when the world assumes wellness

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.

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.

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

the illness was not just my own; the silence around suffering was our society’s pathology.

something like autoimmune disease or long COVID falls into the third category of illness; it combines biology and biography in ways that are difficult for most of us (whether scientists or laypeople) to conceptualize.

"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 consent

To the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity.

our bodies may feel autonomous, but we all live in the nexus of radical interconnection. Our bodies are always in communication with other bodies: our immune system is responsive not only to collective health policies but also to the emotions and affects of others. The immune-dysregulated body, therefore, is an embodiment of our porousness to one a