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Dr. Miranda Melcher
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Marshall Poe
Hello everybody, this is Marshall Poe. I'm the founder and editor of the New Books Network. And if you're listening to this, you know that the NBN is the largest academic podcast network in the world. We reach a worldwide audience of 2 million people. You may have a podcast or you may be thinking about starting a podcast. As you probably know, there are challenges basically of two kinds. One is technical, there are things you have to know in order to get your podcast produced and distributed, and second is, and this is the biggest problem, you need to get an audience. Building an audience in podcasting is the hardest thing to do today. With this in mind, we at the NBM have started a service called NBN Productions. What we do is help you create a podcast, produce your podcast, distribute your podcast, and we host your podcast. Most importantly, what we do is we distribute your podcast to the NBN audience. We've done this many times with many academic podcasts and we would like to help you. If you would be interested in talking to us about how we can help you with your podcast, please contact us. Just go to the front page of the New Books Network and you will see a link to NBN Productions. Click that, fill out the form and we can talk. Welcome to the New Books Network.
Dr. Miranda Melcher
Hello and welcome to another episode on the New Books Network. I'm one of your hosts, Dr. Miranda Melcher, and I'm very pleased today to be speaking with Dr. Emily Mendenhall about her book titled Invisible A History from Hysteria to Long Covid, published by the University of California Press in 2026. Now, obviously, as the title suggest, this takes us very much up to kind of current discussions today. Around illnesses that are often invisible. But it's not a history that starts with COVID There is a lot more that can be investigated here to understand where that invisibility comes from, obviously from many different places and lots of developments over time. But important and interesting to investigate how we get to a position today where kind of some illnesses are better known than others, even though, I mean, literally speaking, a lot of them are invisible to the naked eye. So it's not necessarily an inevitable position we've ended up in that some things are better understood than others. And that's the sort of thing that we're going to have a bit of a discussion about and figure out. So, Emily, thank you so much for joining me on the podcast.
Dr. Emily Mendenhall
Thank you for the invitation. It's great to be here.
Dr. Miranda Melcher
Could you start us off by introducing yourself a little bit and tell us why you decided to write this book?
Dr. Emily Mendenhall
So I'm a medical anthropologist and I've been working with women and studying chronic illness. I've listened to hundreds and hundreds of interviews about people's life stories, living with chronic illness, how they navigate a fulfilling life in spite of illness and through illness around the world, largely with low income people. I spent five years at Cook County Hospital in Chicago working mostly with Mexican immigrant women. I spent time in Delhi, a year in Delhi. I've spent a lot of time in South Africa and Kenya. And this work was really focused on what chronic illness is and specifically through type 2 diabetes. And so it's something I've been thinking about from a biological perspective, from a social perspective, and from a psychological perspective. And one thing that I've noticed and and learned from these hundreds and hundreds of interviews is that no one ever lives with one thing, no one ever has one challenge. But the overlapping social, psychological and biological realities people live with affect their life in really deep ways. So this has been a centering part of my work for a long time. And even when there are deeply biological realities, taking stock of social and physical and psychological or emotional factors as affecting people is just really, really critical. Anyway, when Covid hit, I was living in D.C. and I was finishing up some work in South Africa. But you know, I had these two, this four and six year old and we wanted to quarantine with my family. So my husband and I put the kids in the car and drove out to Iowa where we arrived in the middle of an outbreak. Now in D.C. everyone was being really careful and some of my colleagues were involved in the global health security response and how careful and seriously people are taking the Pandemic was very different as we drove west and as we got farther west, there were fewer masks. And we arrived in the middle of an outbreak to my hometown called Okoboji, Iowa. And you know, very few people were masking and there were just extraordinarily divergent views on Covid. So I am a very nosy anthropologist. So I wanted to know what was happening, so I rolled up my sleeves and interviewed everyone I could. And that ended up being my book called Unmasked. But at the same time as I was finishing the book, a student of mine got really, really sick with Long Covid and learning more about his experiences. And I actually, he was thinking about dropping out of the program and specifically out of Georgetown for a while. He decided to stay and I encouraged him to write down his, make it have a diary essentially of all of his symptoms every day, his experiences in medical settings and elsewhere, and really write an autoethnography. And it was really fascinating to, to walk alongside him during this experience. I learned so much. And then he did this further study and we were just in constant dialogue about this. And then I just became really interested on, you know, what Long Covid teaches us about the history of complex chronic conditions that medicine really does a bad of engaging with, of recognizing, of taking seriously measuring in clinical settings, but also helping people get better from, you know, to heal with. So I wanted to take a historical look specifically. You know, for a long time my work has primarily focused on women and complex chronic conditions are largely affecting women, although not exclusively. And I have a very diverse group of people I interviewed and, and talk about in the book in part to, to really communicate the complexities that people face. And this isn't. The book isn't just about one disease or illness, but it's more about the collective, the experience of dismissal and how people move through the world and manage the culture of medicine that can be somewhat, sometimes harmful.
