When Your Illness Has a History: Medical Gaslighting, Invisible Illness, and Why You're Not Imagining It

 

A conversation with Emily Mendenhall PhD, medical anthropologist and author of Invisible Illness: A History from Hysteria to Long COVID

If you've ever left a doctor's office feeling more confused, more dismissed, or more hopeless than when you walked in, this one is for you.

I sat down with Emily Mendenhall, a Guggenheim Fellow, professor at Georgetown University, and medical anthropologist who has spent two decades studying how trauma, culture, and chronic illness collide. Her latest book, Invisible Illness: A History from Hysteria to Long COVID, is one of those reads that will probably have you feeling simultaneously furious and finally understood.

We talked about the long history behind medical gaslighting, why so many patients are still being dismissed today, and a concept called structural silencing — which I think might be the most important framework I've encountered for understanding why this keeps happening.

It's Not New. It's History.

One of the things that hit me hardest in this conversation was the reminder that none of this is new. The dismissal of women's pain, the labeling of unexplained symptoms as "hysterical" or "emotional" — this goes back centuries. Literally. Emily traces it all the way back to Egyptian scrolls that described women's illness as a problem of the womb.

The term hysteria has been retired, but the pattern is still very much alive.

Today it shows up as:

  • Being told your labs are normal so there's nothing wrong

  • Getting a referral to therapy framed as "this is all in your head"

  • Spending years chasing a diagnosis that doctors say doesn't exist

  • Being told your symptoms are due to your weight, your hormones, your anxiety

Emily made a really important point about MS that stuck with me: once plaques in the brain became identifiable, the entire experience of having MS shifted. Patients were believed. Their condition became “real,” as if it wasn’t before the “proof” arrived. But for conditions where there isn't a clear, in-clinic biological marker, people are left in diagnostic limbo, often spending thousands of dollars out of pocket just to verify something their bodies have been telling them for years.

Illustrated silhouette of a woman's head in dark blue with pink speech bubbles containing question marks floating above, representing unanswered questions and the experience of being dismissed or unheard.

The Concept of Structural Silencing

Structural silencing, as Emily describes it, is not just about individual doctors being dismissive. It's a layered, systemic problem:

  • Time constraints: Clinicians are often seeing 30-40 (sometimes more!) patients a day. They don't have time to sit with complexity.

  • Training gaps: Most doctors have little to no education on complex chronic conditions, especially how they present in women, and especially when there are multiple illnesses effecting multiple body systems

  • Cultural disbelief: There's a deep, embedded cultural tendency not to believe women's pain, especially when it doesn't show up on a test.

It's not just structural inequality. It's structural silence. The system fails people with complex chronic illness every day, and it actively mutes them.

And for Black women, that silence is amplified. Emily was clear that anti-Blackness in medicine runs deep, and that marginalized identities add to the experience of dismissal and compound it in ways that are both measurable and devastating.

Why People Cling to a Biological Answer (And Why That Makes Complete Sense)

There was a moment in our conversation where Emily talked about the backlash she's received for not taking an explicitly biological stance in her book. People with ME/CFS and long COVID have been frustrated, even angry.

And honestly? I get it.

When you've been told over and over again that your symptoms are psychosomatic, emotional, or just completely made up, the biological answer feels like salvation. It feels like proof. It feels like finally being believed.

Emily said it really well: these patients aren't wrong to want that answer. They're suffering, and they deserve research urgency, not more ambiguity. The frustration is the completely predictable result of being gaslit for years by the very systems meant to help you.

But here's the complexity she introduces: chronic illness, especially conditions like long COVID and ME/CFS, is not one thing. It's a constellation. Many people she interviewed had a primary diagnosis and fibromyalgia, Sjögren's, EDS, MCAS — layered conditions that can't be reduced to a single biological root cause or fix.

She uses the concept of thresholds to explain why two people with similar genetics can have completely different outcomes. It's the tipping point — the accumulation of viruses, environmental exposures, trauma, stress — that transforms vulnerability into illness.

Our bodies are systems, not machines. And medicine, built around fixing one part at a time, was never designed with that in mind.

