A million thanks for running your article on chronic Epstein-Barr virus ("Here's Another Illness to Worry About" by Samuel Greengard, Sept. 23). I have been disabled with this illness since July, 1979, when I, like Sonja Aiken, also could not get up from my desk at work. Within a week I was so weak that I could walk only a few feet without collapsing. My life was measured from chair to chair. And, on my bad days, it still is today.
I have been very fortunate in that my family and friends have stuck staunchly by me.
But what is not mentioned in your article--nor do I see mentioned anywhere in the vast literature sent to me by a CEBV support group--is a discussion of how a person is treated by the medical profession when his illness defies diagnosis. (CEBV was not described in the medical literature until January, 1985 and therefore could not be diagnosed until recently.)
It seems that the ill person, fearful of antagonizing the only people who can potentially help him, does not dare to mention (in print, though this is a hot topic of conversation) his ill treatment at the doctors' hands. Their power is complete, for sick people cannot run out and take a medical degree to help themselves. Also, there is an important rule: You are only sick if a doctor says you are. Ask the insurance group that cut off my disability years ago. If I were to antagonize them, my doctors could write my company that I wasn't ill and I would lose my medical insurance as well. Better to lie low.
Here's what happens when you cannot be diagnosed. Bear in mind that my doctors are top-notch. First, the doctors are intrigued. They run a million tests. All are negative. They have reached the limits of their knowledge. You would think they would say they just don't know. But no. Suddenly they begin to treat you with the contempt and disgust that was shown to lepers in previous times. You have severe emotional problems, they tell you. They send you to a psychiatrist, informing him in advance of your case. You go in, full of bright and naive hopes of clearing yourself of this charge. But you are hanged before you walk in the door. You sketch your life history in 30 minutes. The psychiatrist attaches dark motives to everything you have done. You're sick because you want to be, you are told. No, you respond. Well, you are, but you don't know it because you are so deeply disturbed, you are informed. This is known as "denial," he tells you.
An example: I told one psychiatrist that when I became ill I loved my job, was up for a promotion and a raise, and had met a nice fellow to date. Life was smiling on me. She said: "You created this illness because you are afraid of money, afraid of success, afraid of sex and commitment." Gosh. Her bill: $75. You are unfailingly polite through all this, because a report will be sent back to your doctor. Got to look sane.
I can best describe such a visit as mental rape. In a single 50-minute visit you have been coerced against your will to relate your life, and then are degraded and humiliated, your sunniest moments twisted into sinister plottings.
All because of a virus.
After I lost my disability insurance, I no longer had to submit to such visits.
But I still had to endure similar assaults from doctors. One even called me one evening to heap abuse on me and tell me I was being ill because I wanted my mother to take care of me. Before my illness, I went to Europe on my own, lived there for four years, studying and ultimately working as a translator. Is that the action of a dependent person? Apparently so. One psychiatrist told me that "normal" people don't go to live in Europe.
I see Sonja Aiken in your article, her good looks, her Mensa membership, her great job. Did all this weigh in her favor when she searched for an answer? I doubt it.
If you are hard to diagnose, look out! It's the old Napoleonic Code: guilty until proven innocent.
I have come to think of my doctors as fine race horses--beautiful and thrilling out on the track, but so high-powered that they tend to injure themselves in their stalls.
I would like to remind them of the Hippocratic oath in which it says "primum non noere." First do no harm.