Yilin

“The connections between and among women are the most feared, the most problematic, and the most potentially transforming force on the planet.”
― Adrienne Rich

“What is new is that today, in our secular, individualistic nation, an amorphous illness is seen inevitably as an opportunity to uncover the
*authentic* nature of the selt and improve it, a project squarely in line with other obsessions of our neoliberal society. The focus on personal realization obscures the fact that it is not our *selves* that are wrong but the very structure of our society, with its failing support systems, its poor chemical regulation, its food deserts, its patchwork health care delivery. Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being *about* our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“In the absence of certainty, medical science remains unsure what story to tell. Too often it turns away from patients rather than listening to the long and chaotic stories we tell, narratives that start and stop and double back, searching for meaning in the or house rash that broke out that day or the car accident that triggered pain of the death after which nothing was the same.

Indeed, one reason that people who may or may not have Lyme disease cling to the diagnosis of chronic Lyme as a name for their medically unexplained symptoms is that the impersonal nature of modern medicine has no better explanations, at least not on the level of storytelling. When we suffer, we want recognition. Where science is silent, narrative creeps in.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“My life as a patient changed the day I reread a letter by the nineteenth-century poet John Keats in which he offers a theory of what makes an artist great. At the 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 himself would die of the infection. In the letter, Keats - in his early twenties - tried to e plain to his brothers the special quality that differentiated a great artist form a merely good one. “Negative Capability,” as he terms it, is the quality “of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason.”

I couldn’t escape the sense that Keats’s words about the necessity of “being in uncertainties” derived form his own experience of living with consumption’s impact on his family. In fact, his formulation of negative capability seemed to be a key to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to the alive *is* to be in uncertainty.) I was grateful for his words, because they reminded me that I wasn’t living off the known map of human experience. Rather, I had felt invisible in my illness, I realized, because American culture - and American medicine within it - largely strived to downplay the fact that we still know so little about illness. A doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: *Just do it. What doesn’t kill you makes you stronger.* no wonder that as a patient I was bent on an “irritable reaching after fact & reason.” The shadowland I lived in, forced against my will into what Keats called the great “Penetralium of mystery,” was an uncomfortable and unsatisfying place, especially since I lived in a culture that Donita’s the importance of triumph over adversity - a culture that insists on recovery.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness