when the world assumes wellness
By 1932, the historian Henry E. Sigerist had noted that medicine’s systemizing impulses were “no longer concerned with man but with disease,” as Anderson and Mackay point out.
Meghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
our medical system, for all its extraordinary capabilities, is ill-equipped to handle the steep rise in this kind of chronic illness. That system is great at providing acute care and terrible at managing the complexities of long-term care.
Meghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
To the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity.
Meghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
When an Autistic person is not given resources or access to self-knowledge, and when they’re told their stigmatized traits are just signs that they’re a disruptive, overly sensitive, or annoying kid, they have no choice but to develop a neurotypical façade. Maintaining that neurotypical mask feels deeply inauthentic and it’s extremely exhausting to
... See moreI watched the lives of others with a sense of wistfulness. I missed the burn of Scotch in my throat, the loose joy of a dinner party where everyone got a little high on talk. I wanted to be sloppy and fun again. “How are you doing?” Gina asked one morning. “I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to
... See moreMeghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
"Would diagnosis matter so much in a world where all people and patients had more power – one where we did not have to constantly prove ourselves to employers, to medical professionals and to the benefits system to get our fundamental needs met? A system of social organisation in which healthcare and other healing processes centred informed
... See moreEveryone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. —Susan Sontag, Illness as Metaphor
Meghan O'Rourke • The Invisible Kingdom: Reimagining Chronic Illness
To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework.