The Butterfly Pavilion Podcast

Invisible Illness: An Interview with Author Emily Mendenhall

• Nikki Godwin • Season 2 • Episode 7

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This month we talk with Georgetown Professor and author of "Invisible Illness: A History, from Hysteria to Long Covid.," Emily Mendenhall.

"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?"

Emily takes a unique historical approach in her book while weaving in  a number of patient stories in an advocacy "tone." 

She interviewed over 150 patients (including me,) and chronic illness professionals for the book.

We address the early "Bluesky blow-up" where she took some "heat" for some of the passages in her book, historical context of disability and invisible illnesses, the unavoidable "politics," The Anthony Fauci Senate hearing, and of course a recurring segment on the show; "Movie Quotes."

It was a thrill to catch up with her again as I'd worked with her over the last 2-3 years on my story also presented in the book.

A couple of notes on the episode, I refer to Covid.org but should have been Covid.Gov. Should make more sense with the right link. While the Wired Magazine article; "The Painful Truth About Long Covid," by Alan Levinovitz, We did not have the time to dive deep into this; the link to my Substack post on the topic referenced on the show can be found HERE.

https://substack.com/@seekingbostonmarathon/p-200315063

The Butterfly Pavilion Podcast follows the journey of a father with metastasized stage IV prostate cancer and his daughter. Wanting to capture stories and maximize his time with his daughter was the genesis of the show. 

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SPEAKER_01

Welcome to this month's episode of the Butterfly Pavilion Podcast. This month we feature anthropologist and professor Georgetown Emily Mendetal, an author of Invisible Film History from Hysteria to Long COVID. Remember to follow us on social media on Instagram and TikTok at ButterflyPavilion Pod, where you can get more freaking updates on my stage for cancer journey and finding the light and darkness. A quick episode uh correction. We talk about covet.org, it's actually covet.gov. It will make a lot more sense to get the instantity and jocularity. With that, please enjoy the episode. Welcome to the Butterfly Pavilion Podcast. And I'm super excited this week. We don't have Nikki. I'm not excited about that, but I am excited because we've got Emily Mendenhall. Emily, I met um, gosh, what, two, three years ago, as she was beginning to write her book, uh, which is um Invisible Illness, available on Amazon, uh, wherever you might get your books. Um, so this is her second book. Emily's a professor at Georgetown and um author of Invisible Illness, a history uh from hysteria to long covet. Uh actually, your second book, your your previous book was was Unmasked. Um I've known you for a few years. You want to say a quick hello and anything to add to that uh that uh short bio that I threw out there?

SPEAKER_04

Oh, sure. Um I'm a medical anthropologist, so I like to get into the squishy gray areas and try to think across disciplines and how people have thought and lived um with illness. Um this is actually like my 11th book. It's just my second trade book because no one reads your academic work, really.

SPEAKER_02

Okay.

SPEAKER_04

Um so I've written a lot, actually, I have a prehistory to writing about COVID. No, it's so it's good. Um, I have um actually written a lot about trauma and diabetes and women, I spent two decades traveling around the world and working with women living with diabetes, um, mostly low-income women, and looking at how stress, trauma, and marginalization actually makes you sicker in part because a lot of, you know, and this is something I do talk about in um part of invisible illness, is that, you know, people of color, um people who are lower income are less likely to go seek care um until they're very, very sick, which makes their illness worse and not always and even more invisible in some ways. Um, and I think taking seriously race and class, ethnicity, access to insurance, and all of that complexity is such a crucial part of living with an invisible illness, which for you know, maybe diabetes for people for a really long time. Because when I talk about invisible illness, it's not just about signs and symptoms, but it's really about access to health care and living well with an illness. Um, so yeah.

SPEAKER_01

Right. Well, that that's a that's a good tee up for question number six. Um because I I we are gonna we are gonna touch on the kind of the socioeconomic because that that is something that you and I talked about um uh in the book. The book came out what January, February? January, yeah. Yeah. Um, so how has a year gone for you with this book? How has it been accepted? How how has the year gone for you as as author of invisible illness?

SPEAKER_04

Well, Ty, you probably know this. Um, you know, overall, it's been awesome. It's been really well received broadly. I wrote it very clearly so it would engage patients and physicians. I think a lot of things written just for patients are completely discarded by physicians, and things written for physicians are discarded by patients. So I was really trying to walk a fine line. Um, I didn't talk about severe MECFS or really severe bedbound cases of long COVID on purpose because I feel like those conditions are very specific and unique and particular and deserve a lot of attention. And some of those patient communities really attacked the book because they didn't think they were represented well enough. And some of the pieces of the book they didn't agree with. Um, so that was kind of stressful. But, you know, I think people are suffering in such a deep way that um that, you know, these conversations really matter. And anything that elevates patient voices and an attention to people's needs and concerns is important. So that was an interesting experience. But overall, it's been great. Actually, I was just in Japan giving a talk on invisible illness, and some um actually scholars are were so excited about it, they're gonna translate it into Japanese because nothing's been written on yeah, on long COVID. And you know, invisible illness is a very American Eurocentric story. Um and I think it needs to be seen as that because part of it is cultural history, which is extraordinarily different in other countries. Um, I I interview people around the world, actually. A lot of these stories didn't get into the book, but um, you know, I interviewed my I've lived in India and South Africa and Kenya, and I interviewed, you know, my colleagues and friends from those countries and had a baby in London. And I had a baby in London, yeah. Um we spent, we live, my husband and I lived out of backpacks for quite a while before we had babies and kind of needed a job or a stable job um rather than living on contract to contract or, you know, postdoc money. But um these these kind of narratives were like, you know, we don't have time for long COVID. Like long COVID, there are so many urgent post-viral conditions. The ways in which we're managing these, like this linguistic kind of ad advocacy, doesn't even get into the health system. And I think those stories are really interesting and really different. But invisible illness particularly is an American story. Um, obviously, and if you wrote this book from a French perspective, which also has a really robust history in politics as does UK, these three books would also be different. So I think it's important to think about it in that way too, as a cultural history.

