Program transcript:
Grant Reeher: Welcome to the Campbell Conversations, I'm Grant Reeher. We used to hear a lot about long Covid, but not so much anymore. Is it still a problem? And also, what does it have in common with other similar so-called invisible illnesses? My guest today is Emily Mendenhall. She's a medical anthropologist and professor at Georgetown University's Walsh School of Foreign Service, and the author of a new book titled, "Invisible Illness: A History, from Hysteria to Long Covid". Professor Mendenhall, welcome to the program.
Emily Mendenhall: Thank you for having me.
GR: We really appreciate you making the time, very interesting topic in this book. Now, I want to start with what may seem like a dumb question, but I want to ask it anyway. What's a medical anthropologist doing at a foreign service school?
EM: Oh, that's a great question. You know, they were looking for someone who worked from biology to politics and someone who could teach global health politics, and who could also really think deeply about the science. And I think that's what made, we actually have several anthropologists in our department, I think because we think so widely and deeply across history, but also across different levels of thinking and ways of thinking. So, it works really well in an interdisciplinary school.
GR: Oh, it's good to think that our foreign service folks are, you know, broadly educated that way. So, tell us how you decided to write this book.
EM: Well, you know, I've been studying chronic illness and women's health for about two decades. And I started working in Cook County Hospital, now Stroger in Chicago. And I started interviewing people about, specifically, Mexican immigrant women about living with diabetes. And I realized then that, you know, living with chronic illness is never just an individualized experience, it's very social. And it also is very complicated, it goes well beyond the biological. It is a social experience, there are emotional and interpersonal experiences that go with it. And also, no one's ever diagnosed with one condition. I've lived and worked in India and South Africa and Kenya, and as I was wrapping up some work in South Africa, Covid hit. And during that time, I had small kids. So, I went out to Iowa, to rural Iowa, and Okoboji, where I'm from, and I arrived in the middle of an outbreak. And my brother in law was leading the Covid response. So, I actually rolled up my sleeves and I started digging in to think about how Covid was affecting the community. And that ended up being a book I wrote called, “Unmasked: Covid, Community and the Case of Okoboji”. And as I was finishing that book, I actually had a student who became really sick with long Covid. After Covid he just couldn't recover, and I kind of walked with him through that recovery. And I just became more and more interested in the fact that long Covid is not just one thing. And I started digging into the literature to understand his experience. And it became, everything fell out in front of me of like how long a history there is to living with complex chronic conditions and how varied these conditions often are.
GR: Yeah. It really expanded then into this broad history that you wrote.
EM: Yeah.
GR: It does seem like we don't seem to be hearing as much about long Covid as we did before. Is there any particular reason for that, or is it just because we tend to think that this thing is behind us? What is it?
EM: Well, you know, from my viewpoint, as a scientist, a social scientist who lives in Washington, DC, there are so many crises right now in science that I think that some of these more, you know, niche priorities are really getting drowned out because the broader project of protecting science funding and protecting the integrity of science, keeping labs open, providing funding so anthropologists like me can do field work. They've actually closed down the anthropology section, social and behavioral sciences section at the National Science Foundation. There are enormous challenges right now. And so, I think it's just drowning out patient activist groups who have had a lot of visibility from the beginning of the pandemic. So, I think that's really what's happening. I definitely don't think they're being quieter and I think they're really organized and getting visibility. And there's some, RFK actually, has given long Covid some legitimate legitimacy. And they keep advocating, the groups keep really advocating and pushing in a way that's really effective. There's some really amazing scientists committed to understanding long Covid. But I think in the mainstream, in like the general media, it's impossible to breathe. So, I think that's more of the issue.
GR: Yeah, that makes perfect sense that it's been just pushed out by so many other things that seem to be coming every week. I want to come back to the long Covid a little bit later in our conversation, but I want to fill in sort of the other things that your book treats first. And, you know, hysteria is right in the title. Briefly, remind us the story regarding hysteria, how it fits into this invisible illness.
