A Guidebook By and For Young People with CFIDS (YPWCs)

Introduction

Young Persons with CFIDS Answer Your Questions:
 

1. What is CFIDS? (the YPWC version)

4. Can I tell if I might be starting to relapse?

5. Is it OK for YPWCs to exercise?

6. Is it important to take it easy even on good days? How can I learn to pace myself?

7. Who should I tell about my illness? How do I explain CFIDS to them?

8. What can I say to people who do not understand?

9. How can I keep in touch with the outside world while I am homebound?

10. What activities are fun but don't take much energy?

11. What are some of my options for getting an education?

12. How can I explain CFIDS to school officials?

13. What should I do about gym class?

14. What are some things I can do to cope with cognitive, memory and concentration problems?

15. What are some things I can do to cope with the times when I am awake and alone at night?

16. Sometimes I feel depressed. Is this normal for YPWCs? What things help overcome this?

17. Sometimes I feel angry. How can I use my anger in a "positive" way?

18. Are there support groups and organizations that can help YPWCs?

2. What can I expect the course of this illness to be? 3. Is it normal for symptoms to vary from day to day?

 

What is CFIDS? (the "official" version) Glossary of Terms and Abbreviations

Disclaimer: This document serves as an information clearinghouse for young persons with CFIDS. The ideas expressed by each quoted individual are strictly his/her own. Some of the information contained herein is intended to help YPWCs make informed decisions about their health. However, The CFIDS Association of America does not dispense medical advice or endorse any specific medical hypothesis or product and assume no responsibility for any treatment or activity undertaken by readers of this document.

Permission is granted to copy this document in its entirety for non-commercial purposes providing the intended meaning is preserved and proper credit is given to The CFIDS Association of America, Inc.  ©2001, The CFIDS Association of America, Inc.

Introduction

Dear Friend,

We have compiled this booklet of advice for you, a young person who has just entered the world of chronic fatigue and immune dysfunction syndrome (CFIDS).

This booklet is written by young people with CFIDS (YPWCs) for young people who have been recently diagnosed with CFIDS. Thinking back to the time when we first became ill, we remember feeling alone and afraid, confused and isolated and like no one understood. It was hard to understand what was happening and why, let alone trying to explain it to others.

Daily life with this disease can be overwhelming and it is especially difficult when you first become ill. Many people feel as though their lives have ended when so many things suddenly change for them. We want to share with you the things that we have learned after living with this illness ourselves. We want to share with you the knowledge that there is a life with CFIDS and that there are things that can make this life easier. We want to offer you a better understanding of what lies ahead and make the road that you find yourself on an easier one to travel.

Sincerely,

Chelsea Berns, Jen Day, Lara Hardinge and Vanessa Matthews
The CFIDS Youth Ambassadors
 

What is CFIDS???

Chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), is widely recognized in adults. But it's not as well known that children and adolescents can get CFIDS.

Because young people are different from adults in nearly every dimension - physically, emotionally, socially, etc. - recognition of the disease in young people can be difficult. For example, rather than saying their child is "fatigued," parents might say that the child is always sleepy, grumpy or can't keep up with other children in school or at play.

The symptoms of children and adolescents with CFIDS are similar to those of adults: debilitating fatigue, substantial impairment of short-term memory and/or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, unrefreshing sleep and post-exertional fatigue.

CFIDS affects every aspect of a person's life. Many young people with CFIDS must be home-schooled, because they are too ill to attend class every day. This can result in deficits not only in education, but also in social development at a very critical age. It's important to remember that nearly everything a young person does will influence his or her life as an adult.

The first step in treating children with CFIDS is making the diagnosis. There is a great body of knowledge available about how children cope with chronic illness. Identifying a reason for their poor health will help them cope with it in an emotionally healthier way.

Your assistance is critical to solving the mystery of CFIDS. Medical research provides the best hope for the futures of CFIDS patients of all ages. The CFIDS Association of America is committed to accelerating and improving CFIDS research. Like all charities, the Association depends upon public contributions to keep its critical work going. Please do what you can to ensure that scientific advances are quick and effective, so the next generation of young people will not be burdened by this chronic, disabling disease.

For more information, contact The CFIDS Association of America at 800/442-3437, e-mail at info@cfids.org or on the Internet at http://www.cfids.org.

Glossary of Terms and Abbreviations

CFIDS: chronic fatigue and immune dysfunction syndrome

CFS: chronic fatigue syndrome (another name for CFIDS)

ME: myalgic encephalomyelitis (name for CFIDS in countries other than the U.S.)