SPEAKER_01

Right, right. Well, um, I'm hoping you've you're getting your flowers. I I think uh it might be the phrase for for the book. Um you you also teed up uh one of my other questions because I did want to like address that head on um in terms of some of the feedback. Um but I I before we even jump to that, I I would I would encourage anyone to to read the book before you uh before you uh you know perhaps jump on um a line in a book or a quote in the book uh that you might feel um doesn't doesn't suit you. Um so you are you did fit help fill out the bingo card because you are the first anthropologist on the podcast. Uh that's that's tough to say. I I had a uh um a 615 check-in for a imaging uh this morning. Um so I'm hoping I'm I'm cognitive and alert today. Um because we've been we've been up and going uh um uh for a while here. But so you're the our first anthropologist, and it's a very unique uh approach you take in the book, in that the first half is history. Um and you know, uh I maybe you can explain kind of why you took that approach. You talk about hysteria. Some people may not know the derivation of hysterical, because I'm assuming it comes from hysteria and and it comes from a term you talk about in the book. We also talk about Spanish flu, long flu, which I didn't know existed until I had long COVID because I was talking online with somebody about, you know, uh, well, it isn't the flu, and they corrected me as that no, there are people that can actually have long-term viral persistence uh from even the flu. But you talk about all of these historical contexts, so maybe you can explain why you took that approach and how it dovetails into how we're addressing you know long COVID today.

SPEAKER_04

Well, you know, after studying chronic illness for you know two decades, I ended up um during COVID. I also work in a school of international affairs, so I was deep into the global health security talk. And, you know, one of my friends is uh who I write about in unmasked in chapter one, Rebecca Katz, is you know, one of the leading experts on global health security. So I dug into the COVID politics, and it you can't escape from it. I mean, even it's it lives on. Even Fauci being interviewed yesterday, which was such an attack.

SPEAKER_01

And anyways, for I felt sorry for the poor, I felt sorry for the poor guy, honestly.

SPEAKER_04

I mean, he he is a and I know not everyone agrees, but I think he's a national hero. And the ways that he has managed medicine and the politics. I mean, just looking at how people receive my books, like the politics of being a scientist and being a loving partner to the patient community, and not everyone would agree that he was all the time, but he is a I know him actually personally. He's a professor at Georgetown as well, and he is like a very good man.

SPEAKER_01

So, anyway, so the politics seems like a decent man seems like a good good way to describe him. Absolutely. As I say often online, he is not a Bond villain, although many, many try and paint him as such.

SPEAKER_04

Yeah, I just, anyways, that's a that's a difficult um, you know, pol health politics are so crazy. And I'll tell you about my new publication, Science Politics at the end. Um, but so I got into this because I was studying, I was writing Unmasked, um, because I in my hometown, I like realized how powerful COVID denialism was and how embedded it was with whiteness and kind of um cultural um imagination of who we are and what we can do and you know, of body and mind and and culture. And so I just I couldn't help writing this book. I actually wrote Unmasked in like six weeks. It was like in my heart mind, you know, and it was like a loving critique of where I grew up.

SPEAKER_01

Words just flowed on flowed onto the paper.

SPEAKER_04

It just flew out onto the screen. I actually, yeah, it just came the book came out very quickly in part because it just felt like such an important story. And as I was finishing Unmasked, I had a student who got really sick from lung COVID. And um, you know, he was gonna write a thesis with me. And I was like, well, why don't you not do that? And why don't you just start journaling, do autoethnography? So we started journaling every day and we were in constant conversation. And he, Ken Kaplan, we've written in Scientific American together about brain fog. We wrote a piece on the work we ended up doing together in social science and medicine. Um, and it was a really great introduction to long COVID. And while I was thinking and starting to read a lot about it, um, I started kind of putting together a project of my own. And then I actually got really sick from when I got COVID a year later. Um, and not like not like him. I it's actually, I actually don't even say that I have long COVID in part because someone like you, Ty, like I couldn't even imagine my illness is was the same. And I mean, still, if I get sick, it takes me like two months to get back running or being active, but that feels really manageable. It also feels very midlife. Who knows what it is? But um there has been a significant change. But thinking about so many people with such severe conditions, they feel like such different categories. And actually thinking about that heterogeneity of what the illness is, I think makes it so tragically difficult to diagnose and understand. Um, and that's actually was one of the reasons behind thresholds theory, which you know, some patients really don't like, other people really love. Um, my research and my theory and my work came from, you know, 150 interviews with patients and providers and academics and you know, people um all over the sphere and also deep reading of memoir. You know, one of the great things about working.

SPEAKER_01

Well, I should point out, Emily, if I if I may interrupt, and you you uh tell those stories throughout the book. I always say I I want uh empathy, not sympathy. Uh so I think it's written from an uh you know, from an empathy standpoint of people's real stories and struggles. Um, and those are those are sprinkled throughout. So I I think you definitely come from a patient advocacy perspective.

SPEAKER_04

Yeah.

SPEAKER_01

So I wanted to thank you for that.

SPEAKER_04

Thank you, Ty. You know, the book was written in that in that kind of way of thinking, much more, you know, it telling stories is an anthropological craft, but the book was, I saw it more as an advocacy book. Um, and also kind of a book that people can read and feel seen through. Um, and that actually I've gotten so many inner uh so many letters from people who have felt that way, which has been incredible. But I'm gonna I am answering your question. I'm just being a little circuitous.

