to talk about these options with family members and others who are
close to you.
Clinical Trials
Treatment clinical trials are research studies that try to find better ways to treat cancer.
Every day, cancer researchers learn more about treatment options from clinical trials. The
different types of clinical trials are:
■ Phase 1 trials test how to give a drug, how often it should be given, and what dose is
safe. Usually, only a small number of patients take part.
■ Phase 2 trials discover how cancer responds to a new drug treatment. More patients
take part.
■ Phase 3 trials compare an accepted cancer treatment (standard treatment) with a new
treatment that researchers hope is better. More treatment centers and patients take part.
If you decide to try a clinical trial, the trial you choose will depend on the type of cancer
you have. It will also depend on the treatments you have already received. Each study has
rules about who can take part. These rules may include the patient’s age, health, and type of
cancer. Clinical trials have both benefits and risks. Your doctor and the study doctors should
tell you about these before you make any decisions.
Taking part in a clinical trial could help you and help others who get cancer in the future.
But insurance and managed care plans do not always cover costs. What they cover varies by
plan and by study. Talk with your health care team to learn more about coverage for clinical
trials for your type of cancer.
“I know that just because
I have stage-4 cancer
doesn’t mean I’m going to
die tomorrow. My friend
has lived a long time with
her advanced cancer.” —Li
6
7
For more information about clinical trials, see NCI’s booklet, Taking Part in Cancer
Treatment Research Studies. Or talk to the NCI’s Cancer Information Service at
1-800-422-6237 (1-800-4-CANCER).
Palliative Radiation, Chemotherapy, or Surgery
Some palliative chemotherapy and palliative radiation may help relieve pain and other
symptoms. In this way, they may improve your quality of life, even if they don’t stop your
cancer. These treatments may be given to
remove or shrink a tumor. Or they may
be given to slow down a tumor’s spread.
Palliative surgery is sometimes used to
relieve pain or other problems.
For more information, see the NCI booklets
Chemotherapy and You and Radiation
Therapy and You.
Hospice
Hospice care is an option if you feel you are no longer benefiting from cancer treatments.
Choosing hospice care doesn’t mean that you’ve given up. It just means the treatment
goals are different at this point. It does not mean giving up hope, but rather changing what
you hope for. But be sure to check with the hospice you use to learn what treatments and
services are covered. Check with your insurance company also. The goal of hospice is to help
patients live each day to the fullest by making them comfortable and lessen their symptoms.
Hospice doctors, nurses, spiritual leaders, social workers, and volunteers are specially
trained. They are dedicated to supporting their patients’ and families’ emotional, social, and
spiritual needs, as well as dealing with patients’ medical symptoms.
People usually qualify for hospice services when their doctor signs a statement that says
that patients with their type and stage of disease, on average, aren’t likely to survive beyond
6 months. Many people don’t realize that they can use hospice services for a number of
months, not just a few weeks. In fact, many say they wish they had gotten hospice care much
sooner than they did. They were surprised by the expert care and understanding that they
got. Often, control of symptoms not only improves quality of life but also helps people live
longer. You will be reviewed periodically to see if hospice care is still right for you. Services
may include:
■ Doctor services
■ Nursing care
■ Medical supplies and equipment
■ Drugs to manage cancer-related symptoms and pain
■ Short-term in-patient care
■ Homemaker and home health
aide services
■ Respite (relief) services for caregivers.
This means someone else helps with
care for awhile, so the caregiver can
take a break
■ Counseling
■ Social work services
■ Spiritual care
■ Bereavement (grief) counseling
and support
■ Volunteer services
Home Care
Home care services are for people who are at
home rather than in a hospital. Home care
services may include:
■ Monitoring care
■ Managing symptoms
■ Providing medical equipment
■ Physical and other therapies
You may have to pay for home care services
yourself. Check with your insurance
company. Medicare, Medicaid, and private
insurance will sometimes cover home care
services when ordered by your doctor. But
some rules apply. So talk to your social
worker and other members of your health
care team to find out more.
Hospice and Home Care
What to Expect With Hospice Care
You can get hospice services at home, in
special facilities, in hospitals, and in nursing
homes. They have specialists to help guide
care. They also have nurses on call 24 hours
a day in case you need advice. And they
have many volunteers who help families care
for their loved one. Some hospices will give
palliative chemotherapy at home as well.
Hospice care doesn’t seek to treat cancer, but
it does treat reversible problems with brief
hospital stays if needed. An example might
be pneumonia or a bladder infection.
Medicare, Medicaid, and most private
insurers cover hospice services. For those
without coverage and in financial need,
many hospices provide care for free. To learn
more about hospice care, call the National
Hospice and Palliative Care Organization
at 1-800-658-8898. Or visit their website at
http://www.nhpco.org. The website can also
help you find a hospice in your community.
Benefits of Hospice and Home Care
Hospice and home care professionals can
help you and your family work through
some tough emotional issues. A social
worker can offer emotional support, help in
planning hospice or home care, and ease the
move between types of care. Many people
prefer the comfort of their own home,
familiar surroundings, and having friends
and family members nearby. Getting health
care at home gives family members, friends,
and neighbors the chance to spend time
with you and help with your care.
8
CHAPTER 3
Talking With Your Health Care Team
As your disease advances, it’s still important to give feedback to your doctor. That’s the only
way he or she can know what is working for you. Many people have a treatment team of health
providers who work together to help them. This team may include doctors, nurses, oncology
social workers, dietitians, and other specialists. They need to fully know your desires during
treatment and at the end of your life. Let them know about any discomfort you have. You have
a right to live your remaining days with dignity and peace of mind. So it’s important to have a
relationship and an understanding with those who will be caring for you.
Here are just a few topics you may want
to discuss with your doctor or other
members of your health care team:
■ Pain or other symptoms. Be
honest and open about how you feel.
Tell your doctor if you have pain
and where. Also tell him or her what
you expect in the way of pain relief.
(See Chapter 4 for more about pain
and other symptoms.)
■ Communication. Some people
want to know details about their care. Others prefer to know as little as possible. Some
patients want their family members to make most of their decisions. What would you
prefer? Decide what you want to know, how much you want to know, and when you’ve
heard enough. Choose what is most comfortable for you, then tell your doctor and
family members. Ask that they follow through with your wishes.
■ Family wishes. Some family members may have trouble dealing with cancer. They don’t
want to know how far the disease has advanced or how much time doctors think you
have. Find out from your family members how much they want to know, and tell your
health care team their wishes. Do this as soon as possible. It will help avoid conflicts or
distress among your loved ones. (See Chapter 7 for more on talking to your loved ones.)
Remember that only you and those closest to you can answer many of these questions.
Having answers to your questions can help you know what to expect now and in the future.
“My doctor said, ‘The cancer is spreading to your lungs,’ and from that
moment on, I didn’t hear a word he said. He started talking about my
options, but all I saw were lips moving. I was in total shock.” —Tyrone
9
“I told the doctor when I first
met him that I needed honesty
from him; otherwise, I didn’t
want to work with him. So
he promised me he would be
honest, and he was. He said,
‘You’ve got stage-4 lung cancer.
You have 3 months to 2 years if
everything works well.’ I needed
to know everything.”—Patrice
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11
Tips for Meeting With Your
Health Care Team
■ Make a list of your questions before
each appointment.
■ Bring a family member or trusted friend
with you to your medical visits. This person
can help you remember what the doctor or
nurse said, and talk with you about it after
the visit.