Dr. Miranda Melcher
Thank you for that introduction. As you said, kind of the combination of the real world experience and then as you said, you have the tools as an anthropologist to go, well, hang on a second, I'm going to investigate what's going on then here kind of in real time to an extent. And obviously we're a few years away now from that immediate impact or experience experience of the first COVID lockdowns. So perhaps we have a bit of perspective to think about, especially with the research you've done, looking before COVID to understand how and why Covid was or wasn't a historic shift about how people thought about illness. And sort of science and medicine and our understanding of it.
Dr. Emily Mendenhall
Absolutely. You know, there's evidence that people around the world were affected by the great flu. There is a famine that's been discussed about in the literature, even though, you know, the great flu and long flu has been largely dismissed from a hundred years ago. But some people were so, so sick with long flu that they couldn't even plant or harvest their corn. And that's actually known as a famine in itself called famine of the corns in Tanzania from after the great flu. But what COVID 19 did is it brought to the forefront this extraordinary virus. And you know, for some, from some people, for the first time they'd ever experienced being shut in their houses and imagining and experiencing what it means to fear a virus that you can't see and lose a social life that makes you feel somewhat invisible or reimagine who you are in the world was an extraordinary challenge for so many people. And I think it brought to light not only that experience of the physical transformation of people, individuals and families and communities, but also the observation and the increasing recognition of people who were affected with long Covid. And some people have recovered and others haven't. And those who haven't have a very particular experience that is incredibly important and valid, and others who have have an also equally important experience. But these experiences are quite different across the board. And long Covid itself is a complex experience. What it tells us is that no patients are the same in their social or emotional experiences, but particularly in their biological experiences. And seriously, how the virus has caused such sickness is an imperative obligation of medicine.
Dr. Miranda Melcher
Yeah, it definitely was a shock for many people, but then thinking about kind of what is known and not known, I mean, obviously that applies to individual experiences of like, I don't know if I'm getting sick, I don't know where the threat is. I don't know what it's like to live shut up in a house. Like, that's obviously one level of kind of known and not known. But there's also the sort of medical side of what's known and not known. And we maybe see this differently. It doesn't necessarily come out in emotional language. It might come out more in terms of like, here's a set of diagnostic criteria and here's the kinds of evidence we're looking at. Maybe, though, we can understand that as being sort of a similar thing of like trying to make sense out of something that could be scary. And if we think about it from the emotional side, like sometimes the trying to make Sense of things like doesn't necessarily help or doesn't help as much as you might think it is. That maybe true on the kind of more diagnostic criteria side of things too?
Dr. Emily Mendenhall
Yeah. You know, one thing I talk about is that most people who have a complex chronic condition, for example, like Long Covid, have multiple diagnoses. So diagnoses are just collections of symptoms, but many people have multiple variations of their symptoms and expressions that are, you know, interpreted through medicine. Medicine is a culture. It's interpreted by this cultural naming and diagnosing. These kind of constructs that have been created and applied that, you know, are, are very complicated because patient or physicians specifically are not necessarily trained to care for patients with complex chronic conditions. Many people, many clinicians I spoke to said, I've never, I've never even had any introduction to anything like myalgic encephalomyelitis, for example, or chronic Lyme or even like Ehlers Danlos syndrome in medical school. And that, that introduction to these complexities, these systems wide conditions, was so limited that it makes it really hard to communicate broadly across clinical settings, although there are some who are doing these really targeted educational campaigns. But as a result, it makes it really hard for, for patients to communicate their symptoms when there is an information and knowledge gap. And this was a huge challenge and remains a huge challenge in the patient community.
Dr. Miranda Melcher
So thinking then about what this gap might mean in particular cases. You mentioned earlier that you've done a lot of research specifically looking at women and their experiences within the sort of medical ecosystem. When we're talking about particular diagnoses, there's one you focus on the fnd diagnosis. Given what you've just explained around the kind of gap between patient knowledge and what clinicians might do, why did you find that patients, maybe especially female patients, don't want that kind of diagnosis, even if they go seeking medical attention?
Dr. Emily Mendenhall
It's a great question. You know, I use the hysteria notation from hysteria to long Covid to talk about how long women have been dismissed and shut down by medicine. The hysteria itself is a cultural phenomenon and it doesn't actually reveal real biological realities. And like feminist science critic Elizabeth Wilson writes about how taking biology seriously is something that the feminist agenda has really overlooked. But that's one of the objectives I do and I, I do talk about, especially when I talk about hysteria. For example, people with Ms. Who now they're actually, Ms. Can be measured by blocks in the brain. You know, actually plaques in the brain are no longer attributed, you know, attributed to hysteria. They have Ms. And These, as we have more biological evidence of what people have, the realities emerge and the diagnosis sees change and the ways in which patients are viewed in medical systems are transformed. So I talk about the FND diagnosis, particularly because it came up in my research. A lot of the things that I discuss, both problems, histories come from speaking with patients, speaking especially with patient scholars who are so incredibly knowledgeable and have this really deep embodied experience as well as clinical experience. And so many students or so many, sorry, so many patients expressed the fear that, you know, that they were told by one or more clinicians that, or suggested that they had functional neurological disorder. And a few patients took a lot of time with me to talk through what this means. And what it means when you have FND written into your medical chart is that you are for a very long time, maybe forever ignored and your biological realities are undermined just simply by that notation. So this brings to light the challenge of having such limited education in medical school about complex chronic conditions which are symptom wide and also cluster diagnoses. So, you know, really taking seriously the fact that hysteria is, is an outdated term that was used when there wasn't enough understanding of people's real biological realities and can be quite harmful. I mean, not only the term hysteria, chronic fatigue syndrome, that term that I spend a lot of time talking about how that term can be quite harmful. And as fnd, these are all really health conditions and names that have become weaponized within the culture of medicine. And it's important to talk about that and realize that how we think about these complex chronic conditions needs to be more attuned to the biological realities people are experiencing.
Dr. Miranda Melcher
I think it's this culture of medicine piece that's really, really key and something that obviously things like medical school, medical textbooks, what is and isn't covered, as you've mentioned, is a really big part of this. I was fascinated to read in the book that there are some other aspects maybe that are less obviously involved. For example, anthropology as a discipline has been involved in at least some of the kind of medical conceptualizations of certain diseases. Can you tell us about that aspect?
Dr. Emily Mendenhall
Oh, yeah. I found that to be so interesting in my discussions with Arthur Kleinman, a very well respected colleague who has really been powerful in framing how we think in the discipline about psychiatric categories and about the categories of complex chronic conditions themselves. And he talks a lot about how he, you know, in his early career went to China looking for depression and he found this much more nuanced complex chronic condition that he, he aligns somewhat with Neurasthenia. Neurasthenia is somewhat linked to the harmful frames of hysteria, in part because at the time there wasn't the biological language to talk about what these conditions were or what they presented. Instead, they were cultural bias in quite, you know, quite harmful frames that were rooted on the lack of understanding and as, as well the misogyny within society as a whole. But, you know, as I was speaking with Dr. Kleinman and others, many of my colleagues in anthropology, who are my elders, who are Kleinman's contemporaries, they talked about how harmful this framing was for the discipline. And I thought a lot about not only what these frames were and what they did, but also the fact that after this engagement in the discipline itself, they were completely dropped. So in graduate school, I actually never really learned about me CFS at all or any of these chronicities. It wasn't until probably, well, I think Joe Dumit started writing about illnesses you have to fight to get in the late 90s, early or early 2000s, really. And that was a really complete reframe and pivot from that early psychologization of these conditions. To argue about the medical experience and how the these conditions are political within the medical sphere and the culture of medicine can be really inhibiting. Another really beautiful book written by Abigail Dumas, Divided Bodies, really gets to the heart of this work, and those pieces are so important. And thinking about how, you know, this frame of illnesses that are hard to get really can help us challenge medicine to think about why they're so hard to get and what it means and why. A clinical diagnosis of a complex chronic condition is critical not only for treatment pathways, but also for disability rights, to get access to insurance, get access to Social Security, to be able to really heal, to find space to heal.
