What your family and friends need to know.

What Your Family or Friends Need to Know
About You and CFS

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/daymare 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 and 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 Alzheimer’s is?" Most folks say "Yes."

I say, "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 CFS?

Much More than Fatigue,

2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more 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 post exertional malaise lasting more that 24 hours. CDC.

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 infection, 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 PWC’s are lazy or depressed, and if they pushed themselves a bit they could do any thing 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 "

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.

Unpredictability

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 and 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.

"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?"

PWC’s say that people don’t know how to respond when you tell them you feel awful. Maybe that’s why people sometimes say," Too bad", 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.

"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 PWC’s call brain fog, come and go. Short term memory is sometimes non existent. 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 how often she comes back to it.

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.

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 old friends just can’t accept the new person the PWC has become. For whatever the 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, 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.

Dependency is difficult for someone who has been independent. Let PWCs 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.

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 PWC’s 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.

Courtesy of Sue Boettcher CFS Site. (see quick links)

I hope this guide will provide useful information for both you, your family and friends.

What Your Family or Friends Need to Know
About You and FMS

We cannot discuss CFS without mentioning Firomyalgia, as quite often the two illnesses overlap.

Fibromyalgyia Syndrome. FMS is a chronic, invisable, illness that is difficult to understand.

It is a dysfunction of the informational substances such as neurotransmitters, hormones and other biochemical messengers which run the systems of the body and mind.

It causes hypersensitivity to all sorts of stimuli, so it can amplify pain. One symptom is dysfunctional sleep. Because of the abnormal sleep patterns it creates the body cannot do much of it’s repair.You are denied deep sleep. The body does much of it’s repair and biochemical regulation during this deep sleep.

Sleep is unrefreshing. The person with FMS can’t recover from exercise, stress and work like other people. They are constantly in a state of sleep deprivation .

Symptoms can be severe, yet blood tests, X-rays and other common diagnostic tests do not show FMS. This only means that we presently lack knowledge of how to test for FMS. FMS is one of the most common sources of chronic pain, and the most undiagnosed of illnesses.

Most FMS patients have memory and cognitive impairments. Doctors often refer FMS patients to psychologists or psychiatrists, yet studies show that psychologically, these patients have no more abnormal psychology than arthritis patients. People with FMS are often misunderstood and doubted, and this, in addition to the chronic pain and other symptoms, could cause anyone to feel depressed and confused. An American College of Rheumatology study found that the impact of FMS on your life is as bad, or worse, than Rheumatoid Arthritis. FMS patients don’t look sick, and their symptoms vary, so they are often misunderstood and disbelieved by clinicians, family and friends.

FMS is not progressive, but symptoms may worsen if the perpetuating factors are not identified and dealt with promptly and adequately. If you have FMS, you have a history of widespread pain and wake up every morning feeling like you’ve been run over by a truck. You may have headaches and loss of balance. Looking both ways when going into traffic can cause dizziness. You can’t always find your car in a parking lot. On your bests days you feel like you have the flu. You may have short-term memory loss. You may put on weight and can’t get it off. Sometimes you have muscle twitches.

With FMS, you will probably have 11 of 18 specific tender points. If these spots are pressed, you will have pain.

There is no cure for FMS. There are medications and therapies that help some symptoms of FMS. The key to reducing symptom load is always to identify every perpetuating factor, such as lack of restorative sleep, poor diet and posture, as well as the pain load, and deal with each of them as thoroughly as possible.

There are real limitations for people with FMS. Be patient, compassionate, and listen. Ask if there is something you can do to help.

Exerpted in part from : A Survival Manual by Devin J Starlanyl and Marh Ellen Copeland.

I hope this guide will provide useful information for both you, your family, and friends.