Putting a Name to It: Diagnosis in Contemporary Society

Preface

Preface I don’t get sick very often. In fact, as I write these pages, I can’t remember the last time I had a cold. But like most mortals, I have been sick before. One particular bout of illness marked me more than others. It was more than 20 years ago, but I remember things well. I had a low-grade fever, enlarged lymph nodes under my arms and in my groin, a strange swelling on my lower leg, and headaches. These symptoms persisted for days, lengthening to weeks, and I couldn’t go to work. I was a nurse in a medical oncology unit, and to have a fever made me a risk to my immunocompromised patients. I went to the HMO to find out what was wrong. “It’s nothing,” the doctor told me and sent me home to stew. But I didn’t get better. A week went by and the fever persisted. It didn’t seem right that I (she-who-is-never-ill) would not bounce back more quickly. So I went back to see the doctor. “Could it be the yuppie flu, or something like that?” I ventured, having read about this curious disorder in the paper. “Of course, it couldn’t!” she snapped at me. “Didn’t I tell you to just wait this out?” I didn’t know that much of the medical world refuted the existence of “yuppie flu” or that many doctors were irritated by the lay interest in the disorder. She signed my sick leave form nonetheless, and I slunk away, castigated. Listless and a bit confused, I decided to leave the city and stay with my mom and dad. My husband drove me and the children to the town where I grew up. I paid an immediate visit to the family practice I had attended since high school, thinking that the doctors there would be kinder and maybe more helpful. The young resident who saw me was immediately as concerned as I was about my illness. I pulled up my pant leg and showed him my lump, making a half-hearted joke about “my tumor.” He couldn’t hide his surprise as he looked at the raised and angry bump on my shin that had looked for weeks like a permanent almost-bruise. “I think it would be a good idea to try to rule out malignancy,” he said, as blunt as you like. On one hand, he shocked me badly. xii Preface On the other, he finally spoke to what had been bothering me for more than two weeks. What was the meaning of this illness? Was I going to be OK? His concern took me on a long journey to find the name for what ailed me. Without a diagnosis, I was rudderless. What did it mean to have all these symptoms, not knowing what they were? Did I have lymphoma, or something worse? Would I see my children grow up? Or was I simply having troubles shaking a viral infection, something just a bit more tenacious than usual? Without a diagnosis, I had no way of understanding my condition, what to expect, even where to turn for support. X-rays, biopsies, skin tests, and blood work assembled a clearer picture. The lump became erythema nodosum; the enlarged lymph nodes, noncaseating granuloma; the illness, sarcoidosis. Sarcoidosis was a new word for me, not part of my vocabulary. And because this news was delivered in the pre-Internet era, I couldn’t quietly hunker down in front of a screen and follow a hundred different trails to information about the condition and its implications. Despite being a health professional, I didn’t know how to find out more other than by asking my doctor or talking to my doctor friends. I would have had to venture to the medical library, a foreign land, and rummage about, hoping no one would take me for the imposter I would have felt I was. The ignorance gave way to fear when my enthusiastic young resident, who had unsettled me previously with his blunt acknowledgment of potential malignancy, just as bluntly told me that people die from sarcoidosis. Either it comes on chronically and progresses, he explained, or it begins acutely but then recedes. Was this acute? I wondered, thinking about the low-grade symptoms I had experienced. Neither the doctor nor I had an answer to that question, although today, with 20 years hindsight, we know it was. The...