In 2012, I got very sick after several mysterious bouts of bad health. It took nearly three more years to figure out what was wrong with me. Few problems showed up on my test results, so the doctors mostly shook their heads: Without measurable data, they couldn’t even say I had a disease. That is how modern medicine works; it relies on data, measurements, symptoms, all of which constellate into a specific “disease entity,” tightly codified and closely studied. To be ill these days is (typically) to have more certainty about the source of your suffering than humans have ever had before. Your sore throat is caused by streptococcal bacteria; the lump in your breast is benign; the pain in your foot is radiating from a fractured metatarsal. Because I had no answers, I sometimes wondered if the problem was all in my head. Perhaps I was depressed. Slowly, though, I came to accept what my body was making clear: I was sick, very sick, even if no one knew why. Without data, I had to make room for a reality that included my near-total lack of control. I might never get an answer about what was wrong. I might not emerge stronger. I might die. All at once, I had stepped off the path of progress, a deluded narrative to which I—like many a good student—had clung assiduously my whole life.
Meghan O’Rourke: Lyme disease is baffling, even to experts
My life as a patient changed the day I reread a letter by the 19th-century poet John Keats. At the time of its writing, Keats had witnessed his mother die from tuberculosis, then a poorly understood disease with an unclear cause; soon his brother Tom and later he himself would die of the infection. In the letter, Keats—in his early 20s—tried to explain to his brothers the special quality that differentiated a great artist from a good one. “Negative capability,” as he termed it, is the quality “of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.”