SPEAKER_01

Yeah, no, well, no, this is this is great. This is what it's all about. Um, the historical perspective, um uh, and and we do tend to popcorn around on on this show, so that's all goodness.

SPEAKER_02

Yeah.

SPEAKER_01

Um, what can we learn? Or what you know, uh perhaps that's uh you know, history repeats itself, um, but maybe you can explain you know why the approach of half the book is is is on history, but you sprinkle in modern day stories.

SPEAKER_04

Yeah, so I'm actually I'm getting there because as I experienced my own illness and I was thinking about long COVID, you know, I'm a nerd. I feel like you and I are very similar in the way we read, we do research, we dig in, we look at it from all sides. And I just started reading and reading and reading. And so basically, what came forward to me was that this is such an old story. And it's not only medical misogyny um or kind of ableism, but you know, this is a deeply cultural story. Um, and that's why I started with hysteria. And I think about like how far back dismissing women or people with chronic illness that is not inherently easy to diagnose or see has so long been part of um biomedicine. And talking about medicine in that way and understanding how we are in the place that we're with medicine and patients being completely dismissed and seeing how far back it goes, um, I thought was an important story to tell because sometimes when people talk about long COVID, they were talking about it as this new condition and this new experience. But what I was so struck by while I was reading and thinking about how far back it goes is how instructive it can be to think about where this is coming from, because you can't change something overnight that's like centuries old. But I think you can address it by deeply understanding it. And that was kind of my intention. How were these constructs like chronic fatigue syndrome? How were these constructs created? And how is it a cultural category that is American, distinctly American, and it doesn't exist other places?

SPEAKER_01

So um in a and I found it fascinating that was it, was it the um, and I'll probably hack the name of this, is it Paleolitis, uh, where hysteria uh would became a thing? Oh yeah.

SPEAKER_04

Well, it was so yeah. So I talk, I tell that history in a few different ways. The cultural construction of hysteria, of course, um, goes way back um centuries and centuries and centuries. And then kind of the work with Charco and Freud, it it um became more popularized and reimagined, and it kind of detached from biological narratives or more neurological narratives and more became more psycho-social and became more weaponized against women at that moment. Um, but and then, you know, this emergence of neurasthenia and these cultural frames emerged and kind of evolved with culture. But um, specifically, you're talking about the Royal Free outbreak, I think, in 1954 in the UK.

SPEAKER_03

Yes. Yeah.

SPEAKER_04

And so that was a time when the idea of postviral syndromes became much more mainstream and more visible. And that also, there was also a cultural narrative of hysteria around that outbreak, but it was also a time when doctors and patients and people working in the clinic were like, no, this is clearly viral. These prolonged stories and patients who are disabled in this extraordinary way comes back discreetly to this outbreak. And that was a very powerful moment when people started to think about postviral syndromes in a new way. And this was well beyond the great influenza, which, you know, many historians argue is a footnote in history because of World War I. Um, but it is this backdrop.

SPEAKER_01

If you're not going to be able to do that, yeah, as you point out, more troops, more troops were actually died from that than from battle.

SPEAKER_04

Yeah. And I think that I think it's extraordinary to also think well beyond Europe, well beyond the United States, that even in Tanzania, around a bus route, this whole community was affected by flu. And they were so disabled they could not plant the next year. So there's even a famine, the famine of the corns, that was linked to long flu. And um, having these kinds of broad global narratives and recognition of how these viruses work within the body and within communities differently is is really important for understanding the breadth and experience of these viruses in people.

SPEAKER_01

Yeah, it's uh um I remember um and and you know my story, so I I got sick so early in the first quarter of 2020, and I chased, you know, I didn't we didn't know what long COVID was until uh Perigo coined the term. Um so I was doing all the traditional medicine uh tests, and you talk about that extensively in the book, where you're you're you're chasing all these tests to try and figure out what's wrong. But it was finally at Mayo Clinic in Rochester where they actually had a uh Dr. Greg Vinishka said that this is not new. Um, so post-viral illness, and of course, even that um people uh don't like the term post-viral. They uh many prefer viral persistence, but you know, he said, you know, post-acute sequality, you know, this is not new. Uh and you talk about Lyme, you talk, so it's a bit of a loaded question, but we we have seen this story before, right?

SPEAKER_04

Yeah, yeah, and I think that's the point of the book. And I think that's why when the ME community and M E L Long COVID community focus so much on a telling of parts of the book, uh it's not about ME, it's not about long COVID, it's not about Lyme, it's about the collective dismissal by medicine of these conditions that are very different, but similarly experienced in the medical system. And so I think that what the advocacy of the book itself is to medicine and speaking specifically to doctors, because, and actually I have a I have a cousin who is a general, he's an internist, and he is he's like, you know, I really struggle with patients with complex chronic conditions that are hard to diagnose. So now I just have 20 copies of my book in your office, and I give them a copy and I say, let's read this together. And I think that's amazing. Um, but you know, I think just recognizing that you are not alone in these conditions, and if you don't have a diagnosis, and the fact that very few people have one diagnosis, and that's something I learned so early on in my work with diabetes, and something that was clear as I started doing my interviews is people have a collection of diagnoses, and that's one of the reasons why long COVID itself is such a heterogeneous concept and experience because people have these clusters of diagnoses that I mean, and your cancer diagnosis, for example, is fundamentally shifted your incredible or your unique long COVID experience itself through medicine, physically, emotionally. I mean, that's a great example. And I think you have been so generous with your story. And I just want to thank you for that.

