Index
Meeting the Challenge of CFS
What other CFS Sufferers have to say
Understanding and Love Needed
The Top Things I want to hear
Coping with CFS and how to deal with it
How does one live with CFS?

Many people with CFS must meet the challenge of this disease on a daily basis. Though we do not look ill (on some days) that does not mean that we are not ill. I have had many experiences with people (even my own family) that can make one feel that there is something wrong with me because I am ill. I am expected to act like a normal because I look like one.

The amazing thing though is when I read the stories of others.  Although we are all individuals, we do share a common bond and that is CFS.  As I was reading the stories of many other CFS sufferers, I came to realize we not only were struggling with CFS but we were all trying to get others to recognize and become aware of this illness so they would understand us better. Why do we struggle so hard to try and get others to understand CFS? Because without their understanding of this illness, they will continue to judge us based on what little they know or don't know. I don't want to have CFS but fighting it won't help.....it will only cause another relapse.

It's hard to express all the feelings and emotions we go through let alone some of the symptoms, but whenever I find someone who says exactly what I'd like to say and they say it better - I just quote them. Why try to say it differently when they express it so well.

DOCTORS at a symposium were discussing the treatment of CFS (chronic fatigue syndrome) during a telecast when one of them said: "These patients all look as healthy as everybody on this panel." Because such patients don't look sick, they are often treated in a way that increases their misery.

Patricia, a CFS sufferer in Texas, noted: "Sometimes I have felt like Job, whose companions weren't always helpful." A visitor, for example, once told her: "You look fine to me! I thought you were really sick. You and my mother-in-law have a lot in common. She is a hypochondriac too."

Such comments can be devastating, and they constitute a major challenge of CFS. "The emotional pain of being put down for not 'trying' is beyond description," explained Betty, a CFS patient in Utah, "and is the worst part of the suffering CFS brings."

Betty expressed the sentiments of perhaps every CFS sufferer when she said: "We don't want pity. We don't need sympathy. But, my, how we could use some understanding! God knows our difficulties and sorrow, and that is most important. But it is also vital that we get emotional support from our Christian brothers and sisters."

For many people, however, CFS remains difficult to understand, as a young sufferer from Washington State noted recently. "The one thing I wish people had more of is empathy," she said, not sympathy, but empathy. And that is impossible because not many people have ever dealt with an illness like this."

Yet, it shouldn't be impossible to understand CFS sufferers. Granted, their physical condition may be beyond our experience. But we can learn about their illness until we grasp just how sick they truly are. Unlike AIDS, which kills, one patient explained, CFS "just makes you wish you were dead." Deborah, who became ill in 1986, confessed: "For a long time, I prayed every night to God to allow me to die."

Of course, we want to be encouraging, to help sufferers meet the challenge of CFS, but unfortunately our comments may do the opposite. For example, a well-meaning visitor suggested to a CFS sufferer: "What you need is to drink some warm milk at night. It will help you sleep, and you ll be all right in a few days." That comment revealed a total misunderstanding of CFS. It hurt the sufferer more than it helped.

Sick ones may often feel unable to do such things as attend funcions or meetings. When they do come, the effort involved may be far beyond what we comprehend. So rather than draw attention to their previous absences, we could simply say: "It's so nice to see you. I know it's not always easy for you to be here, but we re glad to see you tonight."

The nervous system of CFS sufferers is often affected, making even normal interaction with people difficult. "We need to be a buffer between them and others," explained Jennifer, whose husband has CFS. "We must help them by allowing them privacy, by never getting upset with them, and by helping them avoid any kind of confrontation."

Jennifer admitted that the illness of sufferers can be taxing on family members, who may become tired of doing everything for them. But as she noted, if patients are not allowed to rest, their recovery will likely be delayed, and so everyone will lose in the long run. Happily, the illness apparently is rarely if ever contagious, although there does seem to be a hereditary predisposition to the affliction.

