A moving cultural history of disability—and a powerful call-to-action to change how our medical system and society supports those with complex chronic conditions
From lupus to Lyme, invisible illness is often dismissed by everyone but the sufferers. Why does the medical establishment continually insist that, when symptoms are hard to explain, they are probably just in your head?
Inspired by her work with long Covid patients, medical anthropologist Emily Mendenhall traces the story of contested conditions from hysteria to long Covid to show why both research and practice fail so many. Mendenhall points out disconnects between the reality of chronic disease—which typically involves multiple intersecting problems resulting in unique, individualized illness—and the assumptions of medical providers, who behave as though illnesses have uniform effects for everyone. And while invisible illnesses have historically been associated with white middle-class women, being believed that you are sick is even more difficult when you’re Black, trans, poor, young, disabled, or undocumented. Weaving together cultural history with intimate interviews, Invisible Illness lifts up the experiences of those living with complex illness to expose the failures of the American healthcare system—and how we can do better.
Funds generated from sales of this book are donated to To Be Well Fed, a hunger organization for children in the DC area.