PWC: person with CFIDS

YPWC: young person with CFIDS

Young Persons with CFIDS Answer Your Questions

"Even though the  symptoms may be invisible, CFS is a real illness, and it's really important to be believed and trusted."     ~Josie O'Connor  Birthdate: December 9, 1980  CFIDS Onset: July 1992              "This is a very destructive,  misunderstood disease.  There is much more to it than being tired."    ~Allison Baldwin  Birthdate: May 26, 1979  CFIDS Onset: 1995              "One university class left me so sick and run down that I haven't recovered three months later. I miss school -  the days when I could take two classes a semester will come again!"   ~Jamie Nelson  Birthdate: September 1, 1975  CFIDS Onset: January 1989        "In my first six months with CFIDS, I missed 111 days of school and had to be home schooled."   ~Adrienne Couvillion  Birthyear: 1980  CFIDS Onset: December 1996          "I do not waste time being angry at this illness for 'choosing' me. I am angry at those who waste precious research time and money insisting that I chose it."   ~Alexis Newbrand  Birthdate: February 14, 1977  CFIDS Onset: September 1993           "I still have all the same dreams and goals, but I need support to achieve them."  ~Cynthia Sillitoe  Birthdate: January 5, 1977  CFIDS Onset: November 1992          "The hardest thing about growing up with CFIDS is to not become as invisible as the illness itself."   ~Catherine Matheny  Birthdate: March 12, 1974  CFIDS Onset: August 1983          "I am in 10th grade, but have never been in my high school. Tutors come to my home. I would like to go to school and make some friends."   ~Sarah Loreman  Birthdate: June 12, 1982  CFIDS Onset: April 1991          "CFIDS is not an excuse we use to stay home. We want to be in school, with our friends and planning our lives. CFIDS makes this impossible."  ~Jake Parsons  Birthdate: January 13, 1976  CFIDS Onset: January 1996          "CFIDS robs young people of energy, but more importantly it robs them of a fair chance to spread their wings and chase their dreams."    ~Sandy Becker  Birthdate: October 16, 1973  CFIDS Onset: April 1991            "Having CFIDS has stripped me of the ability to do many of the things I love most."   ~Amber Arbogast  Birthdate: April 8, 1980  CFIDS Onset: February 1997          "Having CFIDS has challenged me to hold on to my dreams and goals... to keep hope alive."  ~Rebecca Moore  Birthdate: December 20, 1976  CFIDS Onset: December 1991              "Living with CFIDS would be tough on anyone, but dealing with its effects on a young person's life is even harder."  ~Connie Howard  Birthdate: April 19, 1980  CFIDS Onset: November 1993      "Life with CFIDS is not an extended vacation. It's a constant battle, but one that I'm determined to win."  ~Jenn Waterman  Birthdate: September 23, 1979 CFIDS Onset: 1991

