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



Itís almost a guarantee that if you donít have a friend or relative with CFS, you donít 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.

Itís frightening. Itís hard to see your loved one in pain and feeling rotten. PWCs (people with CFS) can be a lot of trouble. But a CFS suffererís 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 Alzheimerís 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,

Besides whatís 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 PWCís are lazy or depressed, and if they pushed themselves a bit they could do any thing the rest of us do.... After all, they donít look sick. Fact is, CFS is a medical illness, not a psychiatric one, and all the wishing - or pushing - in the world doesnít 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 donít do anything. I donít do anything because Iím not better. On the days when I really feel bad I donít go out and you donít see me. If I tried to do anything I would be worse, but then you wouldnít see me because I would be stuck in bed. Thanks for asking, though."

"I get tired too or Iíve had that too."

Itís mainly people saying, "Iíve had that too", which is devastating, as if I hadnít lived for 53 years before getting this, as if I didnít 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? Youíre making a mountain out of a molehill. It couldnít 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 publicís misunderstanding.

Unpredictability

One PWC has essentially lost a friend of twenty-five years because of this issue. The friend just doesnít 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 didnít expect this. - Mary Schweitzer

CFS is a very unpredictable illness. Symptoms change over time and one weekís 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 canít predict even hours or minutes ahead of time how theyíll feel, or if theyíll be up for a given event. Sometimes CFS means that things take longer than usual. Itís easy to take it personally when PWCs canít be definite about plans or have to say no outright because they know they canít manage the energy expenditure, but remember, canít means canít, not necessarily doesnít want to.

"I know youíll be well enough to see me."

Maybe, maybe not. Learn to swallow your pride and take no for an answer graciously. Donít assume youíll automatically be an exception.

"How are you feeling?"

PWCís say that people donít know how to respond when you tell them you feel awful. Maybe thatís why people sometimes say," Too bad", and change the subject. PWCsí other alternative is to lie, and say theyíre fine. One PWC, who has tried and discarded that tactic, says itís simply too isolating. If your PWC friend brings it up or seems to want to talk about it, donít change the subject. Ask about them.

"Donít you remember?"

Your mind will be in a constant Ďfoggedí state,....and your eyes will have a noticeable Ďglazed over/drugged outí 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 PWCís call brain fog, come and go. Short term memory is sometimes non existent. Be patient and gentle if they canít remember something that seems patently obvious to you. CFS can lower oneís 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 canít fill no matter how often she comes back to it.

Isolation and Dependency

My brain is constantly in a fog and I canít seem to concentrate on typing or reading. I have to do everything twice. I canít sleep. And when I do sleep, I wake up still tired.

Perhaps itís 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 canít accept the new person the PWC has become. For whatever the reason, theyíre 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 theyíre feeling up to - so they know you havenít 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 theyíll 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 donít hesitate to offer to help without being asked first - and then follow through. Sometimes itís 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. Donít 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 PWCís 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 itís repair.You are denied deep sleep. The body does much of itís repair and biochemical regulation during this deep sleep.

Sleep is unrefreshing. The person with FMS canít 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 donít 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 youíve 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 canít 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 canít 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.


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