EM: Well, you know, the book isn't about conflating hysteria or long covid or myalgic encephalomyelitis, or endometriosis or any of the conditions I talk about. It's more of a critique of the health care system that for so long, you know, system, obviously cultural misogyny, thinking about women as not having real symptoms, dismissing women from the health system, but also having a system that doesn't care for complex chronic conditions very well. In biomedicine itself, the focus is narrowly on biology on one system or another, thinking about the body as a car. You know, if you have a broken arm, let's break the arm, but not thinking about it as a system. And I think that's what makes conditions, many that women experience, specifically that are more common in women, misunderstood or little understood because so little research has been focused on them. And in some ways, they're trickier to find because it's not just a quick fix. There's not necessarily, although, you know, in some cases, there have been diagnoses like, you know, like MS diagnoses have emerged when they were unexpected. It used to be called hysteria. Now, multiple sclerosis is diagnosed by plaques in the brain. That's a really good example of something that people didn't understand. So, they threw it, you know, into the wastebasket of complex chronic conditions. But then they realized, oh, there's this physical diagnosis. And I think with every condition, including long Covid patients would say, well, I have all these biomarkers that say that I have long Covid, that can prove to you that there's something wrong, but it doesn't mean there's like a quick fix for it. It's a complex, chronic condition that unravels all of these systems at once.
GR: So, what would you say would be the, you know, the greatest hits in the last 50 years of these kinds of conditions that meet the criteria that you're putting forward? I mean, MS sounds like a really important one, long Covid would be another one. What are some of the other ones that have been kind of ignored or discounted in recent decades?
EM: So, in the book, I start with hysteria and neurasthenia, which are two kind of complementary conditions that have been used to explain all sorts of conditions. But I spent a little time in the book specifically talking about infection associated chronic conditions. So, for years, for example, syphilis was one of the greatest causes of dementia, for example. There's all of these complexities of viruses and bacteria, and also genetic conditions that come together to create these complex chronic conditions, and, you know, complex systems that are really hard to pin down and easily explain. And I think what this means is that medicine doesn't do a good job of, people are not trained to identify and care for these multi-system conditions. So yeah, the conditions today that I think are most common is Lyme disease.
GR: Yeah.
EM: Lyme disease is so contested. Some people think it's, you know, chronic Lyme disease is a real challenge, others don't believe it's a thing. And I think that comes back to this idea of visibility and not believing patients. If you are deeply, you know, ill and you have all of these complex systems, your diagnosis is going to be made based on a, you know, a collection of symptoms, and you're going to try every type of intervention you can to try to help people, lift people out of bed, right? Enable people to live a semblance of the life they want to live. So, it's really complicated. Sorry, I missed some of your question, so I hope I answered it.
GR: No, no, you got it. I was thinking of chronic fatigue when I first saw the title and I remember I knew someone who was convinced they had that. And obviously something was wrong with her. But it kept being diagnosed as Lyme disease.
EM: Yeah, you know, and I talk about myalgic encephalomyelitis / chronic fatigue syndrome because that diagnosis itself and so many of these diagnoses, and this is where I put my anthropology hat on, they are culturally constructed. And the way that they live in society are very different in the United States compared to how they are elsewhere. For example, I was just in Japan, I actually took this wonderful trip to Japan to give a couple talks with my daughter, my 13-year-old, it was very fun. But what was so interesting in the talks is we discussed how people thought about complex chronic conditions, how it interacted with a very different health system, how people thought about their illness in relation to society and the health system, and also how they thought about masking. There’s in, you know, a lot of the long Covid community or people who are chronically ill or living with a disability, have particular views on masking that the general population does not. And that's very different in Japan. Just because people think about masks and half thought about masks for a long time in a different way as more of a protective mechanism. So, if you see someone masking, it's really they're not feeling well, they're trying to protect you. And here it's more I'm trying to protect myself from others. And so that kind of frame of masking is very much culturally constructed. And I don't think specifically with long Covid, people are thinking about it culturally, specifically within the long Covid community. I would say there is this narrative that this is what it is, and this is how we do things and this is how we should think. But it is so fascinating to think about. And, you know, I did this study on long Covid in Kenya. And the experience there is so dramatically different how people think about long Covid and what it means and what it does. So, you know, thinking about how infections live in the world are different based on individuals and populations and cultures. And recognizing that, I think is really important for moving through the kind of bio-psychosocial dimensions that people really contest.
