©1996 Michelle Lapuk; Reprinted in The Carousel Network News. 1996
I am really tired. Tired in the physical sense and so tired of defending the fact that I am still sick. There are so many things that make having CFIDS so awful...the pain, the fatigue, and, yes, the attitude. The attitude of doctors, the media, and even fellow patients has made the struggle even worse.
I got sick in 1987 and have never been able to return to work since. And unfortunately, I am worse. I have read so often how CFIDS patients are supposed to get better improve over time. I don't mean to disappoint physicians and researchers, but I don't think as many people fully recover as the uplifting newspaper articles and distorted statistics indicate.
I am not writing this to depress people. I feel guilty, as if I am not trying hard enough to get well. Every time I read about someone who just got better, I thing, "Why didn't that happen to me?" Then I wait a year or so and call the so-called recovered person. And guess what? Their recovery was short-lived.
I have been involved in the CFIDS movement for years. I know hundreds of patients, and only a small handful of those I know (2) have fully recovered. Many patients claim they have regained their health, but they have instead learned to adapt to the illness. They monitor physical activity and diet, but are unable to push themselves. I'm not saying recovery is not possible; it's just not happening with the frequency that many reports indicate. I used to work 12-hour days, and go to an aerobics class daily. Until I can live my life again without hesitation and restrictions, I will not say I am well. If you want to say you are recovered, that is fine with me. If saying you can control this atrocity helps you - great. Let me tell you why it does not help me.
I have little support from family and friends. Every time a news piece (TV, print, etc.) shows up where the subject gets over CFIDS, someone calls me and says, "See, you can get better, too." This, in turn, makes me feel angry and furthers my own guilt.
Earlier in the article, I noted how physicians, the media and fellow patients portray CFIDS as an illness that just goes away. Some examples of this includes:
At the 1993 Connecticut CFIDS Association's annual meeting, Dr. Charles Lapp indicated in his lecture that 40% of patients get better within the first 2 years, and 60% recover over time. [Note: in his "CFIDS: A Real Disease" video designed to orient health care practitioners to the disease, Lapp also states that 60% recover "fully" , 35-40% recover to a great extent, then amends that to mention that 1-2% may be bedridden for the rest of their lives. - M.K.] Where do these statistics come from? If CFIDS just goes away over time, why are CFIDS specialists' office so crowded with long-term patients? (I commend Dr. Susan Levine for admitting at our 1994 annual meeting that many of her patients do not recover).
A recent ABC Good Morning, America piece ended with the quote, "The majority of patients get well over time." About 6 months ago, a 700 Club TV program ended with a now-recovered patient roller-blading up a steep hill. After both these pieces aired, I got the obligatory, guilt-inducing phone calls. "See, you can do it, too." "If they can do it, why can't you?"
I have explained how the doctors and media have betrayed me, but then came the final blow, from a PWC. Patients must remember that there are myriad symptoms with this complex illness. We are not all the same. One of my most annoying symptoms is vomiting. It may not be an affliction I share with many other patients, but it is persistent nevertheless. One day, shortly after throwing up my lunch, a fellow patient said to me "You're too sick to have CFIDS. I don't throw up. I can work. Don't you realize it is all mind over matter? If you went to work, maybe you'd feel better." I felt as if I had been hit with a ball from one of my own teammates. How insensitive! I was so hurt, yet the guilt ensued. Would you tell a paraplegic to just get out of his wheelchair?
I am not sure why many feel the need to put a positive spin on this horrific disease. Perhaps doctors just don't want to admit they don't know that this is. Perhaps they feel they would be encouraging lamenting, laziness, and self-pity. I am not wallowing, and I have not given up. But I do think the positive recovery spin has done the CFIDS community a great disservice.
Many patients are worried we will be discriminated against and treated like outcasts if the world believes in the severity of CFIDS. I guess I would rather be treated like an outcast than a faker. I think that somewhere in all the hope, the patients' suffering has been forgotten. It must not be forgotten that many people are truly disabled and that many lives have been destroyed. Until the public image of the disease changes, then why should Congress allocate additional funding, and why should Social Security grant disability benefits for an illness the public believes will just go away by itself?
I hope that someday I will see a television program or read a newspaper article on CFIDS that shows how terribly sick the patient is instead of how great their recovery has been. Then perhaps I won't feel so alone and guilty...
Melissa Kaplan comments...
In the discussions following the videos, we found that these individuals are themselves suffering from CFIDS or FM - not family, friends, caretakers, medical or social professional here to gain information. One man has been suffering extreme FM pain since 1968. Others have been doing the doctor dance, going from one to another, trying to find out what is wrong for years. Where the hell were their families and friends? The answer is easy - after all, NBC and the Lansing, Michigan medical examiner have been telling people for several months now that CFIDS and FM aren't serious life-threatening illnesses, that most people recover fully. So, rather than encouraging loved ones by accompanying them to find out information, to doctors appointments to listen to what the doctor has to say and help clarify things for the brainfogged, families and friends are making their sick loved ones deal with it on their own. Maybe, the healthy ones are apparently thinking, if the sick one gets "tired" enough of going it alone, they'll just start hitting the track or jazzercise class and get back to having a life again.
One other thing occurred to me: how many cases of "recovered" involved patients who live alone and who do not have any assistance for activities of daily living, including basic housekeeping (dusting, vacuuming, laundry, changing the bed, cleaning the kitchen and bathroom, etc.), grocery shopping, cooking or preparing nutritious meals, banking, essential errands, doctor's appointments, library and pharmacy runs, etc., let alone who are alienated from their 'loving' families and friends who just don't understand why they don't just get on with their lives...
In fact, research on populations of elderly people finds that those who have strong support systems are better physically than those who are isolated both by disability and ignored by their family and friends. Research on chronically ill populations also finds that those with strong support systems and acceptance do better (not that their illness goes away or disability disappears) than those who lack such support.
The families and friends who keep blaming the patient for being sick ought to start looking at themselves a little more closely...
Doctors and the CDC are starting to speak out about the severity of the disease and low recovery rate. They have not done it enough, however, or loud enough, for the rest of the medical, governmental, and media communities to sit up and take notice.
January 2000 Update:
And so, we keep on struggling, for answers, for acceptance, and for action. And for families to start supporting their sick members, rather than contribute to their burden of illness and stress.
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