SPEAKER_01

Well, well, thank you. Um and I think it's uh what is it, chapter seven. Um I'm I uh was excited to see, well, excited. Yeah, it's hard to say I'm excited. I'm excited to see that I was in your book to tell my you know tragic tale, but uh I appreciate that because I think you know that has been my approach of uh you know awareness and advocacy, and you've got a whole chapter on on advocacy. So how is it that we're six years uh six and a half years into this thing called COVID and long COVID, and there's still gaslighting going on? Um I I I still have to explain to people what long COVID is. Um it it's less rare to run into medical professionals, although I think three years in I I went to the ER and you know the ER doctor had no idea what long COVID was. Um perhaps a loaded question, but why why are we still where we're at six years in and no one knows what long COVID is, and and they it's hard to wrap their their minds around that.

SPEAKER_04

I think again, this is why the book telling the book from a historical perspective is so important.

SPEAKER_01

Perhaps because they all haven't read your book.

SPEAKER_04

I don't know. You get it. That's um, yeah, I would love for more people to take it seriously and engage. I mean, it's been, I mean, yeah, I think it has actually been just wonderful to get so many responses of people who've been like you explained so much to me. Um, but what I would say is the reason why the historical narrative matters so much, and starting with hysteria, and many people don't know about the maybe they've heard of hysteria, but not neurasthenia, and how neurosthenia was culturally crafted, specifically within medicine and society, through neurology, really, to Think through and marginalize, but also dismiss certain categories of illness. And I think that cultural production in medicine lives on. And if you see, if you even think about how the narrative of chronic fatigue syndrome, of the construction of that really misogynist and erroneous category was created itself in the US through kind of this cultural dismissal of even the CDC, right? Specifically, it's embedded in the cultural medicine to dismiss and not believe, in part because of the specific, you know, the specific focus on the body as a machine. And by not understanding the complexities of the body and of the multiple systems that engage in such a deep level, biomedicine dismisses the reality of what long COVID is and what it does. And I think that is a huge challenge. And I think that's why people are like, I don't know what long COVID is. It's not that they haven't heard of it. They're just dismissing. They're dismissing the category and they're dismissing the need to understand complexity.

SPEAKER_01

Yeah, and I think we'll touch on some of the other uh drivers for that. But um, you know, gaslighting is is alive and well, and yeah, um, it's crazy. But you you you probably don't need to go much further than um I don't know how I discovered this. I saw it somewhere online. Uh covid.org, I think is the is the link. And it's a part of the CDC website, but it's a it's a one and a half page propaganda of the China virus and the origins of COVID. And of course, at the very bottom, it's got the the me or the photo the famous photo of um Fauci with a hand to his head.

SPEAKER_02

Yeah.

SPEAKER_01

And um it's it's just crazy. Now yeah, uh I believe it's covet.org. Um I'll I'll send you the link. I I I looped it into my um I I don't do a lot of uh uh Substack, but I've got a kind of I've kind of shifting a bit from my blog to also you know putting stuff out on Substack, but it it's also weaved into everything's blamed on the vaccine. Um so you run into this where it's not long COVID, it's it's it's long vax, or and and uh yeah, I get I get I get tired of of that accusation.

SPEAKER_04

Well, and I also wonder if covet.org, if it is managed by the CDC, is kind of was like kind of organized to um this try I mean because the whole hearing yesterday with Fauci was about the origins of COVID. So it um I wonder if there's any link to that because the implications of that hearing what were really dire um or intended to be.

SPEAKER_01

Oh yeah, yeah. Total total Bond villain stuff. Um so the you mentioned in in the intro, and and I felt for you, because there was the whole um blue sky blow-up, and without naming names, I think there was an excerpt of your book that that would that went out online, and you know, people started to read snippets of lines of the book. And you know, I I also was like, hey, did I get this wrong? Because that's not the woman I I I met and and uh interviewed with. And uh I think uh again, I would encourage people to read the entire book, but I I ran into this in a in this discussion with our our interview with David Petrino um because he he had something very similar. He put out his playbook, and there was a section on graded exercise therapy in his playbook, and the the internet just went mad. Um, and uh I think in defense the people with long COVID, they they don't have answers, they've been sick a long time. Um I think you get some maybe out of character, um, but um perhaps you could explain you know how the book was misinterpreted. I think there was uh psychology, you know, people thought it was a psychological, yeah. Of the of the of the of long COVID, um FND, which you you clearly point out in in throughout the book and in the end of the book that you the last thing you want is to have that in your medical chart, yeah. Um because it's it's a very bad thing. Um and then graded exercise therapy, um, which you also talk about a lot in the book and the pace trial, etc. So maybe you could help explain yeah, what happened with that? Yeah, what happened, and and you know, did people just not just read you know a couple lines out of the book, or you know, how did it how did it get so sideways? Uh well on the one hand I'm doing this not to attack you. I I clearly I don't feel attacked.

