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:
"Have you heard about MS and what it does to a person? Most folks say yes...
"Do you know what polio is? Atypical Polio? Most older folks say yes...
"Do you know what Alzheimers is? Most folks say yes...
"I say then 'Good... now cross the three and add to it a malfunctioning immune system and you might have some idea of how I feel on my average day.'" - Phyllis Griffiths

What is CFIDS? Much More than Fatigue

1) Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least six months that is: Of new or definite onset; not the result of ongoing exertion; not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more consecutive months of illness, none of which may predate the fatigue: Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours. Centers for Disease Control, 1994

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.

Disbelief and Invalidation

"You look fine to me."
People sometimes think PWCs are lazy or depressed, and if they pushed themselves a bit they could do anything the rest of us do. After all, they don't look sick. Fact is, CFS is a medical illness, not a psychiatric one, and all the wishing - or pushing - in the world doesn't help. It is not "all in their heads," as is so often implied.

"Hey, you look good. You must be better."
People think because PWCs are out and about, they must be better. Listen to what one PWC would really have liked to say to an acquaintance who said that to her at a baseball game.

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)?"
People - even fellow PWCs - sometimes suggest any and every alternative medical treatment in existence and manage to imply, often without intending to, that because PWCs aren't taking the drug or mineral or vitamin supplement de jour, that it's their own fault they're sick.

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.

Unpredictability

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

I've put a lot of effort into becoming me, and now I'm not. It's rather disconcerting. - Michael Kimmitt

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?"
PWCs often can't predict even hours or minutes ahead of time how they'll feel, or if they'll be up for a given event. Sometimes CFS means that things take longer than usual. It's easy to take it personally when PWCs can't be definite about plans or have to say no outright because they know they can't manage the energy expenditure, but remember, can't means "can't," not necessarily "doesn't want to."

"I know you'll be well enough to see me."
Maybe, maybe not. Learn to swallow your pride and take "no" for an answer graciously. Don't assume you'll automatically be an exception.

"How are you feeling?"
PWCs say that people don't know how to respond when you tell them you feel awful. Maybe that's why people sometimes say, "Oh, bummer," and change the subject. PWCs' other alternative is to lie, and say they're fine. One PWC, who has tried and discarded that tactic, says it's simply too isolating. If your PWC friend brings it up or seems to want to talk about it, don't change the subject. Ask about them. Sometimes they won't want to discuss how they feel, though. Follow their lead.

"Well, gee, you don't have to get angry!"
CFS leads to unpredictable emotional ups and downs, too. PWCs sometimes get angry for what seems like no reason. Most PWCs realize how difficult they can be to live with. Avoid trivializing their concerns as "just part of the illness." It's hard to be nice when you're in pain and feeling awful.

"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.

Isolation and Dependency

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?"
At the same time, too much attention is difficult, too. Neurological changes make mere paying attention exhausting for them. Sometimes PWCs are not even up to long distance phone calls with distant friends and relatives. At times like that, chat via email, and they'll let you know when they are ready to talk.

"Can I catch CFS from you?"
The contagion issue is a difficult one, too, inasmuch as the cause of CFS is not known. A PWC told about how a potential girlfriend dumped him when he told her he had CFS. "That certainly sounds contagious," she said, quickly disappearing. Another PWC's (ex?)friends think she's mentally ill. The consensus is that she's "lost it."

"Can I pick up something for you at the store?"
Dependency is difficult for someone who has been independent. Let PWCs to do what they can, but don't hesitate to offer to help without being asked first - and then follow through. Sometimes it's hard to ask for - or accept - help.

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.