1. What is CFIDS?  Chronic fatigue and immune dysfunction syndrome (CFIDS) is a debilitating, complex disease that afflicts men, women and children of all ages, races and income levels. It is also known as chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME).  CFIDS can make you feel very sick, as though you are having an awful case of the flu that doesn't go away. Your doctor can help with treatment ideas that may help ease some symptoms.  "CFIDS is an illness with serious symptoms... exhaustion, weakness and pain all over the body, inability to think clearly, sleep disorders and many other symptoms that vary from person to person." --Joel Durrwatcher   "CFIDS... has a lot of ups and downs... that can teach you a lot about yourself and others." --Jean Oviatt    Back to the list of questions   2. What can I expect the course of this illness to be?  Everyone is different! CFIDS can last from several months to years. Some people improve gradually, while others go through periods of relapses and remissions. Some people are bedridden, some people can go out of the house occasionally and some people can work or go to school.  "The course of CFIDS is never the same for two different people... you may be at a different level next month or next year." --Sandra Becker   "It varies for everyone, but expect the unexpected and don't put your life on hold while waiting to get better -- enjoy whatever you can in life!" --Lauren Jonik    Back to the list of questions   3. Is it normal for symptoms to vary from day to day?   Having symptoms vary from day to day is normal when you have CFIDS. Often symptoms can be affected by your medications, diet, stressors and whether you are taking enough time to rest or have done too much. Frequently, symptoms change for no apparent reason. Sometimes you may be able to detect a pattern in your symptoms, but other times you may not know why you have a particular symptom.  "It is normal to have your symptoms vary. It happens to all of us." --Suzanne Spradlin   "Yes, it is normal... some days are just worse." --Rebecca Duger    Back to the list of questions    4. Can I tell if I might be starting to relapse?  After a period of time, you may begin to know your body and the signals it will give you. A general worsening of symptoms is usually the first sign that you are going to have a relapse. If you start to feel worse, REST! Most importantly, try to avoid doing more than your body can handle.  "It is helpful to keep a journal... this allows you to look at relapse triggers. " --Chelsea Berns  "In time, budgeting your energy to help prevent relapses will become easier." --Ann McErleane    Back to the list of questions   5.  Is it OK for YPWCs to exercise?   Some YPWCs can tolerate very mild exercise while others cannot. It is important to go at a slow, relaxed pace and to listen to your body. In general, if you find an activity draining and it takes several days to recover from it, STOP! Take the time you need to recover from it, and then re-evaluate how much you can handle doing. Perhaps a shorter session, slower pace or a more gentle form of exercise will be more appropriate for you. Be sure to check with your doctor before beginning any exercise in any form!  "I used to overdo it, which made me sick for days... now I do an easy form of yoga." --Aimee Sintes  "Keep in mind how you feel when you're done. Don't overdo." --Angie Fowler  "Many times a YPWC starts to feel somewhat better so they try to push themselves. This often results in a relapse... you must pace yourself and not overdo it!" --Jen Day    Back to the list of questions   6.  Is it important to take it easy even on good days? How can I learn to pace myself?   It is always important to remember that you may not feel the effects of today's activity until several days later. It is very important to pace yourself and you can learn to do this by listening to your body. It takes time to discover how much is too much. Always be reasonable about what you can do!  "Pacing yourself is hard... allow yourself time to rest after activity... listen to your body." --Kendra Speigel  "When the first signs of improvement develop we think we can take on the world... but we must go slow." --Jaime Wellman  "It's so hard with school... it is the biggest thing that distracts my attention from my health, even though I'm on homebound." -- Anonymous    Back to the list of questions   7.  Who should I tell about my illness? How do I explain CFIDS to them?   YPWCs need to decide for themselves who needs to know about CFIDS. It is best to tell people who NEED to know, such as school officials. You may want to formulate a short description to give to casual friends and extended family. You may want to give a more detailed description and maybe some articles and medical material about CFIDS to close friends and family. Don't be discouraged if they don't understand, as this is a very hard illness to relate to.  "For Those Who Care" is information from The CFIDS Association to help families and friends of persons with CFIDS understand the illness and how to help. For a free copy by mail, click here. "Tell whoever you feel comfortable telling... always be honest." --Vanessa Matthews  "Find some information that you think best describes CFIDS and keep it handy to give people." --Lara Hardinge    Back to the list of questions   8.  What can I say to people who do not understand?  Try to find out what they are confused about and give them information about it. Sometimes there's not much that can be said to make people understand. Sometimes just explaining that CFIDS is hard to explain and understand can help. It is hard, but be patient!  "Remember, most people have never heard about CFIDS. This is all new to them, as it is for you." --Tammy Pullins  "You need to keep in mind that before you got sick you probably didn't understand CFIDS either... in time people will learn to understand." --Jen Day    Back to the list of questions   9.  How can I keep in touch with the outside world while I am homebound?  There are many ways to keep in touch with the outside world! Watching the local news and reading the newspaper can help. If you have access to a computer, you can connect to an on-line service where there are several support groups for YPWCs . Make it a point to keep in contact with friends and relatives that live in your town by making phone calls or inviting them over for a quiet activity.  "Try going with a friend to sit at the park or go to a movie or some other special place." --Amy Pride  "Write letters! Getting mail is fun... my pen pals are some of my closest friends." --Lauren Jonik    Back to the list of questions   10.  What activities are fun but don't take much energy?  The activities you can do now are many and varied! Depending upon how you are feeling on a given day, you could see a movie or a play, listen to music or do a craft project such as needle point, painting, coloring or taking photographs. Perhaps you might organize a photo album or scrapbook, talk on the phone, write letters, write poetry, read short stories, work on a puzzle or play a board game. Other restful options include sitting outside and watching nature or the neighborhood activity, enjoying pets or watching the stars come out. Many of the things you enjoyed before CAN be adapted to where you are now!  "Collect something... find quiet toys that you can play with laying down... start a windowsill garden... take up birdwatching." --Jenn Waterman   "I watch movies... or read magazines... they're short and can be put down whenever I feel too sick to continue... " --Kendra Spiegel     Back to the list of questions   11.  What are some of my options for getting an education?  The first step is to determine how much school you are able to attend. Then work with your school officials to decide on the best approach for YOU. You have a right to an education and it is protected by two federal laws: the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973.*  These laws require schools to adapt their educational programs to meet the needs of disabled students, whether that means adjusting things in the classroom, adapting for part-time attendance, providing a homebound tutor or working with independent study programs.  "If you are able to go to school part or full time, do it. If going TO school is not possible, the school may be able to provide a home tutor... or you might home-school or try an independent study program." --Sandy Becker   "I tried a variety of options before finding the one best suited to me... I like using a correspondence course in conjunction with my public school so that I can work at my own pace and still have opportunities with my school." --Chelsea Berns   * NICHCY, the National Information Center for Children and Youth with Disabilities, is a great source of information about educational laws and rights. The phone number is 800/695-0285 and the web address is Back to the list of questions   12.  How can I explain CFIDS to school officials?  It is helpful to have a meeting with the school, involving your health care providers when possible, to explain your new educational needs. See the Education section of this Web site or call The CFIDS Association of America at 704-365-2343 for more information. Back to the list of questions 13. What should I do about gym class?  Many YPWCs are not able to participate in gym class, but you must decide what your activity level is. Perhaps you are able to take a slow walk during class or act as a teacher's assistant. Talk with your physician about what is most appropriate for you. There are many alternatives available to you, so don't push yourself beyond your physical limits. Learn to make choices about where you spend your limited energy.  "This year I am taking Adaptive P.E., a written course... " -- Anonymous "Don't take gym if you feel physically worn out at all... it's not worth getting sicker just to participate." --Lauren Jonik     Back to the list of questions   14. What are some things I can do to cope with cognitive, memory and concentration problems?   Writing important things down, minimizing distractions and repeating things back to people can be helpful. When trying to do schoolwork, if you find it impossible to concentrate, try postponing it for a while. Letting close family and friends know that you have cognitive problems can help. Ask them to leave notes for you and be patient if you forget things. Understand your limitations! Work with what you DO have and work gradually towards increasing your abilities.  "I carry a little pocket book and pen with me everywhere I go to write things down... it helps a lot!" --Aimee Sintes   "Remember that cognitive problems are a normal part of CFIDS that will vary from day to day... I work with a learning disability specialist to improve my memory and concentration skills... and I realize that I am not stupid just because I cannot remember my address sometimes." --Kendra Spiegel   "Keep items in a specific order... put related items together so that you can find them easily." --Joel Durrwatcher     Back to the list of questions   15. What are some things I can do to cope with the times when I am awake and alone at night?   Make sure that you have everything in place to make sleep come more easily. Consider things like taking a warm bath, reading or listening to soothing music or relaxation tapes before going to bed. Hang up photos and cards from friends and family so that they are right there with you. Talk with your doctor about possible treatments for insomnia. Try to view sleepless nights as a time for doing peaceful, relaxing activities.  "Use this time to study... sometimes I watch TV, then I don't feel alone... I remind myself that millions of people have insomnia." --Tammy Pullins   "Wish upon a star... make up a story... draw a picture... read old letters... design your dream bedroom... " --Jenn Waterman     Back to the list of questions   16. Sometimes I feel depressed. Is this normal for YPWCs? What things help overcome this?  It can be normal for a YPWC to get depressed because CFIDS changes your life so much. Depression can also be a physical symptom of CFIDS and it helps to remember, like other symptoms, it can vary from day to day. One of the best things you can do to help overcome depression is talking to someone who understands you, whether this is through a support group, Internet discussion group, pen-pals, friends, family, a counselor or your doctor. Visit Other Resources for information about finding sources of support. "I think it would be rare NOT to get depressed a little bit... keep in mind, there are a lot of others going through the same thing... you are part of the same community." --Jaime Wellman   "Depression is a completely normal part of coping... I have found that support through my pen-pals is helpful in defeating depression" --Ann McErleane     Back to the list of questions   17. Sometime I feel angry. How can I use my anger in a "positive" way?   Anger is also a normal part of CFIDS. Many people find it helpful to write to pen-pals and express how they are feeling, while others write CFIDS advocacy letters and express their anger in a way that educates people. Everyone expresses their anger in different ways, so find the positive way that works best for you! For ideas, send an e-mail to volunteer-info@cfids.org , or send a legal-sized SASE first class postage to The CFIDS Association of America, PO Box 220398, Charlotte NC 28222-0398, ATTN: Volunteer info. "Channel anger into positive actions... educate people, write advocacy letters... we may be sick, but we're not unable to make a difference in the world even when we're homebound." --Lauren Jonik   "Anger is a normal part of CFIDS... remember you aren't mad at family or friends, you're mad at CFIDS... get out your favorite video game and pretend you are stomping out CFIDS!" --Sandy Becker     Back to the list of questions   18.  Are there support groups and organizations that can help YPWCs?  Yes! The CFIDS Association of America is the leading organization working to conquer CFIDS and provides numerous resources on this serious illness. You can find links to other resources, such as support groups and educational information, on this Web site. Back to the list of questions   ON-LINE SERVICES & GROUPS

Many thanks to all of the people who participated in this project. Special thanks to Chelsea Berns, Jen Day, Lara Hardinge, Rebecca Moore, Vicki Carpman Walker, Jenn Waterman, The CFIDS Association of America and all of the YPWCs that contributed their experiences.