■ Ask all your questions. If you do not
understand an answer, keep asking until
you do. There is no such thing as a
“stupid” question.
■ Take notes. You can do this or you can ask
a family member or friend to take them
for you. Or you can ask if it’s okay to use a
tape recorder.
■ Get a phone number of someone to call with
follow-up questions.
■ Keep a file or notebook of all the papers and
test results that your doctor has given you.
Take this with you to your visits. Also keep
records or a diary of all your visits. List the
drugs and tests you have taken.
■ Keep a record of any upsetting symptoms or
side effects you have. Note when and where
they occur. Take this with you on your visits.
■ Find out what to do in an emergency. This
includes whom to call, how to reach them,
and where to go.
No One Knows the Future
It’s normal for people to want to
know how long they will have to
live. It’s also natural to want to
prepare for what lies ahead. You
may want to prepare emotionally
as well as to make certain
arrangements and plans.
But predicting how long someone
will live is not exact. Your doctor
may be able to give you an estimate,
but keep in mind that it’s a guess.
Every patient is different. Your
doctor has to take into account
your type of cancer, treatment, past
illnesses, and other factors.
Some patients live long past the
time the doctor first predicted.
Others live a shorter time. Also, an
infection or other complication
could happen and change things.
Your doctor may know your
situation best, but even he or she
cannot know the answer for sure.
And doctors don’t always feel
comfortable trying to give you
an answer.
In truth, none of us knows when we
are going to die. Unexpected events
happen every day. The best we can
do is try to live fully and for today.
“The nighttime is harder
than during the day. There’s
not all that routine going
on to take my mind off
of things. Sometimes I fall
asleep, but then wake up
in the middle of the night
sweaty and shaky.” —Susan
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13
CHAPTER 4
Getting Help for Your Symptoms
Cancer and its treatment affect people differently. Some have symptoms, while others
have no symptoms for a long time. As we said earlier, you have a right to comfort care
throughout your illness.
Sometimes people assume their symptoms will get worse as their cancer progresses. But
with good supports in place and good care, your symptoms should always be managed.
So don’t downplay your symptoms if you’re having them. It’s important to report how you
are feeling. Tell your doctor, members of your health care team, and your loved ones. If
you feel very sick or tired, your doctor may be able to adjust your treatment or give you
other medicine.
Following are some of the symptoms you may have.
Pain
Having cancer doesn’t always mean that you’ll have pain. But if you do, you shouldn’t
accept pain as normal. Most types of pain can be treated. Your doctor can control pain with
different medicines and treatments.
You may want to ask your doctor if you can talk to a pain specialist. Many hospitals have
doctors on staff who are experts at treating pain. They may also have palliative medicine
specialists.
Managing your pain helps you sleep and eat better. It makes it easier to enjoy your family
and friends and focus on what gives you joy.
There are a few different ways to take pain medicine, including:
■ By mouth
■ Through the skin (like with a patch)
■ By shots
■ Through an I.V. or an S.C. pump
Your medicine, and how you take it, will depend on the type of pain and its cause. For
example, for constant pain you may need a steady dose of medicine over a long period of
time. You might use a patch placed on the skin or a slow-release pill.
Controlling Pain
What to Tell Your Doctor
When describing pain to your doctor,
be as detailed as you can. Your doctor
may ask:
■ Where exactly is your pain? Does it
move from one spot to another?
■ How does the pain feel—dull, sharp,
burning?
■ How often does your pain occur?
■ How long does it last?
■ Does it start at a certain time—
morning, afternoon, night?
■ What makes the pain better? What
makes it worse?
Using Strong Drugs To
Control Pain
People with cancer often need strong
medicine to help control their pain.
Don’t be afraid to ask for pain medicine
or for larger doses if you need them. The
drugs will help you stay as comfortable
as you can be.
When treating pain in people with
cancer, addiction is not an issue. Sadly,
fears of addiction sometimes prevent
people from taking medicine for pain.
The same fears also prompt family
members to encourage loved ones to
“hold off” between doses. But people in
pain get the most relief when they take
their medicines and treatments on a
regular schedule.
Medicines can be used for all types of pain,
including:
■ Mild to medium pain
■ Medium to very bad pain
■ Breakthrough pain
■ Tingling and burning pain
■ Pain caused by swelling
You should have regular talks with your healthcare
team about the type and extent of your pain. That’s
because pain can change throughout your illness.
Let them know the kind of pain you have, how bad
it is, and where it hurts.
You may want to keep a “pain diary.” Write down
the time of day that the pain occurred and what
you were doing. Rate the pain on a scale of 0 to
10. (Zero means no pain, and 10 is the worst pain
you could have.) Use the diary when you talk to
your doctor about your pain.
Unlike other medicines, there is no “right” dose
for many pain medicines. Yours may be larger
or smaller than someone else’s. The right dose is
the one that relieves your pain and makes you
feel better. (For more information on pain, see
the NCI booklet, Pain Control.)
Other Ways To Treat Pain
Cancer pain is usually treated with medicine and
other therapies. But there are also some non-drug
treatments. They are forms of complementary
and alternative medicine (CAM). Many people
have found the methods listed below helpful.
But talk with your health care team before trying
any of them. Make sure they are safe and won’t
interfere with your cancer treatment.
■ Acupuncture is a form of Chinese medicine
that stimulates certain points on the body
using small needles. It may help treat nausea
and control pain. Before using acupuncture,
ask your health care team if it is safe for your
type of cancer.
14
15
■ Imagery is imagining scenes, pictures, or experiences to feel calmer or perhaps to help
the body heal.
■ Relaxation techniques include deep breathing and exercises to relax your muscles.
■ Hypnosis is a state of relaxed and focused attention. One focuses on a certain feeling,
idea, or suggestion.
■ Biofeedback is the use of a special machine to help the patient learn how to control
certain body functions. These are things that we are normally not aware of (such as
heart rate).
■ Massage therapy brings relaxation and a sense of well-being by the gentle rubbing of
different body parts or muscles. Before you try this, you need to check with your doctor.
Massage is not recommended for some kinds of cancer.
These methods may also help manage stress. Again, talk to your health care team before
using anything new, no matter how safe it may seem. Ask your health care team for more
information about where to get these treatments. To learn more, see the NCI booklets
Thinking About Complementary and Alternative Medicine and Pain Control.
Anxiety
Cancer takes a toll on both your body and your mind. You are coping with many different
things now. You may feel overwhelmed. Pain and medicines for pain can also make you feel
anxious or depressed. And you may be more likely to feel this way if you have had these
feelings before.
Here are some signs of anxiety:
■ Feeling very tense and nervous
■ Racing heartbeat
■ Sweating a lot
■ Trouble breathing or catching your breath
■ A lump in your throat or a knot in your stomach
■ Sudden fear
Feeling anxious can be normal. But if it begins disrupting your daily life, ask for help from
the members of your health care team. They can recommend someone for you to talk
to. Counseling from a mental health professional has been shown to help many people
cope with anxiety. Your doctor can also give you medicines that will help. Some of the
complementary and alternative medicine choices listed above for pain may work for your
anxiety as well. Art therapy and music therapy have also helped people cope.
Fatigue
Fatigue is more than feeling tired. Fatigue
is exhaustion—not being able to do even
the small things you used to do. A number
of things can cause fatigue. Besides cancer
and its treatment, they include anxiety,
stress, and changes in your diet or sleeping
patterns. If you are having some of these
problems, you might want to:
■ Tell your health care team at your next visit. Some medicines can help with fatigue.