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Dr. Miranda Melcher
So I think this idea of access and rights is kind of a key part of it because the consequences of not having this clarity or having such a struggle to get information and treatment has kind of all of those sort of really key consequences that you've outlined. And maybe a way that we can think about it, as you suggest in the book, is sort of a silencing or even a structural silencing when we're talking about people living with complex chronic illnesses. Can we add that sort of thinking into our discussion?
Dr. Emily Mendenhall
Yeah, I think that's so important. I think this is probably one of the most important contributions of this book is that it's not just about vulnerability or the problematic health care system which we have in the U.S. i mean, when you put profit at the center of health systems or at health care, we've known there's studies around the world that have shown how problematic and how harmful that really is and how profit driven health systems make people sicker. But beyond that, which is a huge challenge in the United States, but beyond that, there is a culture in medicine that silences patients because of these things we've been discussing is the lack of education around complex chronic conditions. And it's not just that people aren't aware of these conditions, but that the structure of medicine itself, where you have, you know, when you're billing in five minute intervals, these patients need a lot more attention and they need to have this in depth dialogue not only about their embodied experience, but and what they've read, but discussions and kind of fact finding and, you know, troubleshooting with their clinicians so they can heal. The one thing that I've really taken away from this is that people who've lived with these complex chronic conditions forever. For example, this woman Tam, I talk about in the book because I think she exemplifies a pretty severe case. She has endometriosis, she has mcas, she has all of these conditions that are really difficult. And you know, the patients especially who have lived this really complex life with complex chronic conditions that have, you know, affected them periodically and throughout their lives are the most knowledgeable people about their health conditions. So really recognizing patients as knowledge partners who can engage in this deep way is, would be a transformational point. And you know, my, my brother in law, who's incredible, he's a family doc and he's one of the main protagonists of my book on masks. He said to me, you know, the most important part of this work is this idea of knowledge partners and how we can rethink and use those terms in medicine. And I think it's really important to think in those ways.
Dr. Miranda Melcher
Yeah, that's definitely interesting to think about. And the kind of wider repercussions of what is going on here and what sorts of language kind of can and cannot help. I mean, unmask, obviously, I don't want to use the pun too much from your previous book, but that does sort of suggest itself here. So then if we've pointed out kind of ways in which there's silencing going on and we don't obviously want to contrib to that, one of the ways you suggest moving away from that in the book is obviously identifying where the problem is, but you also suggest an alternative, the idea of threshold metaphors. So can you tell us more about kind of what this is and why this might be a way forward?
Dr. Emily Mendenhall
Well, I think thresholds comes to the absolute foundation of the I, the fact that, you know, every, you know, like I've said, I've interviewed people around the world for two decades and I've never met anyone with the same problem or the same biological reality. And really understanding that, you know, 10 people with long Covid may have totally different expressions of long Covid and have different needs. Now there may be communities of people with really, really severe cases who have a very similar collection of symptoms and need various, you know, scientific innovation and focus specifically on interventions to help them get better. But there is not one size fits all solutions here. And I think that's what makes people really frustrated. They want to have a quick fix, they want to know what they can go in and transform. But our bodies are complicated. We're not machines. We are these deeply, we have these deeply historic physical memories in our bodies that, you know, I actually interviewed a lot of people in my community of global health scholars or practitioners who've lived around the world and had all sorts of infections and bacteria, from viruses to bacterias parasites and how these infections over time have enhanced their susceptibility to long Covid. So in many ways long Covid is a tipping point. It may be chemical exposure, it may be a combination of viruses. I mean, we have various microbiomes throughout our bodies. We have, you know, different collections of, of infections in our gut, from our heart to our lungs. And these collections and microbiomes may play a role in these systems wide breakdown. And of course no person's going to be the same because everyone journeys through life differently. So that's why I use the thresholds metaphor because it's really important. I mean, I draw from biological theory of exosomes, I draw from biological theory of allostatic load, a black feminist theory of weathering, and really put at the centering, at the center. I mean, and all of, you know, pulling together all of these theories to think about thresholds is really critical because recognizing how people come to this, to become disabled is critical, but it's also individualized. And that is a very, very essential part of the book. And it's why we need to rethink medicine. Because people need to be able to meet with multiple experts at once to really get to the heart of the matter. And without having a care team that's really focused on getting you well. In many of these extreme cases, it's impossible to live well with illness.