GR: I'm Grant Reeher, and I'm speaking with Georgetown University professor Emily Mendenhall, and we're discussing her new book titled, "Invisible Illness: A History, from Hysteria to Long Covid". You mentioned women being heavily represented in this category of being discounted or not being listened to and then things being not understood very well or, you know, again, the idea that, you know, it's just invisible or they're making it up. Are there other demographic groups in the United States that have been particularly vulnerable to that kind of treatment and misunderstanding?
EM: Yeah. So, historically the conditions have been called like yuppie flu, associated with like, middle class white women. But what we know is that characteristic is based on a cultural construction of chronic fatigue syndrome itself, which was pretty problematic. And then there have been many journalistic and also scientific accounts of how problematic that study was, which I really kind of talk about in the book. And I just tell the story of how harmful that narrative has been for many patients. And there's lots of elements of that story and I encourage you to take a look at it. But I would say that the problem with these kind of conditions is that we have so little understanding of the deep interactions, specifically among women, specifically among women of middle age, between neurology, immunology and infection, particularly when there is a confluence of infection such as in, you know, microbiomes like, how do we live sometimes, you know, we have autoimmune diseases, we have different microbiomes that are changing through time. And also we know that, you know, if you have Epstein-Barr virus antibodies for example, and you get long Covid, you get SARS-CoV-2, if they sit in the nerves, for example, they could, make you much sicker. So, and that's one example of many, but there's many situations where women may be differentially affected. Now, the important aspect of my book, I think, and there are, Chimére Sweeny is a black long Covid activist who I would say is really doing incredible work. And she would say that long Covid communities have largely blocked black voices, for example, black and Latinx voices. But the complexity of the condition is across all ethnic and racial groups, it's across all classes. It's across all genders. And it may actually be higher rates among black Americans, higher rates among trans Americans. There's a lot of theories about why, maybe some argue because, you know, more oppression over time has prevented people from seeking care and so their conditions get worse. There's lots of theories about who is affected and why. But we don't really have the robust data to, especially people who are maybe not seeking care. We're living in an environment where people are avoiding hospitals, in part because they don't feel safe in institutions like hospitals right now. So, you know, really having that data about the number of people who are affected or whose existing conditions are worsened because of the effects of SARS-CoV-2 sitting in the body and disaffecting multiple systems at once. We just don't have that data. But we do know that, you know, millions of Americans, for example, are out of work across categories, you know, across ways in which we categorize people. People around the country and around the world have become really disabled by this condition. And long Covid is not new, right? It's one manifestation of these kinds of complex chronic conditions. So, this isn't a new challenge. There are people I think, I talk a little bit about the book with myalgic encephalomyelitis, how it was starting to become recognized and there were increasing infective outbreaks that were causing people to have, you know, chronic fatigue, MECFS, in the 80s at a time when HIV was also emerging and there's this really interesting narrative. Emily Lim Rogers is an anthropologist who has a really great book coming out that tells the story, and how, you know, people with HIV got a lot of attention. There was a lot of money, a lot of attention, in part because people could fight and protest in the streets and be visible until they were too sick and passed, while people with MECFS at the time could not be visible, you know, be out in the public space to demand political, you know, funding, political recognition. So, there's such interesting stories from political activism, along with these kinds of cultural constructions of illness. So, there's parallel stories going on in the book because you can't understand one illness without thinking about the system, both the physical, the body, but also the health care system and our cultural kind of nuance in the United States.
