At the age of 45, David Rabin was Director of Endocrinology at the Vanderbilt Medical Center. His research in the fields of metabolism and reproduction was flourishing. He and his wife travelled extensively and enjoyed an active social life until Dr. Rabin began to experience the first signs of Amyotrophic Lateral Sclerosis (ALS, commonly known as Lou Gehrig’s disease), a chronic progressive neurologic condition that eventually paralyzed him completely. While Dr. Rabin was well aware that there was no known cure for this disease, he was totally unprepared for how profoundly it would affect his remaining productive years. Where they had once treated him as an esteemed peer, his colleagues now took pains to avoid him. Physician friends immediately broke off all communication. His wife was treated as a premature widow by friends she encountered socially. In short, he was considered an outcast.
The Rabins reckoned that if this had happened to them in their enlightened social network, then it must also happen to others. They published an article in a prestigious medical journal documenting the reaction of fellow physicians to their illness. The response was overwhelming. Chronically ill physicians from all over the world expressed pain, anguish, and despair in a flood of letters and phone calls. Thus the Rabins came to appreciate that chronic illness is a social disease in the context of modern medical ideology (Rabin & Rabin, 1985). The experience of the Rabins is disturbing, not because it reveals an aberration, but because it is so very predictable. It illustrates the degree to which the social world and a specific disease process interact to create an illness experience for those involved. Further, it shows us how far apart are the objective medical view of a disease and the subjective personal experience. An ironic note to Dr. Rabin’s story was that he had earlier rejected a career in clinical neurology because he reasoned that the diagnostic problems were mere academic exercises in the absence of definitive therapeutics (Rabin, Rabin, & Rabin, 1985). If you can’t cure the problem, what then is the point? The point of studying chronic illness is much larger than simply the hope of curing chronic disease. It has to do with the very essence of human aspirations and meanings. People do not become less human, less interesting, or less deserving just because they have unresolvable or disabling conditions. Rather, they continue to learn, to adapt, and to live their lives as well as they can manage. In other words, they seek a state of health that represents their best effort within the specific challenges of their disease. And helping people to achieve this health is, after all, what the health care system is supposed to be about.
CHRONIC ILLNESS EXPERIENCE
What we know about chronic illness experience is limited and fragmented. Until quite recently, it was difficult to justify doing research on a vague and nonspecific issue such as “chronic illness.” Instead, scholars were encouraged to study aspects of particular diseases, the idea being to understand each disease as a distinct entity (Rolland, 1988). However, this approach denied the more experiential nature of chronic illness, in that sufferers seem to have much more in common than was previously thought possible (Strauss, Corbin, Fagerhaugh, Glaser, Maines, Suczek, & Wiener, 1984). The term chronic refers to diseases of long duration, in which there may be little change or slow progression. It is the opposite of acute, the kind of disease that we acquire and, hopefully, resolve fairly quickly. Despite the cherished myth in our society that chronic diseases are not terribly serious (or are at least not life-threatening), most of us will eventually die of one (Burish & Bradley, 1983). Among chronic diseases there are those that are painful and those that are not, those that will eventually result in death and those that will not influence mortality, those that disfigure or disable and those that influence a person in more subtle and invisible ways (Nordstrom & Lubkin, 1990). The similarity between them is that the problem cannot normally be “fixed” by modern health care methods (Curtin & Lubkin, 1990).