SPEAKER_04

I I you know I don't even feel like when I was actually literally getting attacked, um, I didn't I wasn't angry because why would you be angry at people who are really suffering and tried to make sense of their own experience? So I was trying to be really loving and engage in a respectful way. That was like my intention the whole time. Okay, we disagree. You know, I did all of this research and you and I disagree. It's okay. You know, we don't have to agree. Um, but I do feel like some of the very online attacks specifically, and some of the one-liners are pulled. When you tell a history book, every line isn't what I believe. I was telling a history. And some of that history, like actually, you know, one of the there's a paragraph about the pace trial that I talk about, and this was people were very angry about this one paragraph that I talk about how the PACE trial investigators went back and re-ran the trials and reported that they were robust, which they did. And I wasn't saying they were robust, but people were like, She says the pace trials were robust. And like, no, I was reporting what the scientists said and what they did. And this, the Lancet has still not retracted that paper. So and I had to tell that because if I only told that side of the story of the patient advocacy side, doctors would also not take the book seriously. And I think even though the book is 98% patient advocacy, there are things like that paragraph that tell the scientific story or the physician part of the story in part because they need to take it seriously. They need to see themselves in it to read and engage with the scholarship. And I think because people are so divided and not able to have conversations, the part the divisions are getting worse and patients are more isolated and they're not taken seriously because they are so worked up because of this long history of marginalization. They have compl they are completely have a right to be worked up, and I totally understand where this and some of the attacks on the New Wired article, which I see why people are upset if you think in this certain way, but it could be handled a little bit differently, I think, if we want dialogue. Um and so I don't know, I think that some a lot, especially some things about FND, like you mentioned, were taken out of context. And like I saw these critiques of the book, and I'm like, that, I don't know what you're talking about. Like, that is not what I say, that is not what I argue. But if you take it a historical narrative out of context without the larger critique, I totally understand how people were seeing that. Um and you know what? Once you put something into the world, it lives and people breathe into it and interpret it their own ways. And you have to be secure enough in your own argument that you did your own research to say, okay, well, this is gonna live and have its own life after publication. And you have to accept that. Um, and you know, everyone has their own right to their own view and to use things in the ways that they need to. And um have to say, online communities also people are trying to generate their own power and legitimacy. And so weaponizing my book also was a form in which people were creating their own legitimacy and arguments, even if their arguments I agree with, you know, largely agree with. Um, but that's okay. That happens so often. This is just a human thing that we do.

SPEAKER_01

Right, right. Yeah, the um um I talk about it quite a bit because there's there's um of those. I mean, I I tried uh CBT or cognitive behavioral therapy. Um, I think because it it might have been recommended in my chart in uh one of my appointments at Mayo. Um, and the insurance company saw that and they're like, oh, you you need to go you know do the CBT. And I actually went to it with it with an open mind, but it uh honestly didn't move the needle. And I I know you know my my exhaustive uh search for answers. You know, I did uh brain retraining, I did all kinds of things. Um, you know, but the cognitive behavioral therapy, it just didn't seem to move the needle for me. And it also, yeah, I am one of those patients where I feel, you know, I've got such vast, you know, uh physiological damage to my body. Um, you know, I could see where patients do get defensive, and you don't do this in your book, but I'm saying when when people get really riled up when you when when someone suggests it's all in your head.

SPEAKER_04

Oh, and I basically say a million times, it's not in your head. You know, like that's the point of the book. You know, it's this is not in your head. This is a real biological thing that's happening. You know, the CBT thing, Ty, I think, I mean, I also have this perspective. Like, all of my kids have been my two kids have been in therapy. My husband and I do a ton of therapy, like on and off when you need it. Like, I personally think I'm a big fan of therapy. I love therapy. Oh my God, if I go to Ford therapy all the time, I would go twice a week. It's amazing. But um, and I think really healthy people can engage in that. But I also and people who are really suffering. But what I find with anyone who has chronic illness, for example, and there's a lot of research that especially the work on diabetes that I have known for years, within the first one month to six months of any diagnosis of a severe condition, when you're physically deeply suffering, people go through this identity transformation. And, you know, the per in anthropology, we might say this like perception or um transition to understanding yourself in a sick role, which is a social role, but that can be extraordinarily distressing. And living and having progressive symptoms can be distressing. And in my view, therapy can be helpful for those distressing social and emotional experiences you're living with because of the illness. It's not going to fix the viral impact on your body. But we are not just physical beings. We are social and emotional, and you know, we deal with all this structural stuff that's the backdrop of a lot of people suffering, um, especially in the US, which is like such a problematic health system. So I mean, yeah.

SPEAKER_01

Yeah, I've I've used it. Uh so we're we're kind of polar opposites in that you take a very scholastic view of things, and I quite often take a uh a sophomoric approach to things. I I love uh and I've I've used this in some of my videos and and reposts, uh the the old SNL Saturday Night Life uh skit, uh Theodoric of York Medieval Barber. And um I equate that to some of uh the graded exercise therapy uh that I went through and and and uh I as you know I I was a I was an avid marathon runner and triathlete, and um I knew a lot about recovery from a race and ramping myself up, and I can't go out go out and run 20 miles the first weekend after I ran a marathon. So I felt like I knew my my body was fairly in tune with my body. Um but I think through Mayo and and also through a local uh hospital, um I had an open mind, and and I'm like, I well, maybe I just need to like start walking on a treadmill, you know, for two minutes. And yeah, um, I think the last one I went through uh was again at a uh a uh certainly nationally known uh lung hospital, and I went through a PT program of graded exercise therapy, and and I think it was like by the fourth or fifth session that the the physical therapist she actually says, Hey, I think we need to stop this. Yeah, because she saw she saw that my body was going backwards and and not forwards. And these weren't these weren't astronomical leaps, you know, especially for somebody that used to run very fast. Um so yeah, I think they're lightning rod topics. Um, so if you like pull out a sentence of your book, um, you know, and as you pointed out, you you cover it from a historical perspective. And um, I I do believe you need to read the whole book because I think by the time you read through all the patient stories, yeah, um, you're clearly coming at it from that, you know, um patient perspective and and of advocacy.

SPEAKER_04

You know, and when you speak to people who are part of ME Action or solve ME, who I have extensively talked to, it's important to recognize that graded exercise therapy is extremely dangerous for some people. And you were one of those people. On the other hand, ME or viruses that live on in your body affect people very differently. I know several people who are.