■ Ask about your nutrition needs.
■ Plan your daily activities. Do only what you really must do.
■ Hand over tasks to others who are willing to help you.
■ Include short periods of rest and relaxation every day.
■ Take naps (no longer than 15-30 minutes).
■ Ask others for help, especially when you are feeling fatigued.
■ Do light exercises that are practical for you.
Nausea and Vomiting
Nausea and vomiting may be a problem for cancer patients. Both can make you feel very
tired. They can also make it hard to get treatments or to care for yourself. If you feel sick to
your stomach or are throwing up, there are many drugs to help you. Ask your health care
team which medicines might work best for your nausea and vomiting.
You also may want to:
■ Make small changes in your diet. Eat small amounts 5–6 times a day.
■ Avoid foods that are sweet, fatty, salty, spicy, or have strong smells. These may make
nausea and vomiting worse.
■ Drink as much liquid as possible. You’ll want to keep your body from getting dried
out (dehydrated). Water, broth, juices, clear soft drinks, ice cream, and watermelon
are good choices.
■ Choose cool foods, which may help more than hot ones.
■ Try acupuncture.
16
Constipation
Constipation is a problem in which stool becomes hard, dry, and difficult to pass, and
bowel movements do not happen very often. Other symptoms may include painful bowel
movements, and feeling bloated, uncomfortable, and sluggish. Chemotherapy, as well as
other medicines (especially those used for pain), can cause constipation. It can also happen
when people become less active and spend more time sitting or lying down.
Here are some ways to help manage constipation:
■ Drink plenty of fluids each day. Many people find that drinking warm or hot fluids
helps with bowel movements.
■ Be active. You can be active by walking, doing water aerobics, or yoga. If you cannot
walk, talk with your doctor or nurse about ways you can be active, such as doing
exercises in bed or a chair.
■ Ask your doctor, nurse, or dietitian if you should eat more fiber. He or she may
suggest you eat bran, whole wheat bread and cereal, raw or cooked vegetables, fresh and
dried fruit, nuts, and popcorn and other high-fiber foods.
■ Let your doctor or nurse know if you are in pain or discomfort from not having
a bowel movement. He or she may suggest you use an enema or take a laxative or stool
softener. Check with your doctor or nurse before using any of these.
■ Ask your doctor about giving you laxatives when you start to take pain
medications. Taking a stool softener at the same time you start taking pain drugs may
prevent the problem.
Loss of Appetite and Body Changes
Eating and appetite changes are common in the later stages of cancer. As your cancer
progresses, your appetite may become poor.
On the other hand, you may be eating enough, but your body can’t absorb the nutrients.
This can cause you to lose weight, fat, and muscle.
Nutrition goals may become less important at this time. Even if your family members think
you should have food, let your body be the judge. The goal should not be weight gain or
improving your eating but rather comfort and symptom relief.
Your nurse, dietitian, and other members of your health care team can help. They can help
you decide on changes to your diet that may be needed to keep you as healthy as possible.
There are also new drugs to improve appetite and get rid of nausea. Ask your health care
team about them.
17
18
Sleep Problems
Illness, pain, drugs, being in the hospital,
and stress can cause sleep problems. Sleep
problems may include:
■ Having trouble falling asleep
■ Sleeping only in short amounts of time
■ Waking up in the middle of the night
■ Having trouble getting back to sleep
To help with your sleep problem, you may want to try:
■ Reducing noise, dimming the lights, making the room warmer or cooler, and using
pillows to support your body
■ Dressing in soft, loose clothing
■ Going to the bathroom before bed
■ Eating a high-protein snack 2 hours before bedtime (such as peanut butter, cheese, nuts,
or some sliced chicken or turkey)
■ Avoiding caffeine (coffee, teas, colas, hot cocoa)
■ Keeping regular sleep hours (avoid naps longer than 15-30 minutes)
■ Talking with your health care team about drugs to help you sleep. These may give relief
on a short-term basis.
Confusion
You may start noticing signs that you feel confused. This can occur in some people with
advanced stage cancer. It can also be caused by some medicines. Confusion may begin
suddenly or come and go during the day. Possible signs include:
■ Sudden changes in feelings (such as feeling calm then suddenly becoming angry)
■ Having trouble paying attention or concentrating (such as feeling easily distracted,
having trouble answering questions, or finding it harder to do tasks that involve logic,
such as math problems)
■ Memory and awareness problems (such as forgetting where you are and what day it
is or forgetting recent events)
19
If you notice these signs, talk to your health care team to try to find out the cause.
Meanwhile, try one or more of the following to help relieve confusion:
■ Go to a quiet, well-lit room with familiar objects.
■ Reduce noise.
■ Have family or loved ones nearby.
■ Put a clock or calendar where it can be seen.
■ Limit changes in caregivers.
■ Ask your health care team about drugs that may help.
For more information on symptoms and side effects,
see the NCI booklets:
■ Eating Hints
■ Chemotherapy and You
■ Radiation Therapy and You
■ Pain Control
“I feel it’s important to me
that I live each day to the
fullest, and make peace
with my relatives and
friends and develop loving
relationships with them.”
—Kate
20
21
CHAPTER 5
Coping With Your Feelings
You’ve probably felt a range of feelings during your cancer experience. You may have had
these feelings at other times in your life, too, but they may be more intense now.
There is no right or wrong way to feel. And there is no right or wrong way to react to your
feelings. Do what is most comfortable and useful for you.
You may relate to all of the feelings below or just a few. You may feel them at different times,
with some days being better than others. It may help to know that others have felt the same
way that you do. You may also want to read “Ways You Can Cope” on page 28. Some of the
things others have done to cope with their feelings may help you, too.
Hope
You can feel a sense of hope, despite your cancer. But what you hope for changes with time.
If you have been told that remission may not be possible, you can hope for other things.
These may include comfort, peace, acceptance, even joy. Hoping may give you a sense of
purpose. This, in itself, may help you feel better.
To build a sense of hope, set goals to look forward to each day. Plan something to get your
mind off the cancer. Here are some tips from others with advanced stage cancer:
■ Plan your days as you’ve always done.
■ Don’t stop doing the things you like to do just because you have cancer.
■ Find small things in life to look forward to each day. You can also set dates and events
to look forward to. Don’t limit yourself. Look for reasons to hope, while staying aware of
what’s at hand.
Inner Strength
“My biggest struggle is that I need help, but I don’t want people to give
me too much of it. I want to do what I can for myself. If I have to work at
something, there’s a reason to live.” —Will
People with cancer find strength they didn’t know they had. You may have felt overwhelmed
when you first learned that your doctors couldn’t control your cancer. And now you aren’t
coping as well as you did in the past. But your feelings of helplessness may change. You
may find physical and emotional reserves you didn’t know you had. Calling on your inner
strength can help revive your spirit.
22
Some people find it helpful to focus on the present instead of the past or future. They start a
new daily routine. They accept that it may have to be different from the old routine. Others
like to plan ahead and set goals. With places to go and things to do, life stretches out before
them. Others focus on the relationships they have with people close to them. Inner strength
is different for each person. So draw on the things in your life that are meaningful to you.
Look at other sections in this booklet for ways to tap into your inner strength.
Sadness and Depression
It’s normal to feel sad. You may have no energy or not want to eat. It’s okay to cry or express
your sadness in another way. You don’t have to be upbeat all the time or pretend to be
cheerful in front of others.
