A Patience’s story: What’s Wrong with Me?

Stuart SchlossmanMisc. MS Related

I had an autoimmune disease. Then the disease had me.

BY 

Online, I found a welcoming sick ward of fellow-sufferers, and I started to live there.CREDITILLUSTRATION BY ANNA AND ELENA BALBUSSO
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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