SPEAKER_01

Oh, absolutely.

SPEAKER_04

Yeah, no, I know you're not saying that, but I'm just maybe.

SPEAKER_01

Yeah, no, I the point I was gonna make, and then you know, please continue. That's part of the problem, is if if you have something like prostate cancer, it's a very prescriptive disease and prescriptive treatment, although it's very fluid, as we talked about before we we started recording about you know potential you know new treatments, but that's part of the nature of the problem, is there is no there's very few patients that look similar. We have overlap of a lot of symptoms, but we are all very much different. You talk about that in the book.

SPEAKER_04

Yeah, yeah, and and that's a that's a point. Like um, there is a one doctor I um interviewed in the book who is a big long COVID advocate and has recovered and is a long distance runner. Um, actually, my husband says he got post-um-training syndrome or over-training syndrome, but all of his symptoms were long COVID and it was after a COVID infection. You know, it's a good example of people who maybe call something some one name, but maybe it is actually affected by their persistence COVID in the body. I have a a few people, a couple people I know of, one person I know very well, um, but I know this is something that's happened is people with heart conditions have gone into AFib. So they've had to figure out after having a COVID infection and other viral infections. So persistent viruses, not just SARS-CoV-2, can actually cause your heart, if you have an under, you know, uh underlying vulnerability, can cause these extraordinary issue issues like cardiac arrest or AFib. So recognizing the heterogeneity again of the condition is important. And I think that's I think that's important because the the pace stuff and the CBTG um graded exercise therapy stuff is so harmful for some people, but other people have found it to be helpful. And I think the that fact is what's so divisive. Because if you found it to be very harmful, you want to protect others in such a deep way. And so it's caused a rejection of those who have recovered through lots of different methods. I mean, that's the story, is that everyone recovers or finds a new semblance of balance of a new pace in completely different ways. There's not one way to do it, which I think is what makes it such a unique story, but such an important one to recognize the individualization of this experience. I don't know. I think that's why there's so much conflict around it.

SPEAKER_01

Yeah, there's and there's definitely some lightning, lightning rod um phrases and words, and and we've touched on a lot of those. CBT, get FND, you know, those are those are all you know acronyms in the that that we're well familiar with in the long COVID community that that you know tee people off. Um so I guess moving on a bit, um my uncommon story that you cover in chapter seven, uh, and we talked about this during our conversations and interviews and what landed in the book, and that is um the socioeconomic nature and cruelty of long covid. Um I was you know um a white male with a with a lucrative job. And um, although I would give credit to my wife because I made uh I've actually got a good blog post on this, and like what are the what are the navigational moves you you need to make when navigating disability? Um I was I was fortunate, uh as you know, at the that I uh filed for FM FMLA, um, which gave me some protections while I was still employed, and then I went to HR and they encouraged me to file for short-term disability. So I had a a much better path. And um, you tell a lot of heartbreaking stories about people that that don't have that situation. So I was able to keep my home. Um I I know of a couple people that live on the street uh with long COVID because they've lost everything. Uh so I think there's different strata. There's the there's the economic piece you talk about in your book, gender, even sexual orientation, race, all plays into it. Um maybe you could speak to that uh for a little bit and kind of the breadth of stories that you you came across. Because I I I sometimes use the word lucky, I but then I counter that with yeah, but I you can't feel too lucky getting long COVID and then cancer. Um, but I've I've had a more fortunate outcome um than than many others.

SPEAKER_04

Yeah, and you know, biomedicine itself is like built on white supremacy. So like thinking about how our our racial hierarchies in the US exist. Like I use your story and um and other white people's stories, and and and Peter Brown, one of my mentors. And I just want to say that you and Peter were so courageous to let me use your stories of what you can do when you have access to money. And I think spelling that out, especially to American readers, about how inequitable our system is, is so important. Because if you have all the money in the world, not that you have all the money in the world, but if you have access, you were able to get disability quickly, which you know, so many people are like, I can't get disability. One woman, and I talk about this in the same chapter as yours, was like, you know, my lawyer thinks I should just become homeless because I'll get, I'll be more likely to get disability, even though I'm already living with my father who's pretty abusive to me. You know, like these stories are so present and so common, but providing your story and Peter's story, who had the um gaye and barre um condition where he was completely disabled and on a ventilator, telling those stories and telling what visibility does and telling what money does is so important to show what is possible. And it should be an equitable thing that everyone has access, despite having these severe conditions. Everyone should be able to do, you know, the therapies to see what works for them and to do um participate in studies, you know, but it's just not the case. And you had a lot of courage to let me use your story, and your blog has been so instructive for so many people. It's it's so I just I wanted to thank you for that.

SPEAKER_01

Yeah, no, I appreciate that. It but it it doesn't um it it still doesn't mean that I myself or Peter, because I um you know um you talk about his story in in your book, and um it still doesn't lessen the fact that you we were uh chronically ill. Uh we had our lives taken away from us. I I I thought I was gonna lose my home. And I I was a driver driver from third grade, uh, where I was uh collecting cans and digging hangers out of the dumpsters to sell to the dry cleaners. And you know, that carried me through my whole career, and I saw the potential for it all to tumble uh like a house of cards. So I I had different stresses. I mean, losing a home of that I'd you know worked my entire life to be in a position where we are today. Um, but I also I also, in the same breath, you know, do consider myself fortunate. Um, like I said, because I've got I've got friends living on the street, which is heart heartbreaking.