Pretending to feel okay when you don’t doesn’t help you feel better. And it may even create
barriers between you and your loved ones. So don’t hold it in. Do what feels natural to you.
Depression can happen if sadness or despair seems to take over your life. Some of the signs
below are normal during a time like this. Talk to your doctor if they last for more than 2
weeks. Some symptoms could be due to physical problems. It’s important to tell someone on
your health care team about them.
Signs of Depression
■ Feeling helpless or hopeless, or that life has no meaning
■ Having no interest in family, friends, hobbies, or things you used to enjoy
■ Losing your appetite
■ Feeling short-tempered and grouchy
■ Not being able to get certain thoughts out of your mind
■ Crying for long periods of time or many times each day
■ Thinking about hurting or killing yourself
■ Feeling “wired,” having racing thoughts or panic attacks
■ Having sleep problems, such as not being able to sleep, having nightmares, or sleeping
too much.
Your doctor can treat depression with medicine. He or she also may suggest that you talk
about your feelings. You can do this with a psychologist or counselor. Or you may want to
join a support group.
23
Grief
“I heard the doctor say, ‘I’m so sorry, but . . .’ and then I heard nothing else.
My head was spinning, and I kept saying to myself, ‘No, the doctor must be
making a mistake.’ ” —Rosa
We all cope with loss or the threat of loss in different ways. You may feel sadness, loneliness,
anger, fear, and guilt. Or you may find the way you think changes from time to time. For
example, you may get easily confused or feel lost. Or your thoughts may repeat themselves
over and over again. You may also find yourself low in energy. You may not want to do
things or see people. These are all normal reactions to grief.
What you grieve for is as varied as how you think and feel. You may be grieving for the loss
of your body as it used to be. You may grieve for the things you used to be able to do. You
also may grieve losing what you have left: yourself, your family, your friends, your future.
It’s okay to take time for yourself and look inward. It’s also okay to surround yourself with
people who are close to you. Let your loved ones know if you want to talk. Let them know if
you just want to sit quietly with them. There is no right or wrong way to grieve.
Often people who go through major change and loss need extra help. You can talk with a
member of your health care team, a member of your faith community, or a mental health
professional. You don’t have to go through this alone.
Denial
“I feel like the reality of this cancer isn’t going to go away if I deny it.
If I did that, I might miss the comfort I get from sharing fears and concerns.
I don’t want to miss the sense of well-being I have knowing I have taken
care of my loved ones.”—Carrie
It’s hard to accept the news that your cancer has spread or can no longer be controlled. And
it’s natural to need some time to adjust. But this can become a serious problem if it lasts
longer than a few weeks. It can keep you from getting the care you need or talking about
your treatment choices. As time passes, try to keep an open mind. Listen to what others
around you suggest for your care.
Anger
The feeling of “No, not me!” often changes to “Why me?”
or “What’s next?” You have a lot to deal with right now. It’s
normal and healthy to feel angry. You don’t have to pretend
that everything is okay. You may be mad at your doctor, family
members, neighbors, and even yourself. Some people get angry
with God and question their faith.
At first, anger can help by moving you to take action. You may
decide to learn more about different treatment options. Or you
may become more involved in the care you are getting. But anger doesn’t help if you hold it
in too long or take it out on others. Often the people closest to us are the ones who have to
deal with our anger, whether we want that or not.
It may help to figure out why you are angry. This isn’t always easy. Sometimes anger comes
from feelings that are hard to show, such as fear, panic, worry, or helplessness. But being
open and dealing with your anger may help you let go of it. Anger is also a form of energy. It
may help to express this energy through exercise or physical activity, art, or even just hitting
the bed with a pillow.
Stress
“Just because I love God and know where I’m going, doesn’t mean I’m not
stressed. I worry all the time about what’s to come. I try to focus on the
things I can control, but it’s not always easy.” —David
Everyone has stress, but most likely you’re having a lot more now. After all, you’re dealing
with many changes. Sometimes, you may not even notice that you’re stressed. But your
family and friends may see a change.
Anything that helps you feel calm or relaxed may help you. Try to think of things that you
enjoy. Some people say it helps to:
■ Exercise or take a walk.
■ Write thoughts and feelings in a journal.
■ Meditate, pray, or do relaxation exercises.
■ Talk with someone about your stress.
■ Do yoga or gentle stretching.
■ Listen to soothing music.
■ Express yourself through art.
24
Fear and Worry
“I have people around all day, but there’s nothing worse than waking up
alone and upset at 3:00 in the morning in a quiet, dark room. You have to
have someone you can call right then.” —Jamal
Facing the unknown is very hard. At times, you may feel scared of losing control of your life.
You may be afraid of becoming dependent on other people. You may be afraid of dying.
If you struggle with these fears, remember that many others have felt the same way. Some
people worry about what will happen to their loved ones in the future. Others worry about
money. Many people fear being in pain or feeling sick. All these fears are normal.
Sometimes patients or family members worry that talking about their fears will make the
cancer worse. This is not true. Thinking about getting sicker or dying is not going to make
your health worse. But it’s good to be hopeful and positive. It’s better for your health to
express your feelings, rather than hold them in.
Some people say it helps if you:
■ Know what to expect. Learn more about your illness and treatment options by asking
questions of your healthcare team.
■ Update your affairs. If you have not already done so, make sure your will and other
legal paperwork are in order. Then you won’t have to worry about it. (See Chapter 6.)
■ Try to work through your feelings. If you can, talk with someone you trust.
If you feel overwhelmed by fear, remember that others have felt this way, too. It’s okay to ask
for help.
25
Guilt and Regret
It’s normal for people with cancer to wonder if they did anything to add to their situation.
They may blame themselves for lifestyle choices. They may feel guilty because treatment
didn’t work. They may regret ignoring a symptom and waiting too long to go to the doctor.
Others worry that they didn’t follow the doctor’s orders in the right way.
It’s important to remember that the treatment failed you. You didn’t fail the treatment.
We can’t know why cancer happens to some people and not others. In any case, feeling guilty
won’t help—it can even stop you from taking action and getting the treatment you need. So, it’s
important for you to:
■ Try to let go of any mistakes you think you may have made.
■ Focus on things worthy of your time and energy.
■ Forgive yourself.
“I couldn’t stop thinking about what I could have done to slow down my
cancer. Maybe I should have gone to the doctor sooner, maybe I should have
given up sweets, maybe I should have done this, maybe I should have done
that. After talking about it with my social worker, she helped me see that
this is no one’s fault, especially mine.” —Erika
You may want to share these feelings with your loved ones. Some people blame themselves
for upsetting the people they love. Others worry that they’ll be a burden on their families.
If you feel this way too, take comfort in this: many family members have said it is an honor
and a privilege to care for their loved one. Many consider it a time when they can share
experiences and become closer to one another. Others say that caring for someone else
makes them take life more seriously and causes them to rethink their priorities.
Maybe you feel that you can’t talk openly about these things with your loved ones. If so,
counseling or a support group may be an option for you. Let your health care team know if
you would like to talk with someone.
26
27
Loneliness
“I know my friends try to
understand. It doesn’t matter what
I say though—they just don’t get
it. I can’t even begin to explain to
them how I feel or what’s going
on. I’m not saying it’s their fault or
anything. It’s just hard.” —Jennifer
You may feel alone, even if you have lots of
people around you who care. You may feel
that no one really understands what you’re
going through. And as the cancer progresses,
you may see family, friends, or coworkers
less often. You may find yourself alone more
than you would like. Some people may even
distance themselves from you because they
have a hard time coping with your cancer.
