Bethany

“The medical uncertainty compounds patients' own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me⁠—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.

It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“It is no coincidence then that doctors and patients and the entire Lyme community report—anecdotally, of course, as there is still a frustrating scarcity of good data on anything Lyme-related—that women suffer the most from Lyme. They tend to advance into chronic and late-stage forms of the illness most because often it's checked for last, as doctors often treat them as psychiatric cases first. The nebulous symptoms plus the fracturing of articulacy and cognitive fog can cause any Lyme patient to simply appear mentally ill and mentally ill only. This is why we hear that young women—again, anecdotally—are dying of Lyme the fastest. This is also why we hear that chronic illness is a women's burden. Women simply aren't allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis. In the end, every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis.”
― Porochista Khakpour, Sick: A Memoir

“But Carol Gill says that it is differential treatment—disability discrimination—to try to prevent most suicides while facilitating the suicides of ill and disabled people. The social science literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives. The case for assisted suicide rests on stereotypes that our lives are inherently so bad that it is entirely rational if we want to die.”
― Alice Wong, Disability Visibility: First-Person Stories from the Twenty-first Century

“What worries me most about the proposals for legalized assisted suicide is their veneer of beneficence—the medical determination that for a given individual, suicide is reasonable or right. It is not about autonomy but about nondisabled people telling us what’s good for us. In the discussion that follows, I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality—dependence, institutional confinement, being a burden—are entirely curable.”
― Alice Wong, Disability Visibility: First-Person Stories from the Twenty-first Century