Dealing with long-term illness

Interesting:

My experience of feeling unwell for years before I got a diagnosis turned out to be typical. According to aarda, it takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis. Patients can end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist. A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient’s care, as at a cancer center. (Israel now has one, the first of its kind.) Virginia Ladd, the president and executive director of aarda, told me that funding is a problem: donors tend to give to specific diseases, and, because few people understand the connection between M.S. and ulcerative colitis and Hashimoto’s, no one gives to “autoimmunity” as a category. (Eighty-five per cent of Americans can’t name an autoimmune disease.) As it is, many clinicians assume that the patient, who is often a young woman, is just one of the “worried well.”

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.”

Because I had read that autoimmune conditions could be triggered by chemical exposure and by diet—some thyroid patients are sensitive to gluten, which can exacerbate their symptoms—I became hyperconscious of what I ate and what I exposed myself to. On more than one coffee date, walking through the leafy streets of Fort Greene, my friend Gina and I talked about the mysteries of chronic illness. “How are you doing?” she asked one morning. “I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to go for a day without thinking about my body.”

A common symptom of autoimmune diseases is debilitating fatigue. Complaining of fatigue sounds like moral weakness; in New York City, tired is normal. But autoimmune fatigue is different from a sleep-deprived person’s exhaustion. The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday dinner required a huge act of will. Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible. I might, at the nadir of my illness, have been able to write one of these sentences, but I would not have been able to make paragraphs of them.