This can make you feel really alone.
Although some days may be harder than
others, remember that you aren’t alone. Keep
doing the things you’ve always done the best
you can. If you want to, tell people that you
don’t want to be alone. Let them know that
you welcome their visits.
More than likely, your loved ones are feeling
many of the same things you are. They, too,
may feel cut off from you if they can’t talk
with you. You may also want to try joining
a support group. There you can talk with
others who share your feelings.
Finding Humor
Laughter can help you relax. Even a
smile can fight off stressful thoughts.
Of course, you may not always feel like
laughing, but other people have found
these ideas can help:
■ Enjoy funny things children and
pets do.
■ Watch funny movies or TV shows.
■ Read a joke book or look at jokes
on the Internet. If you don’t own
a computer, use one at your local
library. Or ask a friend to print
some for you.
■ Listen to comedy recordings.
■ Read the comics in the newspaper
or the cartoons and quotes in
magazines.
■ Look in the humor section in the
library or book store.
28
About Support Groups
You may have heard about
support groups in your area for
people with cancer. They can
meet in person, by phone, or
over the Internet. They may help
you gain new insights into what’s
happening, get ideas about how
to cope, and help you know that
you’re not alone.
In a support group, people may
talk about their feelings and what
they have gone through. They may
trade advice and try to help others
who are dealing with the same
kinds of issues. Some people like
to go and just listen. Others prefer
not to join support groups at all.
Some people aren’t comfortable
with this kind of sharing.
If you feel like you would enjoy
outside support such as this,
but can’t get to a group in your
area, try a support group on the
Internet. Some people with cancer
say that Websites with support
groups have helped them a lot.
Getting Support
Your feelings will come and go, just as they always have in
your life. It helps to have some strategies to deal with them.
First, know that you aren’t alone. Many people have been
in your situation. Some choose to confide in friends and
family members. Others do better when they join a support
group. It helps them to talk with others who are facing the
same challenges. You may prefer to join an online support
group, so you can chat with people from your home.
If support groups don’t appeal to you, there are many
experts who are trained to work in cancer care. These
include oncology social workers, health psychologists,
or counselors.
Many people also find faith as their source of support. They
may seek comfort from the different members of their faith
community. Or they may find that talking to a leader in
their religious or spiritual community can be helpful. If you
need help finding faith-based support, many hospitals have
a staff chaplain who can give support to people of all faiths
and religions. Your health care team may also be able to tell
you about faith-based organizations in the area.
Ways You Can Cope
You may be able to keep doing many of your regular
activities, even though some may be harder to do. Just
remember to save your strength for the things you really
want to do. Don’t plan too many events for one day. Also,
try to stagger things throughout the day.
On the next page you’ll find some ideas that other patients
say have helped them cope. As you can see, even little
things can help.
29
Ways You
Can Cope
Build model airplanes.
Pray or meditate.
Window shop.
People watch at the mall.
Go to a movie.
Play board games or cards.
Attend local concerts and plays.
Start a new daily routine.
Accept that it may have to be
different from your old one,
but change is okay!
Talk about feelings with
friends, family, or a leader
in your spiritual or faith
community.
Do yoga or gentle stretching.
I’m taking a watercolor class. I’m awful at it, but I sure
don’t care – anything that gets my mind off things.
I like to get my nails done.
I started to follow the stock market.
My nieces call and leave messages or songs on my
answering machine. I listen to them when I need a
fast way of cheering up.
Sometimes I drive out to the airport and watch planes.
For some reason, it’s very soothing to me.
I built a birdhouse with
my grandson. We had fun,
and I loved teaching him
about tools.
I like to bird watch. I sit
on my porch with a pair
of binoculars.
I watch a lot of movies.
I like to fix things around
the house.
I took up photography.
I didn’t buy a fancy
camera or anything. I just
started taking pictures.
Spend time outdoors in a community garden or park.
Volunteer or find a way to help others in need.
Plant flower pots.
Go to worship services.
Knit, crochet, or needlepoint.
Do crossword puzzles.
Do relaxation exercises.
Go fishing.
Do the things I enjoy, like making phone calls or reading.
Spend time with people I love.
Listen to music or a relaxation tape.
Do woodcarving.
Read mystery novels.
“Don’t feel like you’re being
morbid because you’re taking
care of business in advance. My
goal is to try not to leave things
undone because it’s not going to
be any easier on anybody else.”
—Ronald
30
CHAPTER 6
Advance Planning
This section outlines some things you can do to ensure your wishes are understood. This
can help relieve the burden on your loved ones later.
Advance Directives
It’s important to start talking about your wishes with the people who matter most to you.
There may come a time when you can’t tell your health care team what you need. Some
people prefer to let their doctor or their family members make decisions for them. But often
people with cancer feel better once they have made their desires known.
Advance directives are legal papers that tell your loved ones and doctors what to do if you
can’t tell them yourself. The papers let you decide ahead of time how you want to be treated.
They may include a living will and a durable power of attorney for health care. Think
about giving someone you trust the right to make medical decisions for you. This is one of
the most important things you can do.
A living will lets people know what kind of medical care you want if you are terminally ill
(dying). It states in writing your wishes about being kept alive by artificial means or extreme
measures (such as a breathing machine or feeding tube). Some states allow you to give other
instructions as well.
A durable power of attorney for health care names a person to make medical decisions for
you when you can’t make them yourself. (In some places, you can appoint this person to
make decisions when you no longer want to.) This person is called a health care proxy.
Choose a person you can trust to carry out your decisions and follow your preferences. Be
sure to discuss this in-depth with the person you choose. They need to know they could be
called upon. They should understand your wishes and any religious concerns you have.
Setting up an advance directive is not the same as giving up. Making decisions now keeps
you in control. You are making your wishes known for all to follow. This can help you worry
less about the future and live each day to the fullest.
It’s hard to talk about these issues. But it often comforts family members to know what
you want. And it saves them having to bring up the subject themselves. You may also gain
peace of mind. You are making hard choices for yourself instead of leaving them to your
loved ones.
Make copies of your advance directives. Give them to your family members, your health
care team, and your hospital medical records department. This will ensure that everyone
knows your decisions.
31
Following State Laws
You do not always need a
lawyer present to fill out these
documents. But you may need a
notary public. Each state has its
own laws concerning living wills
and durable powers of attorney.
These laws can vary in important
details. In some states, a living
will or durable power of attorney
signed in another state isn’t legal.
Talk with your lawyer or social
worker to get more details.
Or look at your state’s
government website. (See the
Resources section at the end of
the booklet for more on how to
get copies of advance directives.)
Other Legal Papers
Here are some other legal
papers that are not part of
the advance directives:
■ A will divides your
property among
your heirs.
■ A trust is when a person
you appoint oversees,
invests, or pays out
money to those named in the trust.
■ Legal power of attorney—you appoint a person
to make financial decisions for you when you can’t
make them yourself.
Planning for Your Family
Careful planning reduces the financial, legal, and
emotional burden your family and friends will face
after you’re gone. For many people, it’s hard bringing up
these subjects. But talking about them now can avoid
problems later.
Maybe you don’t feel comfortable bringing up the
subject with loved ones. Or maybe your family simply
doesn’t talk about these things. In either case, seek help
from a member of your health care team. They may be
able to help your family understand.