Class, Access, and the Brutal Math of Chronic Illness

Getting better — or even getting believed — is often a class issue. Who has the resources to:

  • See specialist after specialist

  • Pay out of pocket for testing insurance won't cover

  • Take unpaid time off to attend appointments

  • Access quality mental health support alongside medical care

Emily talked about the book Crowded Out, which looks at GoFundMe as a reflection of our broken healthcare system. The people most likely to raise significant funds are the ones who already have financial and social networks to draw from. The people who need it most are often the least likely to get it.

She also spoke about a woman she interviewed who was living with her father, unable to work due to cognitive loss from her illness, being told by a lawyer that she'd have a better chance at disability benefits if she were homeless.

That is not a failure of one person, but years of bias and outright prejudice making its way into the oppression of people who are sick.

So What Does Therapy Have to Do With Any of This?

A lot, actually… and not in the way you might think.

When doctors hand you a therapy referral after dismissing your symptoms, it reads as: this is in your head, go deal with it. I started this podcast four years ago in part because of that exact framing. Because therapy can be an incredibly powerful tool for people with chronic illness — but not because it's going to cure you. Because living with chronic illness is genuinely hard, and you deserve support while you do it.

Emily said something that really landed: people who have "recovered" from long COVID often aren't back to their old baseline. They're at a new baseline. A different life. And navigating that shift — the grief, the identity loss, the social reconfiguration — that's exactly the work therapy can hold.

It's not about fixing the illness. It's about not having to carry it alone.

What You Can Do With This

Emily's book isn't a how-to guide, and this episode isn't a protocol. But there are things worth sitting with:

  • Your experience has a history. What's happening to you is not random or personal. It's part of a long pattern that researchers are finally documenting.

  • Advocacy starts local. Emily and I discussed watching local politics closely — Medicaid expansion, local representation, community organizing. The big picture changes when the small picture shifts.

  • Trusted sources matter more than ever. We're in a moment where science is being actively weaponized. Finding people and spaces that communicate evidence clearly and honestly is a form of communal protection.

And if you've ever felt like the medical system wasn't built for you — you weren't wrong. But you also aren't without options, and you aren't alone.


Disclaimer: Everything we discuss here is just meant to be general education and information. It's not intended as personal mental health or medical advice. If you have any questions related to your unique circumstances, please contact a licensed therapist or medical professional in your state of residence.

Destiny Davis, LPC CRC, is solely responsible for the content of this article. The views expressed herein may or may not necessarily reflect the opinions of the guest.

The content in this blog post comes directly from a real, human interview between Destiny and her guest on The Chronic Illness Therapist Podcast. This written version was formatted using AI. Listen to the full episode to hear the actual conversation.


Listen to my full conversation with Emily Mendenhall on Ep 125: When Your Illness Has a History: Medical Gaslighting, Invisible Illness, and Why You're Not Imagining It

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Listen to Emily’s interview with me, Destiny Davis, on Ep 125: When Your Illness Has a History: Medical Gaslighting, Invisible Illness, and Why You're Not Imagining It

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Emily Mendenhall PhD is a medical anthropologist, Guggenheim Fellow, and Professor in the School of Foreign Service at Georgetown University. She has spent over two decades studying how trauma, culture, and chronic illness intersect — with research spanning the US, India, Kenya, and South Africa. She is the author of six books, including Rethinking Diabetes, Unmasked, and her latest, Invisible Illness: A History from Hysteria to Long COVID. She is also Editor-in-Chief of Science Politics and has written for Scientific American, Vox, and Psychology Today.

Emily wrote Invisible Illness to tell the story of complex chronic illness as one with a long, tangled history — and to demystify the misogyny in medicine that has long dismissed, ignored, and belittled women's symptoms and experiences. One of the through lines of her work is that no one's illness journey is the same, and that living with a chronic condition is complicated not just because of symptoms, but because of the people around you, the systems you navigate, and the financial and social costs that can make or break your ability to live a full life.

Connect with Emily:
Website
Instagram
Publication


Meet Destiny - The host of The Chronic Illness Therapist Podcast and a licensed mental health therapist in the states of Georgia and Florida. Destiny offers traditional 50-minute therapy sessions as well as therapy intensives and monthly online workshops for the chronic illness community.

Destiny Davis, LPC CRC, is solely responsible for the content of this article. The views expressed herein may or may not necessarily reflect the opinions of Dr. Heather Olivier.

Destiny Davis (formerly Winters)

Destiny is a Licensed Professional Counselor and chronic illness educator.

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