SPEAKER_04

But your story, even someone with means who has built their way up to have a comfortable life, the fact that you were concerned of loot for losing your house sh shows how problematic the system is, right? It shows how we just keep stretching and and taking away safety nets for our humanity, for our country. And that is something that really needs to change.

SPEAKER_01

Actually, and it's only it's only getting worse, by the way. I was reading yesterday that that uh they're considering um putting provisions in Medicare, not Medicaid, that people with cancer should go to work.

SPEAKER_04

Just getting so much worse. It's um it's really actually so upsetting. If if anyone is interested in just having a deep think about the health system, I have this new publication, Science Politics. Go to sciencepolitics.org. And Sanjay Basu, who is an epidemiologist and physician, um, has been writing these incredible essays on the health system. And I would encourage anyone to read them. I think they are brilliant. And we're gonna put together a special collection so you can read them all together. Um, but he has a column that he publishes monthly. So I would encourage people to take a look at those. I think they are so good. And we have some other we have another history of health insurance in the US. Um, and we're just trying to really critically dig at what is going on and what is possible within this pretty problematic system.

SPEAKER_01

Right, right. Um so we talked a lot about Anthony Fauci already. Um, so how did we get there? I mean, so um, and and I talk about this, and that uh the the first president pretended like it wasn't a problem at all, and then Biden came in and pretended it was gone entirely. It it just so are you seeing this around the world or how how did we get to the point where it's almost like you wouldn't question cancer or leukemia or leukemia form of cancer or name name your XYZ disease, it's been well defined for a long time. Um this has become so political where to the point where a certain side of the the aisle believes that COVID is a cold, um, and long COVID is a joke. Like this it's not believed at all. So I just it's shocking that that became a part of our fabric of culture.

SPEAKER_04

Yeah, and I would frame that um as like an active process of forgetting that's happening right now. And um I actually had a really amazing conversation with some of my I gave this talk in June in Tokyo and um I write about it on my Substack, but um I found it to be so interesting in part because people are talking about really framing and actively having these conversations about what people are doing to actively forget. And at this moment, when everyone knows about long COVID, especially if you're in medicine, like it's been all over the news. You're living under a rock if you haven't heard of it. But there is, I think, an active process of forgetting or dismissing that people are undergoing culturally. Um, that is really complicated. And that's a cultural process. And I I don't have a great analysis of why or what's happening. Um, but I would agree with you that that's what's happening. Um, and people are aggressively doing this. And it may be a political move. Um, I definitely think it's a political move in some ways because people are, you know, want to um erase suffering and say, oh no, things are getting better, things are good. This is a rosy side. You should vote for me, you should support me. Um, so I definitely think that is happening. Um, but yeah, the processes that are having happening in medicine are are interesting. And I don't have a great analysis of that process of forgetting where it's coming from and how it's crafted yet.

SPEAKER_01

Yeah, and it's maybe a question more out of frustration. Um it it uh it's crazy that it it also is become you know, polit which side of the aisle you sit on depends on whether or not you even believe um, you know, it exists, but um it's it's just insanity. Um and it's it's getting worse, as we say. Um so um we talk about on the on the podcast about you know finding light and darkness. And um before we hit record, you know, I I I said that you know um long covet is is is a depressing topic. And so we you know talk for you know 50 minutes about something very depressing and how do you find the light at the end of the tunnel? For for me, um, I think cancer was the thing that actually was a bit of a breakthrough for me. Um I just also recently read uh Suleika Juad's uh book, Between Two Kingdoms, and highly recommend it for someone going through cancer or a caregiver uh for someone with cancer. Um and I finally just had a breakthrough where I'm in and you talk about this repeatedly through your book, of where you you finally need to have some level of acceptance for this is my life and how do I live with it within the constraints of that. Um you give stories of a woman who went on you know deep relaxation uh periods, or uh I can't remember what term you use, but just which was very controversial for some people. Uh well, you know, but you know, I do that in in a in a my in a in a micro sense. So do I because I've adjusted my lifestyle to where my daughter knows that between 2 and 4:30, dad's likely asleep. Um, because that's usually my crash part of the day, but it's also a recharging of my battery so I can have dinner with my wife. So I've yeah, you know, I without getting too sappy, you know, I think cancer, I finally said, you know, I've I I can no longer uh I talked about this in a previous episode. It was um a woman that was on America's Got Talent, and she had cancer, and backstage she had a quote where she said, I can't wait for things to get better uh to choose to be happy. And and not every day is that day for me. I I have bad days, I you know, I still cry, you know, um you've got despondent moments, but you do talk about that, you wrap it up at the tail end of your book, I I feel, in that um you need to find a way to live within the constraints of what you have. And maybe that was another controversial part of the book.

SPEAKER_02

Yeah.

SPEAKER_01

But maybe you can talk to how you wrapped up the book and yeah, and how do people live with long COVID?

SPEAKER_04

Well, I think you already kind of demonstrated the main one of the main points. So one of my arguments throughout the book is that we live in this culture of productivity and efficiency. It makes it incredibly hard when you have an energy-limiting condition, whatever the condition is, to claim space to create a life and a world that fits you, that suits you, that you can live well in. If you need a two-hour nap in the middle of the day, that is excellent. You should take it every single day if you can. And try to do it. It's also hard.

SPEAKER_01

It's also hard to find a a spouse all the time that because you talk about stories of where the woman with her father where he looks at her like she's lazy. And I've got an incredible support infrastructure with my wife, my family, my kids. But I'm sorry, I cut you off.