■ Clearing up insurance issues. Contact your
health insurance company if you decide to try a new
treatment or go into hospice. Most insurance plans
cover hospice. They also cover brief home visits
from a nurse or a home health aide several times
a week. But it’s wise to ask in advance. This may
prevent payment problems later.
32
33
■ Putting your affairs in order. You can help your
family by organizing records, insurance policies,
documents, and instructions. You may want to call
your bank to make sure you have taken all the right
steps in doing these things. On the next page is a
checklist to share with the person who will help you
manage your affairs. (Also see the Personal Affairs
Worksheet on page 50.)
■ Making funeral arrangements. You may want to
help your family plan a funeral or memorial service
that has your personal touch. Some people plan
services that are celebrations. Talk with your family
about how you want others to remember you.
A Checklist for
Organizing Your Affairs
✔ If you can’t physically gather
important papers, make a
list of where your family can
find them.
✔ Keep your papers in a
fireproof box or with
your lawyer.
✔ If you keep your important
papers in a safety deposit
box, make sure that a family
member or friend has access
to the box.
✔ Although original
documents are needed for
legal purposes, give family
members photocopies.
A worksheet of important
papers and documents is on
page 50. You can use it as a
guide to the types of papers
your family will need.
“I went to the Grand Canyon
with my brother. I started crying
and couldn’t stop. I realized he
started crying, too, because he
couldn’t handle the fact that he
may not have me around any
more. So there we were, just
crying in the car. He was like,
‘I don’t want to lose you. I don’t
want you to die.’” —Rhonda
34
35
C H A P T E R 7
Talking With the Special People in Your Life
Your loved ones may need time to adjust to the new stage of your illness. They need to come
to terms with their own feelings. These may include confusion, shock, helplessness, or anger.
Let them know that they can offer comfort just by being themselves and by being at ease
with you. Ask them to listen when you need it, rather than try to solve every problem.
Knowing that people cope with bad news in their own way will help you and your loved
ones deal with their emotions. Many people are reassured and comforted by sharing feelings
and taking the time to say what they need to.
Bear in mind that not everyone can handle the thought that they might lose you. Or some
people may not know what to say or do for you. As a result, relationships may change. This
isn’t because of you, but because others have trouble coping with their own painful feelings.
If you can, remind them that you are still the same person you always were. Let them
know if it’s all right to ask questions or tell you how they feel. Sometimes just reminding
them to be there for you is enough. But it’s also okay if you don’t feel comfortable talking
about it either. Sometimes certain topics are hard to talk about with others. If this is the
case, you may want to talk by yourself with a member of your medical team or a trained
counselor. You also may want to attend a support group where people meet to share
common concerns.
Some families have trouble expressing their needs to each other. Other families simply do
not get along with each other.
If you don’t feel comfortable talking with family members, ask a member of your health
care team to help. You could also ask a social worker or other professional to hold a family
meeting. This may help family members feel safer to express their feelings openly. It can also
be a time for you and your family to meet with your team to problem-solve and set goals.
It can be very hard to talk about these things. But studies show that cancer care goes more
smoothly when everyone stays open and talks about the issues.
Often, talking with the people closest to you is harder than talking with anyone else. Here’s
some advice on talking with loved ones during tough times. 
Spouses and Partners
Some relationships grow stronger during cancer treatment, but others are weakened. It’s
very common for patients and their partners to feel more stress than usual as a couple.
There is often stress about:
■ Knowing how to give and get support
■ Coping with new feelings that have come up
■ Figuring out how to communicate
■ Having money problems
■ Making decisions
■ Changing roles
■ Having changes in social life
■ Coping with changes in daily routines
Some people feel more comfortable talking about serious issues than others. Only you and
your loved one know how you communicate. Some things to think about are:
■ Talk things over. This may be hard for you or your partner. If so, ask a counselor or
social worker to talk to both of you together.
■ Be realistic about demands. Your spouse or partner may feel guilty about your illness.
They may feel guilty about any time spent away from you. They also may be under stress
due to changing family roles.
■ Spend some time apart. Your partner needs time to address his or her own needs.
If these needs are neglected, your loved one may have less energy and support to give.
Remember, you didn’t spend 24 hours a day together before you got sick.
■ Know that it’s normal for body changes and emotional concerns to affect your
sex life. Talking openly and honestly is key. But if you can’t talk about these issues,
you might want to talk with a professional. Don’t be afraid to seek help or advice if
you need it.
“My wife has been my biggest source of strength, plain and simple. That’s
how I cope with all of it, because we talk and sometimes we literally are
talking until 4 or 5 in the morning. We are just sitting here and just talking
and reminiscing, and asking questions and answering them. Being there for
one another.” —Steve
36
Small Children
“We can’t always protect the people we love. But we can prepare them.”
—Unknown
Keeping your children’s and grandchildren’s trust is
still very important at this time. Children can sense
when things are wrong. It’s best to be as open as you
can about your cancer. They may worry that they did
something to cause the cancer. They may be afraid
that no one will take care of them. They may also feel
that you are not spending as much time with them as
you used to. Although you can’t protect them from
what they may feel, you can prepare them.
Some children become very clingy. Others get into trouble in school or at home. Let the
teacher or guidance counselor know what is going on. And with your kids, it helps to keep
the lines of communication open. Try to:
■ Be honest. Tell them you are sick and that the doctors are working to help you feel
comfortable.
■ Let them know that nothing they did or said caused the cancer. And make sure they
know that they can’t catch it from others.
■ Tell them you love them.
■ Tell them it’s okay to be upset, angry, or scared. Encourage them to talk.
■ Be clear and simple, since children do not have the focus of adults. Use words they can
understand.
■ Let them know that they will be taken care of and loved.
■ Let them know that it’s okay to ask questions. Tell them you will answer them as
honestly as you can. In fact, children who aren’t told the truth about an illness can
become even more scared. They often use their imagination and fears to explain the
changes around them.
Teenagers
“My father and I are so much closer. It’s a totally different family than we
were before I was diagnosed. We’ve learned how to talk about how we feel,
how to talk to each other about what’s going on and what we’re afraid of.”
—Jake
37
Many of the things listed above also apply to teenagers.
They need to hear the truth about an illness. This helps
keep them from feeling guilt and stress. But be aware
that they may try to avoid the subject. They may become
angry, act out, or get into trouble as a way of coping.
Others simply withdraw. Try to:
■ Give teenagers the space they need. This is especially
important if you rely on them more than before to
help with family needs.
■ Give them time to deal with their feelings, alone or
with friends.
■ Let your teenager know that they should still go to school and take part in sports and
other fun activities.
If you have trouble explaining your illness, you might want to ask for help. Try asking a
close friend, relative, or health care provider for advice. You could also go to a trusted coach,
teacher, or youth minister. Your social worker or doctor can help you find a good counselor.
Adult Children
Your relationship with your adult children may change now that you have advanced cancer.
You may have to rely on them more for different needs. It may be hard for you to ask for
support. After all, you may be used to giving support rather than getting it. Or it may be
hard for other reasons; perhaps your relationship with them has been distant.
Adult children have their concerns, too. They may become fearful of their own mortality.
They may feel guilty because they feel that they can’t meet the many demands on their lives
as parents, children, and employees.
As your illness progresses, it helps to:
■ Share decision-making with your children.
■ Involve them in issues that are important to you. These may include treatment choices,
plans for the future, or types of activities you want to continue.
Reaching out to your children and openly sharing your feelings, goals, and wishes may help
them cope with your disease. It may also help lessen fears and conflict between siblings
when other important decisions need to be made.