Dr. Miranda Melcher
And it is, as you mentioned, kind of so specific to everyone's individual journey and that there is no kind of identical case or experience anywhere you look. And obviously one of the factors for that is kind of where you are, the health system that you're in. And obviously you focus on the US and you've given us a sense of some of the kind of larger impacts. Right. It's not just like, oh, it's hard to deal with the healthcare system. It's like, well, what does this mean for housing? What does this mean for benefits? What does this mean kind of for all these other aspects of being able to live day to day in a lot of senses. Right. You also talk in the book though that we can extend that even further to not just kind of how do you get through a day or how do you get through a week, but also sort of, I guess more existentially like how do you operate in terms of identity? Particularly you talk about this in terms of the US in relation to ideas of kind of what it means to be American, what it means to be amongst this community. And that's obviously very different to kind of tomorrow's Tuesday, what am I going to do but is still part of this conversation around chronic illness, for instance, long Covid. So can you tell us about that aspect of the book?
Dr. Emily Mendenhall
Yeah, you know, I really started thinking about this as I was reading a lot of the historic texts actually around neurasthenia, as well as my student being really, really sick, thinking about how even these complex chronic conditions which have lived on for a long time, many of them probably link to viruses or bacteria or most likely a combination of them. We know that people with long Covid, for example, or me cfs are more likely to also have concurrent viruses that make them even sicker, from Epstein Barr virus to herpes simplex virus and to, you know, possibly have autoimmune conditions that make it really difficult to recover. Because these aren't. These aren't viruses that you can, you know, do away with. They're things that live in your body for a really long time. So managing them is really complicated. So, you know, really recognizing that remaking and reimagining how people can live with this illness is something that isn't uniform and really requires attention is critical.
Dr. Miranda Melcher
All right, that's helpful to understand kind of the wider implications then of what this could do. And of course, there's the impact on individuals, kind of by extension on communities. But it's not just the idea that like, well, you have to kind of sit there and take it, if that makes sense. Right. There are responses that are possible. So this is something you discuss quite actively in the book, using the term embodied health movements. Do you want to unpack that a little bit for us?
Dr. Emily Mendenhall
Yeah, it's. I mean, it was just phenomenal to interview activists. I've been working in health and global health for a long time and you know, studying AIDS activism was. Was phenomenal and has been a really central part of, you know, the global health experience, particularly, especially because so much money has flooded into it was so fascinating, especially listening to me activists and interviewing both scholars and patients and activists themselves to learn about the complex ways in which activism has been transformed through time and how the alignments and activism in partnership in conversation with and also quite separate from the AIDS activism, breast cancer activism that has emerged through time and also have the disability justice movements and racial justice movements have kind of co aligned and emerged and transformed and how the centering of these movements are really rooted or have rooted the long Covid activists that have emerged and become essential for defining this moment in history. And it's just incredible to follow the work that the long Covid activists have done. Largely women around the world in different places, communicating and setting a precedence for what digital activism can do and can mean. I think it's really important to acknowledge the work that they've done and kind of reframed how we think in medicine, whose perspectives matter, whose ideas and experiences truly matter at this moment in history. And yeah, it was really just remarkable to follow, to follow that work. Some of this is chronicled in Ryan Pryor's book, the Long Haul, which tells this remarkable story and discusses how these patient activists have been compared to, for example, Larry Kramer and other AIDS activists from the last several decades.
Dr. Miranda Melcher
Yeah, seeing those links over time is really interesting to give listeners a sense kind of what are the sort of embodied health movements that you looked at that are kind of happening now that people might want to be more aware of?
Dr. Emily Mendenhall
Oh, sure. You know, I spend a lot of time speaking about, about the Long Covid movements that I've been following. The Patient Led Research Collaborative is one that I think is really phenomenal and exemplar. I do know that they need more funding and they're always fundraising. But one of the things that they came from the history that I talk about is that during early on in the pandemic, when people were starting to get really sick, some activists got really sick who were involved with this organization called Body Politic, which was a health and wellness collective in New York City. And they started a WhatsApp group for people with similar symptoms to come together, and it ended up trans. You know, there were thousands of thousands of people on this WhatsApp group and representing over 30 countries around the world, which was the first time where. And in fact, activists actually even defined on Twitter Long Covid what Long Covid was. And they defined it and they were able to grab some sort of power over what it was and what it meant to them. And that was the first time in history that patients had been able to be in the driver's seat to define what their symptoms are and what it means in medical settings, which was pretty, pretty remarkable. And the WhatsApp group turned into a slack group, which has or kind of transformed into these different working groups. And you know, maybe, probably because I'm a researcher, I think the Patient Led Research Collaborative is just phenomenal because they've been able to do all of this research on their own and collaborate with leading scholars, but they've also been able to really interrogate patient hypotheses. Again, some of these patient experiences are quite unique and individualized, although there are many patterns that are seen across Communities, particularly people with similar clusters of diagnoses and taking seriously and investigating patient hypotheses about their complex chronic illnesses is remarkable and important. So I've been following some of that work and just the collective knowing and collaboration I find to be setting a new precedence about how we engage with these, you know, long flu, long Covid or chronic Lyme, and these conditions that are largely dismissed in medical settings, but we know are very real and have both biological realities and all sorts of possible treatment modalities, many that are still yet to be found.