SPEAKER_04

No, I no, but your case is so exemplar of how to fight against this culture of productivity and deficiency. So, my argument of being able, like what I loved about Nell, who you mentioned, the nurse, who got COVID five times, was so debilitated, she couldn't work, she couldn't care for anyone, she couldn't care for herself. So she just, I mean, and she wasn't super wealthy, but she basically said, I have to get well. And she dismissed everyone and everything. I think her daughter went with her. Um, and she sat, she like sat on a beach in Mexico. She's like, I my body had to reset. I just needed to get away from everything. And part of it is rejecting these cultural ideas of always being busy, of always doing something and being okay with finding what your rhythm is and what you want to do and what you need. And so I think what I like about her story is that she rejected this culture of harm and found a new normal in a way that really provided her an ability to heal. And whatever that healing is, or however it goes, um, she she did find healing and it was a path towards recovery, and it was a path that she still is working on. But I think a lot of people are just kind of actively healing and recovering as they live their lives. And that's really hard. Um, but part of the critique is just, you know, working against this notion that you should be well, you should have all of this energy for everything all the time. This is expected to produce. Um, and so pushing against that is one of the hardest things, I think, that people And that's also that's also not saying that going to a beach on Mexico will cure you. Right.

SPEAKER_01

No, of course not. Yeah, yeah.

SPEAKER_04

No, um obviously that's not gonna cure you. It's not it's not no.

SPEAKER_01

No, I I'm just talking about the ridiculous of taking a line out of the book and and oh and and and saying, oh, well, she's suggesting this. Um I think it's a good uh I wanna I want to end with two things, and one is a quote at the end of the book that I I like um from uh invisible illness. As I have argued throughout the book, recovery from complex chronic illness is not about a cure because there is none, uh, although some people go into remission. Rather, it's about re-establishing a new baseline and pace in life, about remaining what good life means while managing waves of illness. Um and that that to me is at least for me, uh dovetails right into you know this sappy finding light and darkness and you know having to figure out how to l live with this thing. Um that does not mean giving up. Uh so if you know, cancer right now, life-saving and and life extending, it it remains a priority. I still see doctors about some of my sub-diagnosis, including neuropathy, etc. Um, so it doesn't mean give up, but it it does mean, you know, how to how do you enjoy a dinner or a sunset? And it's hard to do because I know people are bedbound. Um, you know, but you at least for me, I've I I try, I try and find uh, you know, how how do I how do I live with the the the cards in my hand?

SPEAKER_04

Oh of course, yeah, absolutely. Um yeah, and I think we all do, I mean, I I have lived with anxiety all of my life, and it changes throughout life, throughout my life, and I have to manage it in really different ways. Um, and sometimes it's helpful for me, and sometimes it's incredibly harmful. And you know, that's a very different condition than long COVID. But I think when you live with a chronic illness, you have to learn how your body functions because there's not one story or one prescription that's gonna cure everyone. We are so different. We have different bodies, different communities, different resources. We live in different countries. I mean, uh the first book I ever wrote, my first monograph I ever wrote was called Synemic Suffering. And I worked at Cook County Hospital for five years and I worked with Mexican immigrant women, many who are undocumented. And in that book, I talk about how the stress of illegal of undocumentation, of being perceived to be illegal, or to um have a loved one who's undocumented, how that stress can make you so sick. It worsens your diagnosed condition. And thinking about the current environment we're living in, especially people who are living with long COVID, who are undiagnosed, do not have access to health care, are not going to a health clinic because they do not feel safe seeking care in a health clinic because of ICE or other conditions. It's just those are the people I'm most worried about right now because I think so many people are suffering and are in pain and don't know how to get well in a system that is so broken. And that is one of the main points of invisible illness. And I hope that doesn't get lost.

SPEAKER_01

No, no, I don't it it it didn't with me, um, you know, um uh reading the book. Um, I want to end with uh a tradition we have here on the Butterfly Pavilion podcast, and that is movie quotes. It's funny because I the first uh guest we had on was Akiko Awasaki, and she's so polished and professional, as are you, and I'm like, God, is she gonna is she gonna uh how how do I propose this movie quote thing to someone so scholarly? But she was a great sport, as as was Petrino. Uh I don't think I gave one to Jonathan Howard, but um I've got a quick one for you. Uh to be on the wire is life, the rest is waiting.

SPEAKER_04

Hmm. That's not from the wire, is it?

SPEAKER_01

Um well you you referenced um the song All That Jazz. So that is a quote from the movie All That Jazz from Gideon, um, who is played by Roy Scheider um in the movie. Um one of my favorite actors from also from Jaws, which is one of my top, top movies. But uh Emily, it's been an absolute delight to have you on um on the tail end of of you know this uh experience having been interviewed with you uh or having been interviewed by you uh for the book. Um I uh thank you and appreciate you having my story in the book because I think it's important for us as storytellers uh to tell our story uh to advance, you know, hopefully more treatment, more cure. But any closing comments um today?

SPEAKER_04

Oh, you know, the best part of doing research and being a researcher. I always joke that I'm an anthropologist because I'm very nosy. But I just I love I love people and being able to connect with you and many other people who I mean, we didn't just have one interaction, we talked a few times and we also texted and emailed several times.

SPEAKER_01

And I mean, there's you made sure that I was able to edit what was gonna wind up being on paper. Of course, or be okay with what was gonna be on paper.

SPEAKER_04

Yeah, everyone, everyone in the book reviewed multiple times what was said about them. And that was really that's really important to me. But the best part of doing this research is meeting incredible, inspiring people and learning from people and being able to share their stories um for a broad audience. So thank you for that privilege. And um, it's just been wonderful. And yeah, thank you for having this opportunity to chat with you.

SPEAKER_01

Super. Well, it's been great to catch up. So, with that, we'll we'll sign off from the Butterfly Pavilion Podcast.