“It’s a roller coaster ride, so we just ride the roller coaster. I’ve got the
whole family prepared, and that’s what you have to do when you have
cancer. Things are going well and then really bad.” —Delia
38
C H A P T E R 8
Looking for Meaning
Many people who have advanced cancer look more deeply for meaning in their lives. They
want to understand their purpose and their legacy. They want to examine the things they
have gone through in life. Some look for a sense of peace or a bond with others. Some seek
to forgive themselves or others for past actions. Some look for answers and strength through
religion or spirituality.
Being spiritual can mean different things to different people. It can be a very personal issue.
Everyone has their own beliefs about the meaning of life. Some people find it through
religion or faith. Some people find it by teaching, or through volunteer work. Others find it
in different ways. Having cancer may cause you to think about what you believe. You may
think about God, an afterlife, about the connections made between living things. This can
bring a sense of peace, a lot of questions, or both.
Like some people, you may also find that cancer changes your values. Having the disease
may help you learn what is most important to you. The things you own and your daily
duties may seem less important. You may decide to spend more time with loved ones or
helping others. You may want to do more things in the outdoors, or learn something new.
You may have already given a lot of thought to these issues. Still, you might find comfort by
exploring more deeply what is meaningful to you. You could do this with someone close to
you, a member of your faith community, or a mental health professional.
Or you may just want to take time for yourself. You may want to reflect on your experiences
and relationships. Writing in a journal or reading also helps some people find comfort and
meaning. Many people find that prayer, meditation, or talking with others has helped them
cope and explore their lives.
Celebrating Your Life
Having advanced cancer often gives people a chance to look back on life and all they have
done. They like to look at the different roles they have played throughout life. They think
about what something meant at the time, and what it means now. Some gather things that
have meaning to them to give to their loved ones. Others share memories or projects with
loved ones.
39
“I’ve learned a lot about myself
and the strength I have in
dealing with this. I’ve learned
a lot about my kids and family
too, watching them handle
this, and it makes me proud to
be their mother. I figure I must
have done something right.”
—Madeline
40
41
Doing these things is often called “making a legacy” for yourself. It can be whatever you
want. Don’t limit yourself! And you can do these things alone or with others close to you.
Some examples of ways people have celebrated their lives are:
■ Making a video of special memories
■ Reviewing or arranging family photo albums
■ Charting or writing down your family’s history or family tree
■ Keeping a daily journal of your feelings and experiences
■ Making a scrapbook
■ Writing notes or letters to loved ones and children
■ Reading or writing poetry
■ Creating artwork, knitting, or making jewelry
■ Giving meaningful objects or mementos to loved ones
■ Writing down or recording funny or special stories from your past
■ Planting a garden
■ Making a recording of favorite songs
■ Gathering favorite recipes into a cookbook
You can do whatever you want that brings joy and meaning to you. Some people with cancer
also make what is called an “ethical will.” It’s not a legal paper. It’s something you write
yourself to share with your loved ones. Many ethical wills contain the person’s thoughts on
his or her values, memories, and hopes. They may also talk about the lessons learned in life
or other things that are meaningful. It can say anything you want, in any way you want.
“For the meaning of life differs from man to man, from day to day and
from hour to hour. What matters, therefore, is not the meaning of life
in general but rather the specific meaning of a person’s life at a given
moment.” —Viktor Frankl 
“Our family has become very
close since I got cancer. I
remember my son said to me,
‘Dad, it’s all because of the way
you reacted to it.’ I believe him,
too. I wasn’t bitter. He wrote a
poem for me that said, ‘You’re
embracing your death instead
of running away from it.’ And
that was beautiful to me.” —Bill
42
43
C H A P T E R 1 0
Closing Thoughts
Living with advanced stage cancer may bring many challenges and hardships. But it can also
be a time of fulfillment and joy.
As you think about the issues raised in this booklet, keep in mind that survival statistics are
just numbers. The numbers that really mean the most for any of us are quite different. They
measure the good days, the comfortable nights, and the hours of happiness and joy. Keep
living your life the best that you can and in the fullest way possible.
“Think only of today, and when tomorrow comes, it will be today, and we
will think about it.” —St. Francis de Sales 
44
Resources
Cancer Information
and Support
For more resources:
See National Organizations That Offer
Cancer-Related Services at http://www.
cancer.gov. In the search box, type in the
words “national organizations.”
Or call 1-800-4-CANCER (1-800-422-6237)
Federal Resources to seek more help.
■ National Cancer Institute
Provides current information on cancer prevention, screening, diagnosis, treatment, clinical
trials, genetics, and supportive care.
Visit .......................http://www.cancer.gov
■ Cancer Information Service
Answers questions about cancer, clinical trials, and cancer-related services and helps
users find information on the NCI website. Provides NCI printed materials.
Toll-free .......................1-800-4-CANCER (1-800-422-6237)
Visit ................................http://www.cancer.gov/aboutnci/cis  
Chat online ...............Click on “LiveHelp” online chat from the home page.
■ Administration on Aging
Provides information, assistance, individual counseling, organization of support groups,
caregiver training, respite care, and supplemental services.
Phone ...................1-202-619-0724
Visit .......................http://www.aoa.gov
■ Centers for Medicare and Medicaid Services
Provides information for consumers about patient rights, prescription drugs, and health
insurance issues, including Medicare and Medicaid.
Toll-free ..............1-800-MEDICARE (1-800-633-4227)
Visit .......................http://www.medicare.gov (for Medicare information) or
http://www.cms.hhs.gov (other information)
■ Equal Employment Opportunity Commission
Provides fact sheets about job discrimination, protections under the Americans With
Disabilities Act, and employer responsibilities. Coordinates investigations of employment
discrimination.
Toll-free ..............1-800-669-4000
TTY ........................1-800-669-6820
Visit .......................http://www.eeoc.gov
45
■ U.S. Department of Labor Office of Disability Employment Policy
Provides fact sheets on a variety of disability issues, including discrimination, workplace
accommodation, and legal rights.
Toll-free ..............1-866-633-7365
TTY ........................1-877-889-5627
Visit .......................http://www.dol.gov/odep
Private/NonProfit Organizations
■ Aging With Dignity
Provides information and materials regarding advance directives. You can order the
document Five Wishes, which states your end of life decisions for your health care team,
and friends and family members.
Toll-free ..............1-888-5WISHES (1-888-594-7437)
Visit .......................http://www.agingwithdignity.org
■ American Cancer Society National Cancer Information Center
Available to answer questions 24 hours a day, 7 days a week.
Toll-free ..............1-800-ACS-2345 (1-800-227-2345)
Visit .......................http://www.cancer.org
■ CancerCare
Offers free support, information, financial assistance, and practical help to people with
cancer and their loved ones.
Toll-free ..............1-800-813-HOPE (1-800-813-4673)
Visit .......................http://www.cancercare.org
■ Cancer Support Community
The CSC is dedicated to providing support, education, and hope to people affected
by cancer.
Toll-free ..............1-888-793-9355
Visit .......................http://www.cancersupportcommunity.org
■ Hospice Foundation of America
Provides programs and materials on hospice care, caregiving, grief, and end of life. They also
provide a hospice locator service, and links to other organizations and resources.
Toll-free ..............1-800-854-3402
Visit .......................http://www.hospicefoundation.org
■ Kids Konnected
Offers education and support for children who have a parent with cancer or who have lost a
parent to cancer.