GR: You're listening to the Campbell Conversations on WRVO Public Media. I'm Grant Reeher, and I'm talking with Emily Mendenhall. She's a medical anthropologist and professor at Georgetown University and the author of a new book titled, "Invisible Illness: A History, from Hysteria to Long Covid". So let me ask you, kind of a more medical question about long Covid, because I don't know a whole lot about it. I mean, I've obviously read about it, but, do we have a better idea now than we had at the height of the pandemic of what factors cause people who get Covid for it to stay with them so long and create this kind of havoc for them long term?
EM: I think one of the issues that has been difficult in medicine is that long Covid affects different groups of people really differently. For example, there are groups of athletes who have been really affected by long Covid, who've gone into a-fib, for example, several times because of long Covid. There are people who've had pulmonary issues because of long Covid, or they may categorize their long Covid in terms of, you know, lung dysfunction because they were maybe intubated for a really long time and that, you know, conflated with all these other issues. And there are some people who present, more like having MECFS with different types of dysregulation in the body that cause, you know, dizziness, headaches, migraines, cognitive decline, you know, and these challenges, and of course, fatigue, which manifests in really different ways. And post exertional malaise, which is when you, you know, some people take a shower and be exhausted and need two days to recover because that physical exertion makes them sicker. So, there is such a heterogeneous presentation of the condition, that, you know, what it is, is, you know, not very narrow. And I think that understanding that is really important because if you can have this broader understanding that, you know, one of the, a clinician I talked to at University of Texas, she said, Covid is like a fire that lights whatever is vulnerable or preexisting within to complicate and unravel. And so, I think that's a really helpful way of thinking about it. I think some patients would be, there are patients who've been able to recover and gone on and maybe not lived at the same energy level, or they may have some lingering symptoms that they've gone on to live a pretty healthy life after being sick for a year, 18 months or 2 years. And there's others who are really, really sick. So particularly the category of patient who is still bedridden or is still having severe symptoms, who I have absolutely interviewed people who have, are still really, really disabled from the condition. And, I think that is the area that needs the most focus, biologically, biomedically, to figure out how to help those patients. But the diversity of experiences is a characteristic of the condition.
GR: If you've just joined us, you're listening to the Campbell Conversations on WRVO Public Media and my guest is Emily Mendenhall, the author of, "Invisible Illness: A History, from Hysteria to Long Covid". So, do we still have people, let me rephrase the question. Is the incidence of this as far as we know, I understand what you're saying about the complexity of this and how difficult it is to get a good handle on it, but is the incidence of this condition of long Covid lessening or are the, you know, is it that newer infections of Covid are less likely now to produce this case of long Covid? Have the vaccines had any help with that? Because one of the selling points of the vaccines is that if you do get the disease, it won't be as severe. I just, you know, where is the trajectory going on this if you know?
EM: Yeah, I think we know that some most severe cases, especially those people who are still sick, were infected during the first year of the pandemic. And, you know, the fact that we had vaccines and we introduced vaccines, did protect some people, did protect many people. And, you know, the infection, like all infections, is changing. There's many variants that we've had, but the first two years of infection were the most severe. And, you know, some people are still having long Covid or prolonged symptoms after a new Covid infection. And, you know, some people I interviewed maybe didn't have a severe case, their first infection, but they were working like a low, like working as a nurse in a nursing home or as a bus driver in a place where they were constantly with the public and they were infected again and again and again, and their work was pretty arduous. And so, by the fourth time, one woman I interviewed, she was working in a casino, and after her fourth infection, she became so sick she couldn't get out of bed. So, in many cases, some of these severe cases, some are just one infection, some are multiple. Some people have reported vaccine injury, you know, there's a lot of complexity, which I actually don't dig into a great deal in the book. But there are people who report that ,they have long Covid from that. And so, you know, there's a lot of complexity about what the illness looks like today. But I would say incidence is much less now.
GR: Well, that's good news at least. Let me ask you this now, think about it from the patient's perspective. Let's say, you know, I'm having problems. I think maybe I have some sort of combined set of chronic conditions, but I'm not getting, I don't feel like I'm getting the right attention and the health care system for this, I'm not being heard. Do you have any advice for people that find themselves in situations like that?
