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Stress and Chronic Fatigue Syndrome/M.E.

By Mary Schweitzer, © 1999

Nearly all CFS patients experience that point where a doctor sits back, sighs, and says, "Are you under a lot of stress?"

What on earth do doctors mean when they say that?

I've always experienced it as a sign of defeat or some type of failure on my part to communicate to the doctor the degree to which I am ill. Ten years ago, I experienced increasing pain in my abdomen; within six months the pain was so strong I could barely stand up straight. I had a lot of trouble communicating to the doctor precisely where my pain was, and he concluded that I had an ulcer, possibly one that was bleeding (though there was no evidence of blood). He refused to refer me to a gastroenterologist, put me on Zantac, and lectured me on my "stressful" life style (having both a career and a family). Finally, under some protest, he agreed to let me be tested. Not only did I have a gallstone the size of a golf ball, but there was no evidence of an ulcer, anywhere, ever. My problem wasn't "stress." It was pain!

Every day that experience is duplicated when a patient with severe fibromyalgia or CFS/M.E. faces a doctor who does not know how to diagnose these diseases. The phrase "I can't find anything wrong with you" is then followed by "Are you under stress?"

How do you answer that question? Of course the patient is under stress! Long-term pain is enormous stressful. So is chronic illness.

According to recent demographic studies by Leonard Jason, et al, at DePaul University, and by Bill Reeves, et al, at the CDC, over 90 percent of patients with the disease CFS/M.E. have not been diagnosed. Those who are diagnosed have generally endured a long and arduous process.

What happens to a patient who is severely ill and remains undiagnosed - and therefore untreated - for years and years? First, you lose your job. When you lose your job, you lose your health insurance as well as any chance at private long-term disability payments. Without disability insurance, unless you have a spouse or parents who are willing to support you, one by one all of your assets disappear. Without health insurance, you can no longer see the doctors who specialize in the disease, and are forced to go to emergency rooms or clinics when the situation gets so bad you can't stand it any more. It seems that there is no one in emergency rooms or public clinics who has the slightest idea of what chronic fatigue syndrome is.

What could be more stressful than this?

Even those of us lucky enough to have disability insurance, to have health insurance, to have a supportive family and friends, must face an indeterminate length of time when we can no longer do anything that we used to. When I collapsed, I had two book-length manuscripts half-finished in the computer, and numerous papers I had been presenting at conferences. I could no longer read what I wrote, so I could not edit them into shape for publication. They appeared to be lost forever - ten years of work down the drain. Let me assure you that this is stressful.

I used to love downhill skiing. I imagined that someday I would be too old for the expert slopes, but I could still enjoy gentler trails and a slower style of skiing. On the day I was diagnosed with CFS, the doctor told me I would never ski again. The same doctor also mentioned that most marriages with a CFS spouse end in divorce. Then he asked me if I was under stress!

I had already lost the ability to drive, making me dependent on others for the simplest of needs. During the next five years I would continue to deteriorate. Within two years I was in a wheelchair. Within four I needed help brushing my teeth. How bad could this get? I was petrified. This was stressful.

While I was never the perfect housekeeper, my house was clean - and I always straightened it up and decorated it for the holidays. I loved to cook. The dishes might not get done until the next morning if I was tired, but they got done within 24 hours. Now, with my husband forced to care for me completely, the house began to fall apart. We tried to get a maid service, but they wanted the house "straightened up" before they cleaned - I couldn't do that, and my husband wouldn't. I called help services for disabled persons, and they said that they could not do anything because most of the mess was caused by my husband and daughter, and they could only clean my part of it. There was no time to clean the gutters, so the rain fell like a waterfall all along the sides of the house. The extra water leaked into the basement, which was soon covered in mold - the only substance to which I am allergic. I could do nothing about it. Even the rubber drain cover in the kitchen sink took on a slimey brown covering.

It was dangerous for me to even try to clean up, because I was capable of pouring household cleaner into the coffeepot or silverware drawer - my confusion was that great. I had no strength whatsoever and could not pick up anything from the floor. I was dependent on my family for laundry; if they forgot, I had to wear the same clothes for days. Eventually I had to stop taking baths, because the bathtub became too filthy. Until the visiting nurses saw my condition and got me a bench for the bathtub, I was putting a towel on an overturned bucket and trying to take my showers that way.

When my family forgot to leave something for lunch, I did without lunch. If crackers was all there was in the house to eat, crackers is what I ate.

Year after year, I watched it all deteriorate around me: my career, my home ... my life.

This was stressful, a type of stress that no one who has not experienced it can imagine.

If the CDC truly believes that a major contributor to Chronic Fatigue Syndrome is stress, then we have to face the major causes of most of the stress that sick people face: doctors who misdiagnose illnesses and insist that it's the patient's fault (by being unable to handle something nameless called "stress"); insurance companies that refuse to honor their contracts; employers that fire employees who had worked hard for years, instead of getting the employee diagnosed; a concept of "disability" that permits sick people to be fired for "absenteeism." And a complete lack of social support for invalids and their caretakers.

The major sources of stress for people with CFS is not a lifestyle that they "can't handle," or goals that are too high for their reach, or (in the case of yuppie women) "trying to have it all." The major sources of stress is fear, fear that stems from being undiagnosed, misdiagnosed, told you should improve in two years and it's your fault if you don't, doctors who know nothing about the current state of the literature on CFS. Fear that stems from a sudden drop in income, from having to beg for the private and Social Security disability insurance that a person worked for all his/her life. Fear from being treated like a criminal, guilty until proved innocent. Ultimately, for many, the fear of losing the little you have, fear of losing your loved ones, and then the horror of having it all actually happen. Fear of dying in abject poverty, alone, uncared for, ill-clothed, malnourished, in pain and in filth.

Every day, a doctor asks a patient with CFS "are you under stress?" - and the patient responds with a stricken, betrayed, frightened look. Why? Because it is impossible to have CFS and not be under stress!

If the CDC is serious about stress being a major factor in illnesses such as CFS/M.E., then the message must go out to the community that the right question is not, "are you under stress?" Doctors must learn to ask instead, "how can I reduce your level of stress from this disease?" -- and mean it.

Mary Schweitzer, PWC since 1990, collapsed October 24, 1994.

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