Toll-free ..............1-800-899-2866
Visit .......................http://www.kidskonnected.org
■ National Coalition for Cancer Survivorship
Provides information on cancer support, employment, financial and legal issues, advocacy,
and related issues.
Toll-free: .............1-877-NCCS YES (1-877-622-7937)
Visit .......................http://www.canceradvocacy.org
■ National Hospice and Palliative Care Organization
Provides information on hospice care, local hospice programs, state specific advance
directives, and locating a local health care provider. Through their program, Caring
Connections, they also provide education and materials on palliative and end of life issues,
as well as links to other organizations and resources.
Toll-free ..............1-800-658-8898
Visit .......................http://www.nhpco.org
■ Caring Connections
Toll-free ............... 1-800-658-8898
Visit ........................http://www.caringinfo.org
■ NeedyMeds—Indigent Patient Programs
Lists medicine assistance programs available from drug companies.
NOTE: Usually patients cannot apply directly to these programs. Ask your doctor, nurse,
or social worker to contact them.
Visit .......................http://www.needymeds.com
■ Patient Advocate Foundation
Offers education, legal counseling, and referrals concerning managed care, insurance,
financial issues, job discrimination, and debt crisis matters.
Toll-free ..............1-800-532-5274
Visit .......................http://www.patientadvocate.org
46
Words to Know
Acupuncture (AK-yoo-PUNK-cher): A form of Chinese medicine that stimulates certain
points on the body. The goal is to promote health. It is also used to lessen disease symptoms
and treatment side effects. For people with cancer, it may help treat nausea and control pain.
Before using acupuncture, ask your health care team if it is safe for your type of cancer.
Advance directives: Legal papers that allow you to decide ahead of time how you want
to be treated when you are dying. The two main types are living wills and durable power
of attorney.
Advanced cancer: Cancer that doctors no longer believe they can control with treatment;
also called “advanced stage cancer” or “late-stage cancer.”
Biofeedback: A way to monitor certain body functions to gain some control over them.
Examples of such body functions are heart rate and blood pressure.
Breakthrough pain: Pain that “breaks through” pain medication or is very painful for a
short time. Breakthrough pain can occur several times a day. This can happen even when a
patient is taking the right dose of pain control medicine.
Complementary and alternative medicine (CAM): Treatment used along with, or instead
of, standard health care. CAM includes methods such as acupuncture and massage. Some
CAM treatments may help relieve cancer symptoms or side effects. But not all CAM
treatments are safe. They should not take the place of standard health care.
Clinical trials: A type of research study that uses volunteers to test new methods of
screening, prevention, diagnosis, or treatment of a disease. Also called a clinical study.
Diagnosis (dye-ug-NOH-sis): The name and details of your disease or health condition. In
recurrent cancer, this includes your type, location, and stage of cancer.
Dietitian (dy-uh-TIH-sun): A person with special training in nutrition, who can help you
with choices in your diet. They also can suggest ways to make eating easier.
Durable power of attorney for health care: This type of advance directive appoints a
person (healthcare proxy). The healthcare proxy makes health care decisions for you when
you can’t make them yourself.
Ethical (EH-thuh-kul) will: A paper that contains thoughts or wishes that you want to share
with your loved ones. An ethical will is not a legal document.
Health psychologist: A mental health professional who works with people and families
affected by illness.
Health care proxy: The person you have named in an advance directive to make medical
decisions for you. This person can make choices for your care when you can’t make them
yourself. 47
Hospice (HA-spis) care: Care given to help patients live each day to the fullest and die
with dignity. The goal of hospice care is not to treat the disease but to make the patient
comfortable and symptom free.
Hypnosis: A state of relaxed and focused attention. The patient focuses on a certain feeling,
idea, or suggestion to aid in healing. For cancer pain relief, hypnosis works best when it is
added to your medical treatments.
Imagery: A method in which the person focuses on positive images in his or her mind. It
may help the body heal or make you feel calmer.
I.V.—intravenous (in-truh-VEE-nus): It means to get medicine or nutrients into the body
through a vein.
Legal power of attorney: You appoint a person to make financial decisions for you when
you can’t make them yourself.
Living will: A type of advance directive. A living will is a legal paper that lets people know
what kind of medical care you want if you are close to death.
Massage therapy: Rubbing different body parts to help you relax and gain a sense of
well-being.
Notary public: A person with authority from the court to witness legal papers and
signatures.
Oncologist (ahn-KAH-luh-jist): A doctor who specializes in cancer study and treatment.
Oncology social worker: A social worker who specializes in helping cancer patients and
their families.
Palliative care (PAL-ee-yuh-tiv): Care given to improve the quality of life of patients with
a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early
as possible:
•     The symptoms of the disease
•     Side effects caused by treatment
•     Psychological, social, and spiritual problems related to the disease or its treatment.
Also called comfort care, supportive care, and symptom management.
Palliative chemotherapy (PAL-ee-yuh-tiv kee-moh-THAIR-uh-pee): Not meant to be
curative, this is chemotherapy that may help to relieve the symptoms of advanced stage
cancer.
Palliative radiation (PAL-ee-yuh-tiv ray-dee-AY-shun): Not meant to be curative, this is
radiation therapy that may help to relieve the symptoms of advanced stage cancer.
48
Palliative surgery: Surgery used to relieve the symptoms of advanced stage cancer.
Recurrence (ree-KUR-ents): Cancer that has come back after a period of time during which
it could not be found. The cancer may come back to the same place as the original (primary)
tumor or to another place in the body. Also called recurrent cancer.
Relaxation techniques: Different methods, such as deep breathing and relaxing muscles,
that are used to reduce tension and anxiety, and control pain.
Remission: When the signs and symptoms of cancer decrease or go away. There may still be
some cancer in the body, but there is less than before.
S.C.—subcutaneous (sub-cu-TA-ne-us): It means to get medicine under the skin. Many can
be given this way.
Specialist: A doctor who has studied and trained in a certain area of medicine.
Standard treatment: In medicine, treatment that experts agree is appropriate, accepted,
and widely used. Health care providers are obligated to provide patients with standard
treatment. Also called standard of care or best practice.
Trust: This type of legal document gives your money and possessions to someone else.
Tumor (TOO-mur): An abnormal mass of tissue.
Will: This type of legal document divides your property among your heirs.
49
Personal Affairs Worksheet
By filling out this worksheet, you can help family members deal with your personal affairs
after you’re gone. Be sure to let your loved ones know about this list. It will help them cope
with your death and find comfort in knowing your needs and wishes were met. Try to keep
it updated and in a safe place. Make sure that only those you trust have access to it.
Banks, savings and loans
Contact Information ________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done _____________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Life insurance company
Contact Information ________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done _____________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Health insurance company
Contact Information ________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done _____________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Disability insurance company
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________ 50
Homeowners’ or renters’ insurance company
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Burial insurance company
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Unions and fraternal organizations
Contact Information ________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done _____________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Attorney
Contact Information ________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done _____________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Accountant
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
51
Executor of the estate
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Internal Revenue Service
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Social Security office
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Pension or retirement plans
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Department of Veterans Affairs
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________ 52
Investment companies
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Mortgage companies
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Credit card companies
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
All other lenders
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Employer
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________ 53
Faith or spiritual leader/organization
Contact Information _________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
What Needs to be Done ______________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Safety deposit box keys and box location
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Safe, lock combinations
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
Location of other important items (such as jewelry)
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________

 

End of National Cancer Institute (NCI) Information

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