EM: You know, there are so many people who take different approaches to some people really go online to online communities and seek support from Reddit to Facebook communities. Or there's long Covid advocacy groups to find support to identify other people with similar symptoms. I actually just published on my blog recently, information from this organization that seemed really interesting. It's an app, it's called Atlas. It's an app for you to connect with other people who have similar symptoms. You can kind of disentangle what's going on and actually work with clinicians and experts to help you along with connecting with patients. So that's kind of interesting. So, looking at, you know, there's lots of tools now, I think that one of the biggest challenges that people face is finding a clinician to believe them. So, what I would do actually, there are great clinics. There are clinicians who are written up as people who really care about complex chronic conditions and are working in these conditions and I would try to find someone near you. And if you can't find someone near you, I would just kind of, you know, throw some whispers out to figure out who is the best clinician, who's most open, maybe someone who works with, does women's health specifically or works on, or if you're, you know, if you're presenting differently, looking for someone who cares and works on complex chronic conditions. Maybe your general practitioner, your family doc, or your internist is really good at this. So, you know, if you feel dismissed, go on and seek help from the community. There are other people who refuse to do, kind of online groups, and they look in different ways. So some people go to a naturopaths, some people go to seek integrated medicine, some look to functional medicine. You know, people have really different approaches, and a lot of the people who've recovered who I've spoken to do multiple things at once. They might, you know, one woman I spoke to who had chronic Lyme, she had, you know, high doses of antibiotics, she got on hormones that were really causing disruption and dysfunction in her body. And then she had another medication for her heart. So, you know, all of these, and she also did, a heat / cold kind of process that kind of rebalanced her systems, which had gotten really out of whack. So often those who do recover and the recovery stories I have heard are people who try multiple modalities at once. And it's, I haven't heard ever of anyone who just tried one thing and got better. I think these are multi-system. So, it's really trial and error that people seek.
GR: So, we've got about two minutes left and I would like to try to get to two more questions in if I could. The first one, I know you could probably speak for a very long time on, but that was advice for patients. But more briefly, if you could, what would you say to the medical community about being more sensitive to this kind of stuff? Just listen better, or something else?
EM: So, I'll try to say it quick. In the book I say there's two problems. There's this issue of structural silencing. So structural silencing means the system's broken, which, you know, if you read Sanjay Basu's essays in my new journal, Science Politics, which we will talk about minute, you'll see the insurance system is broken, the way medicine is taught is broken. We really need to rethink what medicine in America means in general. But the other thing is that in medical school, you aren’t trained to work on complex chronic conditions. And students are so stressed out and worried just to pass their boards, they're going to focus on what's on the boards. And those are often very discrete, specific problems that are not using these complexities and, you know, these kind of difficult, you know, cases to disentangle. So, without the training and, you know, #MEAction is an organization that has this thing called Teach M.E., Treat M.E., which is trying to elevate this education on complex chronic conditions in medical schools. So that's really important work. And so, yeah, dealing with those two issues are critical.
GR: Well, I want to give you just a few seconds at the left to talk about the thing you introduced us there, but the thing that you're working on this effort with Science Politics, just tell us super quick about that.
EM: Sure. Partly because of my work on Covid, and long Covid, I launched a new publication called Science Politics. You can check us out at sciencepolitics.org. We work with experts, academics and policymakers, and leaders to help people write for the public about their important work, work that usually gets buried. We're a little bit like the conversation, but more solutions oriented. So, check us out, send me an email, sciencepolitics.org. And you know, let us know what you think, submit your work, we'd love to work with you.
GR: Well, you're working on some really important and difficult things to sort of wrap your your mind around your hands around, but I really appreciate you taking the time to talk with me. That was Emily Mendenhall. And again, her new book is titled, "Invisible Illness: A History, from Hysteria to Long Covid". Thank you very much.
EM: Thank you.
GR: You've been listening to the Campbell Conversations on WRVO Public Media, conversations in the public interest.