Dr. Miranda Melcher
Very interesting to see how this continues to develop. So thank you for flagging that kind of activism in progress for listeners. That's, I think, obviously another big takeaway that we have kind of clarified in our discussion. Is there anything else you're really hoping readers take away from the book?
Dr. Emily Mendenhall
Yeah, I think one of the things that I talk about in, at the end of the book is my, my mentor who became really sick with Guillain Barre Syndrome and he, you know, he fell on the ground and, and, and went into a coma and was radically physically harmed, maybe almost didn't make it, but he did. But the, because of the physical and quick diagnosis and physical elements, the incredible visibility of his, his dysregulation and his disability, he was able to access incredible recovery spaces. I talk about shepherd center, which is this wonderful recovery center in Atlanta that he went to. And it made me think a lot about what it means to recover when you have a condition that maybe came on suddenly but not so visibly that put you on a, in a coma or put you, you know, that, that made the insurer, the medical insurer take your health conditions seriously. And so I think reimagining, and I, and I actually think reimagining health care through the needs of people and the perspectives and really working with patients to define what complex chronic conditions care should and can look like is essential. Now, this involves, you know, reimagining health care through what, you know, actually, I had a baby in the UK and so I spent a lot of time interrogating clinicians about what primary care looks like. And one of the things I was struck by, and you know better than I do, was that clinicians are often given bonuses for keeping people well. And I think if we could reimagine medicine through this lens and prioritize our general practitioners, our family practitioners, our nurse practitioners as, you know, really conduits of keeping people well and, and really amplifying that, I think how we envision what clinical care care looks like in America could, could be radically transformed. But of course, a lot of this work has to be systemic through insurance. And until our insurance companies are reimagined as not not for profit. I do think this is an uphill battle, but I think it's going to take other innovators. I mean, maybe, maybe. Is it so radical to think that Amazon could challenge medical insurers by, you know, I don't know, creating some other alternative? I know Kaiser Permanente is an alternative. I know there's lots of concierge clinics that provide this long term care. I know that military medicine and the VA system itself is a public system that provides very integrative and thoughtful care that most people don't have access to. So we have a lot of models and innovative opportunities in America to rethink what care can be for some of our most vulnerable patients who suffer the most. And it's really time to put money and attention into that because there are so many people who are still suffering from COVID The COVID pandemic is not over for them. And suffering is not only biological, but the social suffering that people experience. Experience is so profound. So many people have lost their jobs, they've lost their homes, they've lost their families, they've lost their friends. And these can be really harrowing experiences for people. And so many people are still experiencing this. It's not over. So taking that seriously in the social sense, but also reimagining the systems of medical care could not be more urgent.
Dr. Miranda Melcher
Yeah, no, urgent very much indeed. Is this the sort of thing then that you're continuing to work on? Obviously you mentioned your previous book in many ways was related to this one. Or is that continuing in the future with your current work? Or is there something else on your desk you want to give us a sneak preview of? Or, I don't know, are you off to go take a nap for six months?
Dr. Emily Mendenhall
Well, I have to say many aspects of working on this book reminded me of how challenging it is to talk about science politics. And I've launched a new journal called Science Politics. It's actually, we're not calling it a journal, it's a journal zine. It's academically rigorous like a journal, but journalistic storytelling like a magazine. So go to sciencepolitics.org and read our pieces. I'm trying to work with scholars and practitioners and policymakers to help write really accessible and engaging pieces that go deep, are more historical and engaged than, and can be largely communicated to a broad audience than we really see so many people I know have written op eds that can't be placed because they don't have the support to do so. And we're trying to change that. So please come read sciencepolitics.org we have actually this whole week we have a lot of pieces coming out talking about the US Engagement in foreign aid and what it means on the one year anniversary of the U.S. aid stop work order. There's lots of pieces from various perspectives which we value and prioritize. And so this is really my I'm editor in chief. I started this with three other incredible women and we're having a lot of fun working on this. And I'll be really focused on amplifying the views and priorities of others in this milieu for the foreseeable future.
