Stepping Off the Merry-go-round

September 4, 2017

In my Narrative and Medicine class this semester, I asked everyone to share with the class blog a narrative related to medicine/health/illness in order to introduce themselves to the class. This was my contribution:

When I was a toddler the doctors told my mother I had cystic fibrosis. I didn’t. They were bad doctors. Or maybe they were good doctors, but we were poor at the time and seeing disinterested caregivers at the clinic. My father left my mother shortly after I was born (or precisely when I was born? I can never get the chronology straight and not surprisingly they both have a different version of events), and my mother soon left Columbus with her first-born me and headed back to her native New York City where she soon discovered that I was not a font of health. New York in the late 60s (and throughout my childhood in the 70s) was incredibly polluted. The year I was born, and shortly after my mother and I arrived in the city, there was a major smog event in the city —big enough to even merit its own Wikipedia entry. I have no proof that the timing led to my health problems, but it is the closest I’m going to come to getting a Wikipedia page so I’m going with it.

I mention the cystic fibrosis misdiagnosis—however short-lived it was—not so much because it certifies my lifelong sickly creds, but because it marks the beginning of a long, on-and-off-again career on the diagnostic merry-go-round. These past several years especially have been an often dizzying ride in search of a name—a diagnosis that will unlock all my ills and give me a nice ribbon to wear and an internet community of fellow-sufferers with whom to bond, complain, and fund-raise.

In the long run, however, I sometimes wonder if I am not fortunate to have never arrived at a name for what my doctors and I now call my “underlying condition.” After all, along the way, I have learned about a broad range of conditions, gotten to know dozens of caregivers, and I have—with the help of my caregivers and family—learned to manage my changing health and symptoms (most days, at least). And without a community of fellow-sufferers to tell me what to expect next—which, if I am honest with myself, is what I really crave in a “master” diagnosis—I have had to learn to start letting go of my desire for visions into the future and actually deal with my illness one day at a time. It’s not easy and I can’t say I love it, but I know it is good for me—better at this point than any name for my autoimmune, respiratory, and neurological cocktail will likely be.