Invisible Illness: A History, from Hysteria to Long Covid

It's done! Pub date this fall

Finishing a book is an incredible feeling. Mostly it feels like exhaustion and relief. I always go down rabbit holes of remembering specific conversations that made me think a certain way as I dot the final I’s and cross the final t’s. Invisible Illness: A History, form Hysteria to Long Covid was not only crafted through engaging with hundreds of people but also I received extensive critique from friends, colleagues, and students that have made it more impactful. I am eager now for it to arrive in the world—and I hope more than anything it helps people living with complex chronic health conditions to feel less alone.

Here I’ve included a short description of the book and early comments from colleagues who have reviewed the book. I can’t wait for you to read it!

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 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.

“As a sleuth and storyteller, Mendenhall looks behind the curtain at the little-know backstory of how the medical community has, for way too long, delegitimized a set of 'invisible' diseases that have wreaked havoc on untold thousands of lives over the decades, bringing us into the present with the public health catastrophe of Long Covid. It’s a call to arms to rethink how we approach infection-associated chronic illnesses.”--Wes Ely, MD, author of Every Deep-Drawn Breath and NIH-funded Long COVID physician-scientist

"Emily Mendenhall brings a poetic sensibility 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 U.S. healthcare."--Oni Blackstock, MD, MHS, 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, PhD, LCSW, Professor of Anthropology, Washington University in St. Louis

“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, PhD, Professor Emeritus and co-author of Disability Worlds

Finally: proceeds from the book are donated to To Be Well Fed, a hunger organization for children in the DC area.