Invisible Illness: A History, from Hysteria to Long COVID

Summary

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 complex chronic conditions 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 chronic diseases 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 for patients whose social identities and lived experiences may not align with dominant medical thought. Weaving together cultural history with intimate interviews, Invisible Illness upholds the experiences of those living with complex illness to expose the failures of the American healthcare system—and how we can do better.

"This book challenges us to address discrimination in clinical care for people with complex chronic conditions like long Covid, questioning why some are believed while others aren't—a persistent disparity in US healthcare."—Oni Blackstock, primary care and HIV physician and founder of Health Justice