Tottie, a CFS sufferer and wife of a traveling overseer of Jehovah's Witnesses, said that for years her husband has helped her meet the challenge of the illness. She lets him know of her appreciation but noted: "Friends often inquire about me and my welfare, but Ken needs encouragement too."

1. What is it like for you to have CFS/M.E.?
2. It must be very hard to live with this disease.
3. I won't give up on you, even if you don't write or call very often.
4. I'll be there for you.
5. Can I help in any way?
6. Call me if you need to talk and want someone to listen
7. I'll bet a lot of people don't understand how your life has changed.
8. It must be hard to need help from other people.
9. You must be scared or angry sometimes.
10. Would you like to veg out at my house for a few days?
11. If you go out, is there a way I can help you stay within your limits?
12. I still see you as a full person, not just an illness.
13. You sure have a lot of courage!

(Judy Kruger, Connecticut CFIDS Association and copied from the MEssenger dated May 1996).

Taken from ME/CFS - Symptoms

Persons with ME/CFS must identify their limits and learn to operate within them. Symptoms tend to be aggravated by physical or emotional stress and improved by rest. Those who accept the fact that they have a chronic illness and regulate their lives accordingly generally cope better than those who deny the reality of their illness. Many persons with ME/CFS overcome the sense of isolation and helplessness common to the disease by joining support groups and working to help each other. In telephone calls, newsletters, journals and at meetings and conferences they share experiences, exchange information and learn from each other.

Persons with ME/CFS often find an equilibrium point at which they can function. As in combating any chronic illness a positive hopeful atittude is essential. What is CFS from CFS FAQ - 1.01

Chronic fatigue syndrome - CFS -is an emerging illness characterized by debilitating fatigue experienced as exhaustion and extremely poor stamina, neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome - CFIDS, and outside of the USA is usually known as myalgic encephalomyelitis - ME. In the past the syndrome has been known as chronic Epstein-Barr virus - CEB.

The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.

The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose. The CFS FAQ is copyright 1997 by Roger Burns on behalf of the CFS Internet Group. Permission is granted to redistribute or quote this document for non-commercial purposes provided that you include an attribution to the CFS Internet group, the contact address of CFS-L-REQUEST@LIST.NIH.GOV, the FAQ's version number and date, and at least two locations from which a current version of this FAQ may be retrieved - see Appendix 1. For any other use, permission must be obtained in writing from Roger Burns - CFS-L-REQUEST@LIST.NIH.GO.

How does one live with CFS?

Know that it's not you. It takes a lot to adjust to your new, lessened capabilities, and the adjustment is made more difficult by the expectations of you and those around you who have been long accustomed to dealing with your "normal, healthy self".

Patients often find an equilibrium point at which they can function. As in combating any chronic illness, a positive hopeful attitude is essential.

Be prepared for a possible lack of acceptance from some from whom you might expect support. This may be a shock, but when you cannot regularly "go bowling" with the gang, or you increasingly depend on being accommodated at home or on the job, and when you have a condition that your doctor may not certify or that other people have already heard of as "that yuppie disease", then your emotional world will become quite different.

Find new sources of support. It will be important to create a new family-and-friends support structure. This can be done through CFS support groups, electronic networking, pen pals, and other means.

You will need to take the time to create a new self image for yourself, to know that your new physical limitations do not limit you as a person, as a soul, no matter what other people are thinking.

There are many other coping techniques that will enable a person with CFS to maintain some kind of life. These other techniques can be found in

And take some advice from those who have traveled this difficult road before you -- consider reading from books like those below:

"The Alchemy of Illness" by Kat Duff, 1993, Pantheon Book, New York. $19

"Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment" by William Collinge, 1993, The Body Press/Perigee, New York. $13.95

"Living With Chronic Fatigue Syndrome" by Timothy Kenny, 1994, Thunder's Mouth Press, New York. $12.95

This is a small list of coping but there are many other ways of coping and they can be found at Coping Strategies for CFS and The Fifty Percent Solution.

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