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University of California Press

About the Book

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.

About the Author

Emily Mendenhall is Professor in the Walsh School of Foreign Service at Georgetown University, a Guggenheim Fellow, and contributor to Scientific American, Psychology Today, and Vox.

Reviews

"As a sleuth and storyteller, Emily Mendenhall looks behind the curtain at the little-known backstory of how the medical community has, for far too long, delegitimized 'invisible' diseases that have wreaked havoc on thousands of lives over decades, bringing us into the present with the public health catastrophe of long Covid. Invisible Illness is a call to arms to rethink how we approach infection-associated chronic illness."—Wes Ely, author of Every Deep-Drawn Breath: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine in the ICU
 
"Mendenhall brings a poetic sensibility to lifting up chronic illness. She stands at the nexus of science and democracy, showcasing how the disabled rally together to live lives of dignity."—Ryan Prior, author of The Long Haul: How Long Covid Survivors Are Revolutionizing Healthcare
 
"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
 
"Meticulously researched and exquisitely argued, Invisible Illness illuminates how biomedicine's struggle with ambiguity leaves suffering patients paying the price. Deeply compassionate and astutely incisive, Mendenhall's book is an outstanding contribution."—Rebecca J. Lester, author of Famished: Eating Disorders and Failed Care in America
 
"Mendenhall cuts a crystal-clear path through the thicket of diagnostic loose ends and symptom shifters surrounding complex chronic conditions to offer a gender-sensitive intersectional analysis of illnesses that are never invisible to the activists and allies who confront them."—Rayna Rapp, coauthor of Disability Worlds