Skepticism permeates our profession. It is ingrained during medical training and reinforced by professional experience… Healthy skepticism is the “in’ attitude for intelligent, discriminating physicians.
But healthy for whom?
Four years ago I was diagnosed as having Chronic Fatigue Syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering. In one early report the average CFS patient had previously consulted 16 different physicians. Most were told that they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. The situation is better today, but not by much…
Is CFS a real disease? I believe it is, but I cannot settle that here. I would only plant this seed in the mind of skeptics: What if you are wrong? What are the consequences for your patients?
Imagine for a moment that you are the Subjective patient, not the Objective physician. You catch a “cold’ and thereafter the quality of your life is indelibly altered. You can’t think clearly .. sometimes it’s all you can do to read the newspaper or follow the plot of a television program. Jet lag without end. You inch along the fog-shrouded precipice of patient care, where once you walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms come and go, wax and wane. What is true today may be partially true tomorrow or totally false next week. You know that sounds flaky, but, dammit, it’s happening to you.
You are exhausted, yet you can sleep only two or three hours a night. You were a jogger who ran three miles regularly; now a walk around the block depletes your stamina. Strenuous exercise precipitates relapses that last weeks. There is nothing in your experience in medical school residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness. “Fatigue” is the most pathetically inadequate term.
You too might wonder about some of your symptoms had you not talked to other patients with similar experiences … or talked with physicians who have seen hundreds of similar cases…
I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psychospeculation of their physicians was only frightening and infuriating – not reassuring. It told them that their doctors had little understanding of the real problem. Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them. They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills. There is nothing that you hold dear that this illness cannot take from you. Nothing.
Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust. The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years. I shudder to think of the death and misery caused by the skeptics during that half-century.
Internists have long prided themselves on incisive intellects and superior diagnostic skills. It is time for those skills to focus on the complex subtleties of this illness. I ask for your patience. CFS is sufficient indignity by itself, do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. But if you take that time, you can do a world of good. CFS may frustrate you, but it is equally fascinating and rewarding. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds.
Reprinted with permission from J.A.M.A. eb. 27, 1991, Vol.265, No.8, p.964. © 1991, American Medical Association.