The Invisible Kingdom: Reimagining Chronic Illness - Softcover

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Meghan O’Rourke is the author of The Long Goodbye and the poetry collections Sun in Days, Once, and Halflife. The recipient of a Guggenheim Fellowship and other awards, she is the editor of The Yale Review. Her writing appears in The Atlantic Monthly, The New Yorker, The New York Times, and more.

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Drawing on her own medical experience as well as fifteen years of interviews with doctors, patients, researchers, and public health experts, Meghan O'Rourke's incisive new work speaks to an urgent subject: the epidemic scale of autoimmune disease in America - even greater with the advent of 'Long Covid' - and where we go from here. Blending lyricism, erudition, candor, and empathy, O'Rourke reveals crucial, subtle complexities about the American struggle with chronic illness and autoimmune conditions, and

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one

"Gradually and Then Suddenly"

In the fall of 1997, after I graduated from college, I began experiencing what I called "electric shocks"-stabbing sensations that flickered over my legs and arms every morning, as if I were being stung by tiny bees. The shocks were so extreme that as I walked to work from my East Village basement apartment, I often had to stop and rub my legs against a parking meter; if I didn't, my muscles would twitch and my legs would jerk. My doctor couldn't figure out what was wrong-dry skin, he proposed-and eventually the shocks went away. A year later, they returned for a few months, only to go away again just when I felt I couldn't bear them any longer.

In my twenties, the shocks and other strange symptoms-bouts of vertigo, fatigue, joint pain, memory problems, night sweats, tremors-came and went. For a year, every night around two a.m., I would wake up in a sweat to find hives covering my legs, leaving me itchy and wide awake, my pajamas and sheets so wet I had to change them. Doctors prescribed a daily dose of antihistamines until the hives went away. There was a test that suggested lupus, and then a follow-up that showed nothing was wrong; my lab work looked fine. "The tests were all negative. It's just one of those things that will go away," a specialist told me. I remember thinking, Don't you want to know why I have severe hives?

In the way of women who have internalized disordered ideas about food and control, I associated my strange bouts of fatigue and discomfort with eating poorly (even though I ate a reasonably healthy diet). It was easy, in those years, to feel that a lack of dietary discipline played a role in my exhaustion, because I could tell, vaguely, that certain foods made me feel worse, leading me to assume responsibility for my own unwellness. I toggled between the conviction that something had to be wrong-I didn't feel OK-and the conviction that I was to blame, and if I just stopped eating sugar, or pizza, say, I'd be fine.

One night, I woke up suddenly from a nightmare that a man in a dirty gray sweatshirt was stabbing me. My period had started, but in addition to the cramps I had a sharp pain in my lower right abdomen. The pain grew in magnitude until, heat flushing my body, I suddenly vomited. I thought perhaps I had appendicitis, but the pain went away an hour later, just as I was preparing to go to the ER. "Everyone feels cramps," my gynecologist told me when I asked about it.

At the advice of a friend, I went to see her gynecologist. This doctor listened and nodded when I mentioned the stabbing pain; I felt relief at the recognition. She did an exam and ultrasound. "I think you might have endometriosis, an immune-modulated disease where tissue from the uterus gets out and coats the abdomen and other organs, causing pain," she said. "But it doesn't really matter unless you want to get pregnant: it can cause infertility. Later we might want to address it with surgery. For now, I'd just take ibuprofen during your period." She gave me some tissues and I wiped myself, dressed, and left, puzzled by the way my pain had been relegated to a sign that my fertility might be compromised, not a problem in its own right.

When I was twenty-four, I started waking up with a feeling that a foggy miasma filled my brain. I would go for long runs before work to clear my head, lacing up my shoes, sweating off the sleep hangover. I thought everyone felt this way, that I was just fighting off a cold. But why was I so often on the verge of a cold-more than anyone else I knew? Periodically, I would start digging a little. In 2005, around the time of my twenty-ninth birthday, I was strangely enervated. I remember googling my symptoms and being struck by how much they matched those of several autoimmune diseases. I showed the results page to Jim; as the screen cast a blue light against his face, he nodded. "You are tired a lot for someone so young," he said. But then my doctors would reassure me that my lab work looked fine, and I'd return to trying to power through.

My tendency to ignore my symptoms derived in part from the fact that I grew up in a family that was largely indifferent to matters of health. As a child in Brooklyn-my parents were teachers at the school I attended-I had been raised not to think too much about my body. My parents had moved to the city from New Jersey, where they had grown up in large Irish American Catholic families. They were pragmatic and rather stoical. Like many in their baby boomer generation, they saw doctors as unquestionable experts. You didn't go to them unless you had a high fever or a bad fall or a wound that needed stitching. In that case, you got a diagnosis, you took medicine or had surgery, and you got better, more or less in that order. But if the doctor told you nothing was wrong, nothing was wrong. My parents believed in the power of Western medicine, and therefore so did I.

Ours was a family where health was not ever thought of as something to optimize or even talk about. So they took us to the doctor regularly and handed out Tylenol for fevers, but if the problem at hand was vague or seemingly minor, they tended to ignore it, telling us to buck up. As a kid, I had lots of "small things" wrong-bad allergies, muscle pain, poor digestion-which in retrospect I suspect were subtle clues about what was coming, but my parents did not pay much mind to them. I got used to being uncomfortable, in other words, and I internalized the idea that my mentioning my discomfort made me fussy-"The princess and the pea," my mother once said, in irritation, making it clear that I was demanding too much when I complained.

Still, there were moments that suggested something was not right. In July 2008, I had an early dinner with my mother-who was then on her fourth round of chemotherapy for stage 4 colorectal cancer-and my father on their patio in Connecticut. It was ninety degrees, and the sun was still up. The patio smelled of mint and basil and the air was thickly humid. I was shivering so much I put on a sweater. "You look more uncomfortable than I do," said my mother, giving me a sharp glance, her dark eyes tightening with unusual concern. "Are you OK?" I wasn't sure. When I woke up the next morning, I was exhausted and foggy headed. My mother knocked on the door, wanting to take a walk on the beach. Her black eyes were bright with the eagerness to live, and I found myself thinking that it seemed like my mother, despite undergoing chemotherapy, had more energy than I did.

All this was the backstory (not yet recognized as a story) to that moment in Vietnam when I found myself gazing at the angry red bumps on my wrist. This rash means something, I thought, trying to return to my book, as the wind whipped the palm trees and a large leaf clattered to the ground. All these little problems-they mean something. I stroked the bumps as if they could spell out a word that would unlock the mystery.

At home in Brooklyn, three days after Jim and I returned from Vietnam, I developed a low fever. It was February 2012. Inside our prewar apartment the radiators hissed and clanked, sending heat through the rooms. Jim had to travel to a conference. I slept strange hours tangled in sweaty sheets. My limbs felt heavy, watery. For two more weeks, I drifted along in a flu-like malaise that I thought was protracted jet lag. At the time, to support my life as a writer and journalist, I taught in the graduate creative writing program at New York University. I had also taken a job as a visiting writer at Princeton. I was trying to start writing a new book, but it was going slowly. I couldn't seem to focus.

The jet lag did not go...