CFIDS: a primer - what your friend or family member with CFS needs you to know
It's almost a guarantee that if you don't have a friend or relative with CFS, you don't understand it - not really. And if you do know someone with CFS, there are certain things they desperately need you to know.
The fact is that CFS is a mysterious, scary, and miserable illness with no known cause and no cure. It strikes people of all ages and can turn them into invalids.
It's frightening. It's hard to see your loved one in pain and feeling rotten. PWCs (people with CFS) can be a lot of trouble. But a CFS sufferer's life may depend on your really understanding their illness. You see, suicide is one of the leading causes of death of people with CFS. Partly because of the nightmare quality of the illness itself, and partly because of the misinformation and misunderstanding that are so rampant.
"I got to the point a few years ago when I got tired of trying to explain to folks about the CFS. So I started asking them a couple of simple questions instead:
Besides what's on the official list, many PWCs experience dizziness, ringing ears, eye pain, chemical sensitivities, light and sound sensitivity, gastrointestinal problems, frequent opportunistic infections, seizure disorder, fever, and much more. Often they describe it as feeling like they "have the flu, only it never goes away."
There are three core issues PWCs have to contend with. The first is the fact that their illness is often not taken seriously, even by physicians and other medical professionals. The second is the unpredictability of it, and the third is the isolation and dependency which their condition causes.
"You look fine to me."
"Hey, you look good. You must be better."
I look OK because I don't do anything. I don't do anything because I'm not better. On the days when I really feel bad I don't go out and you don't see me. If I tried to do anything I would be worse, but then you wouldn't see me because I would be stuck in bed. Thanks for asking, though.
"I get tired, too." or "I've had that, too."
It's mainly people saying, "I've had that, too," which is devastating...as if I hadn't lived for 53 years before getting this, as if I didn't know the difference between what I have now and what I was like before.
The unspoken message here is: So why is it such a big deal with you? You're making a mountain out of a molehill. It couldn't possibly be as bad as you're suggesting. You get tired. So rest more.
PWCs tend to get angry because the term "chronic fatigue," which has many causes and many cures, is often used synonymously with "Chronic Fatigue Syndrome," a very different thing from mere "fatigue." Many feel the very name of their illness is at the root of much of the public's misunderstanding.
"Have you tried....(fill in treatment of choice)?"
One PWC has essentially lost a friend of twenty-five years because of this issue. The friend just doesn't get it. The last thing a PWC needs is to feel blamed for being ill.
I am - was? - an associate professor of history at Villanova University. Johns Hopkins Ph.D. 1984. My dissertation won a prize, and was published by Columbia University Press. A husband, two kids, two dogs - I was already very productive publishing, but I knew that my peak years would be in my late forties and fifties, when my children were on their own. I didn't expect this. - Mary Schweitzer
CFS is a very unpredictable illness. Symptoms change over time and one week's major problems may be non-issues by the next month. PWCs often have their hands full just dealing with how they feel and how to cope, leaving them with little reserve to deal with relationship problems.
[It's] the constant shifting of symptoms, the inability to adjust to an illness that changes so often - presenting the PWC with yet another problem. - Eva Shaderowfsky
"Can you be there next Thursday at 8?"
"I know you'll be well enough to see me."
"How are you feeling?"
"Well, gee, you don't have to get angry!"
"Don't you remember?"
Your mind will be in a constant 'fogged' state, ... and your eyes will have a noticeable 'glazed over/drugged out' look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. - Kathleen Houghton
Cognitive problems, what PWCs call brain fog, come and go. Short term memory is sometimes almost nonexistent. Be patient and gentle if they can't remember something that seems patently obvious to you. CFS can lower one's IQ by as much as 40 points. One woman describes how she used to be able to finish the New York Times daily crossword puzzle in ten minutes. Now she sometimes ends up with huge blank spaces, which she can't fill no matter now often she comes back to it.
Tongue only partly in cheek, one PWC says this is how she'd like to respond sometimes:
Warning. Do not taunt the animal. The right side of my head is about to explode. Someone is trying to unscrew both of my eyeballs. I wish I could find out who whopped me in the back of the head with that baseball bat. Everything else just ACHES. If you ask me something I am probably just going to stare at you because I don't remember how to answer a question. Be gentle. Thank you.
My brain is constantly in a fog and I can't seem to concentrate on typing or reading. I have to do everything twice. I can't sleep. And when I do sleep, I wake up still tired. I am contemplating taking a medical leave of absence from work. I'm slowly fading away. Fading out of the business and social world. Fading out of usefulness. Wondering everyday what I'm going to feel like tomorrow. And constantly wondering where I'll be a year from now. - Anonymous
Perhaps it's because PWCs have to say no to invitations so often, or maybe because friends fear contagion or think PWCs are mentally ill. Maybe the old friends just can't accept the "new" person the PWC has become. For whatever reason, they're no longer "acceptable," and PWCs lose friends in droves. Isolation is a big issue for PWCs, many of whom are housebound.
Call up friends or family with CFS, or visit, or drop them a card in the mail - whatever they're feeling up to - so they know you haven't forgotten them.
"Is this a good time to visit?"
"Can I catch CFS from you?"
"Can I pick up something for you at the store?"
At that time, I didn't even have the strength to cut vegetables, much less go shopping. And our two-hour hikes, well, we hadn't been on a walk of any kind for six weeks. He was doing all the cleaning, everything he usually did plus my share. He fed me, did the laundry, sat with me for hours holding my hand or stroking my hair as I lay on the couch, too exhausted to move. (I'm going to die. I know everyone does. But I'm going to die of this. I know it.) - Eva Shaderowfsky
CFS is a difficult illness. Difficult for the sufferer, of course, but also difficult for those of us who care. Don't be afraid to talk about how the illness impacts your relationship. Ask them what you can do differently, and then do it. Support from family and friends can literally be lifesaving for PWCs who occasionally feel that suicide is the only way out of the nightmare world in which they live. Just "being there" when they need a friend sometimes makes all the difference in the world.