I had an autoimmune disease. Then the disease had me.
BY MEGHAN O’ROURKE
Illness narratives usually have startling beginnings—the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine. I got sick the way Hemingway says you go broke: “gradually and then suddenly.” One way to tell the story is to say that I was ill for a long time—at least half a dozen years—before any doctor I saw believed I had a disease. Another is to say that it took hold in 2009, the stressful year after my mother died, when a debilitating fatigue overcame me, my lymph nodes ached for months, and a test suggested that I had recently had Epstein-Barr virus. Still another way is to say that it began in February of 2012, on a windy beach in Vietnam; my boyfriend and I were reading by the water when I noticed a rash on my inner arm—seven or eight vibrantly red bumps. At home in New York, three days later, I had a low fever. For weeks, I drifted along in a flulike malaise that I thought was protracted jet lag. I began getting headaches and feeling dizzy when I ate. At talks I gave, I found myself forgetting words. I kept reversing phrases—saying things like “I’ll meet you at the cooler water.”
One morning in March, I sat down at my desk to work, and found I could no longer write or read; my brain seemed enveloped in a thick gray fog. I wondered if it was a result of too much Internet surfing, and a lack of will power. I wondered if I was depressed. But I wanted to work. I didn’t feel apathy, only a weird sense that my mind and my body weren’t synched. Was I going mad? Then I started to think about the curious symptoms I’d had on and off for years: hives, migraines, terrible fatigue, a buzzing in my throat, numbness in my feet, and, most recently, three viruses (cytomegalovirus, which kept recurring, as well as parvovirus and Epstein-Barr).
My internist did some blood work, and called a few days later. “You’re fine—just a little anemic,” he said reassuringly. For years, doctors had been telling me I was a little anemic, or a bit Vitamin D deficient. But now I was sure that something else was going on.
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