Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

Dolphin

Dolphin

Senior Member (Voting Rights)
https://www.ucpress.edu/books/invisible-illness/hardcover

Invisible Illness
A History, from Hysteria to Long Covid
by Emily Mendenhall (Author)
HardcovereBook
Price: $28.95 / £25.00
Publication Date: Jan 2026
Edition: 1st Edition
Title Details:
Rights: World
Pages: 268
ISBN: 9780520421523
Trim Size: 6 x 9
Endowments:
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 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.

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 and NIH-funded long Covid physician-scientist

"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, 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, Professor of Anthropology at Washington University in St. Louis

"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
 
Dolphin said:
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.
Click to expand...
This seems to be disconnected from reality. Yes, every person will have a unique biology, but that doesn’t make diseases that are defined by their shared biology «unique» and «individual».
 
Turtle said:
Harming so many people, knowingly.
Click to expand...
They've put so much into the theory that MECFS is psychological that they can't/won't back down. Their entire careers and legacies rests upon us being malingerers. They're willing to harm us over and over again just to keep their reputations intact.
 
Last edited by a moderator:
Felis Catus said:
Long COVID Advocacy substack has a post by a guest writer, Dr Elke Hausmann (I don't know anything about them): https://longcovidadvocacy.substack.com/p/these-are-not-verifiable-conditions

Looks like Elke tried to write a balanced post and started with positives but ran out of them quickly.
Click to expand...
This does not look good:
She states that;
many clinicians find that this [depression] is a defining feature of ME/CFS (p.350),
Click to expand...
that studies into the effect of CBT (cognitive behavioural therapy) for CFS have shown
improving mood disorder was not the reason why CBT remains a moderately effective treatment for CFS (p.215),
Click to expand...
and that the PACE trial has not been redacted by The Lancet because:
the UK Medical Research Council and the Health Research Authority of the NHS determined that the trial was robust (p.230)
Click to expand...
and that
the widespread acceptance of the clinical recommendations that CBT and GET [graded exercise therapy] would help overcome chronic fatigue, even when patients experience post-exertional malaise intolerance (sic), is common but also changing and more nuanced. (Mendenhall, p.230-231).
Click to expand...
In addition to that, patients with ME will not be happy to see Wessely and Sharpe quoted neutrally, while in contrast patients are presented as emotional and threatening: ‘infuriated, frustrated, outraged’ (p.216-221), unthinkingly reproducing a trope that has been used to undermine the credibility of ME patients for many years.
Click to expand...
It looks like the author might have bitten over more than they could chew. ME/CFS is a topic ripe with misinformation and has experienced a narrative war for decades, so it’s understandable but unfortunate. I would not feel comfortable writing a book like this even if I had many healthy years to do it, because I would get too many things wrong.
 
The author Emily Mendenhall has today published more background information on Wessley's threats and more:

Bluesky Blowup
How the ME/CFS patient community is reading Invisible Illness


Quote:

The article was submitted and a lovely (but very junior) editor handled the article and sent it to Wessely himself. I received a 17 page retort from him where he self-identified himself as the reviewer. I must note that I never personally reached out to him in part because he was such a contentious actor throughout my patient interviews and I felt he had very extensively published his viewpoints in his own words already. However, I did interview some of his close colleagues and friends. Much of what I cited about him was based on his own words and things written about what happened in the 1990s and early 2000s. Some of the critiques, however, we from extensive discussions with ME activists.

While one reviewer loved the piece and suggested publication, the other one (Wessely) did not. He demanded it be rejected and threatened to sue the journal for defamation.

substack.com

Bluesky Blowup

How the ME/CFS patient community is reading Invisible Illness
substack.com substack.com
 
BrokenBeaktheBrave said:
"He threatened a law suit to the journal. I toned down the critiques that named him explicitly after consulting with my lawyer: it was very complicated and stressful honestly"
Click to expand...
This is so bizarre to read living in a free society, this concept is completely foreign to me, sounds like something straight out of a dystopian satire. Let him write his own damn book if he doesn't like what someone has written about him. I have no idea why people comply in advance like this, sending him an advance copy for him to critique.

It would actually be great if someone else could publish about it, including what was changed. This in itself is so symbolic of everything that's happened.

Edit: OK this is completely bizarre. The publisher gave him a veto? What in the hell is this clown show? It's an incredible display of censorship and cowardice from the publishers. It's so absurd trying to understand how someone like him can have so much sway. It's a good thing the author wrote about this, but wow do we need to know more. This is a core part of the whole story, far more compelling than whatever self-aggrandizing bullshit Wessely may have wrote to make himself look good.
 
Last edited:
I listened to this podcast a while ago interviewing the author. Don't remember all the details. It was interesting to listen to an anthropologist's point of view of the history of post viral and neglected illnesses, but dapping a bit too much into mind-body stuff for my liking. But for those of us who can't read a whole book I hope it's a good presentation of it:

The Afterlives of Viral Infection

As influenza cases reach a twenty-five year high, a look at the complicated history of long lasting post-viral conditions. Medical anthropologist Emily Mendenhall considers how the medical establishment has frequently ignored chronic but often invisible illnesses like long Covid and long flu, Chronic Fatigue Syndrome and Lyme disease.

kpfa.org

The Afterlives of Viral Infection | KPFA

As influenza cases reach a twenty-five year high, a look at the complicated history of long lasting post-viral conditions. Medical anthropologist Emily Mendenhall considers how the medical establishment has frequently ignored chronic but often invisible illnesses like long Covid and long flu...
kpfa.org kpfa.org
 
Fragile little snowflake, isn't he. He does have a history of threatening litigation against his critics.

17 pages? Sound like a bit of an emotional over reaction to me. Sort of thing that is sometimes held up as evidence of serious psychopathology when it comes from a desperate patient.

He'd better hope he doesn't get a serious dose of ME/CFS or LC. Won't last two weeks with that attitude.
 
You must log in or register to reply here.
Back
Top Bottom