“What’s Wrong with Me?”
“The doctor told me to take a replacement thyroid hormone and check back in six weeks. By then, I would be feeling better. This was the way medicine worked: tests told you what was wrong, and doctors told you how to fix it.
But I didn’t feel better in six weeks. I felt worse. My blood pressure was alarmingly low. I got excruciating headaches whenever I ate, and one day when I got out of bed I fainted, gashing my arm on a bedside glass. My joints hurt, and I began to have a stinging pain in my back. There was an itching sensation, which would grow in severity, to the point that I felt I was being stabbed by hundreds of fine needles. None of these were usual symptoms of thyroiditis. My friend Gina and I went to get a juice one afternoon — like me, she worked from home — and I got so dizzy that she had to steady me until I could sit. “You have to get better,” she said to me, “whatever that takes.” She looked at me as if I were really sick. Until then, I had half believed — after years of doctors implying as much — that it was all in my head…
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…
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…
And so the person suffering from chronic illness faces a difficult balancing act. You have to be an advocate for yourself in the face of medical ignorance, indifference, arrogance, and a lack of training. (A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill.) You can’t be deterred when you know something’s wrong. But you’ve also got to be willing to ask how much is in your head — and whether an obsessive attention to your symptoms is going to lead you to better health. The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears.”
I identify with this so much. When I’m been feeling really fatigued but I have to go out for some reason, I sometimes feel like I am losing track of myself, or like nothing around me is solid. Like I am moving forward purely out of faith and rote memory; it’s possible that I will arrive at the supermarket, it’s possible that this body will find itself in an empty field.
Related: Lessons from a Delayed Diagnosis; “Medicine’s Women Problem”; “Is Medicine’s Gender Bias Killing Young Women?”; “Can healthcare be cured of racial bias?”; “The Cost Of Assuming Your Doctor Knows Best”