Dr. Miranda Melcher
Well, that certainly sounds like plenty to keep you busy with. And anyone who wants to get into more of the topics we've discussed can of course also read the book titled Invisible A History from Hysteria to Long Covid, published by the University of California Press in 2026. Emily, thank you so much for joining me on the podcast.
Dr. Emily Mendenhall
Thank you so much, Miranda. What a privilege to be with you.
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Podcast: New Books Network
Host: Dr. Miranda Melcher
Guest: Dr. Emily Mendenhall
Book Discussed: Invisible Illness: A History, from Hysteria to Long COVID (University of California Press, 2026)
Episode Date: January 24, 2026
This episode features a conversation with medical anthropologist Dr. Emily Mendenhall about her book, Invisible Illness, which traces the historical, social, and political contexts of chronic and often misunderstood illnesses—from hysteria in the 19th century through to Long COVID today. The discussion unpacks why certain conditions become “invisible,” the struggles patients face to be recognized by medical systems, and how activism and new frameworks can reshape care.
"No one ever lives with one thing, no one ever has one challenge. But the overlapping social, psychological and biological realities people live with affect their life in really deep ways." (Dr. Emily Mendenhall, 03:00)
"What Long Covid teaches us about the history of complex chronic conditions that medicine really does a bad of engaging with, of recognizing, of taking seriously..." (Mendenhall, 05:59)
"Long flu has been largely dismissed from a hundred years ago... some people were so, so sick... they couldn't even plant or harvest their corn." (Mendenhall, 07:43)
"Medicine is a culture. It's interpreted by this cultural naming and diagnosing... Physicians specifically are not necessarily trained to care for patients with complex chronic conditions." (Mendenhall, 10:35)
"What it means when you have FND written into your medical chart is that you are for a very long time, maybe forever ignored and your biological realities are undermined just simply by that notation." (Mendenhall, 13:29)
"Illnesses that are hard to get really can help us challenge medicine to think about why they're so hard to get and what it means and why. A clinical diagnosis of a complex chronic condition is critical not only for treatment pathways, but also for disability rights..." (Mendenhall, 17:34)
"There is a culture in medicine that silences patients... It's not just that people aren't aware of these conditions, but that the structure of medicine itself... silences patients." (Mendenhall, 19:56)
"Recognizing patients as knowledge partners who can engage in this deep way is, would be a transformational point." (Mendenhall, 21:27)
"I've never met anyone with the same problem or the same biological reality... That's why I use the thresholds metaphor because it's really important." (Mendenhall, 22:41)
"Remaking and reimagining how people can live with this illness is something that isn't uniform and really requires attention is critical." (Mendenhall, 26:50)
"That was the first time in history that patients had been able to be in the driver's seat to define what their symptoms are and what it means in medical settings, which was pretty, pretty remarkable." (Mendenhall, 30:02)
"...reimagining health care through the needs of people and the perspectives and really working with patients to define what complex chronic conditions care should and can look like is essential." (Mendenhall, 33:31)
"So many people have lost their jobs, they've lost their homes, they've lost their families, they've lost their friends. And these can be really harrowing experiences for people." (Mendenhall, 35:35)
"...It's academically rigorous like a journal, but journalistic storytelling like a magazine..." (Mendenhall, 37:04)
On Patient Dismissal and Structural Silencing:
"What it means when you have FND written into your medical chart is that you are for a very long time, maybe forever ignored and your biological realities are undermined just simply by that notation."
—Dr. Emily Mendenhall (13:29)
On the Need for Knowledge Partnership:
"...the most important part of this work is this idea of knowledge partners and how we can rethink and use those terms in medicine."
—Dr. Mendenhall quoting her brother-in-law, a family doctor (21:33)
On Patient-Led Activism:
"...that was the first time in history that patients had been able to be in the driver's seat to define what their symptoms are and what it means in medical settings, which was pretty, pretty remarkable."
—Dr. Emily Mendenhall (30:02)
For further engagement: