Gabfest Reads: Chronic Illness
S1: This month, I am so pleased to welcome Meghan O’Rourke to Gabfest reads Meghan has written a really engrossing book called The Invisible Kingdom. The subtitle is Reimagining Chronic Illness. This is a book about a silent epidemic of chronic illnesses that afflict tens of millions of Americans. Often, the diseases that Meghan is writing about are poorly understood and frequently marginalized and undiagnosed altogether. It’s a harrowing book because of the subject matter, but it’s not at all harrowing to read. I actually found it to be kind of a page turner. And because Meghan is a poet and incredibly discerning reader, it’s infused with beauty and joy from literature about all kinds of topics. So Meghan, you’re investigating this elusive category of quote invisible illness, autoimmune diseases, post-treatment Lyme disease syndrome and now long Covid. Just tell us a little bit about how this began for you.
S2: First of all, thank you so much, Emily. This is one of the first times I’m hearing my book described by a reader, and it’s so illuminating, actually, because I think I really worried that this would be a book characterized by the narrative of chronic illness, which is recurrent and repetitive, right? So I did work really hard to try to give it a shape, and I’m I’m in a strange way pleased to hear that it’s a harrowing page turner. But the book began for me, I think in that experience of being in the grips of a malaise, I had no name for my experience of getting sick was one that happened slowly over time and not dramatically. I opened the book by comparing it to Hemingway’s description of going broke gradually and then suddenly. So it was a little bit like someone walking slowly into ever deeper water. I just didn’t feel great. I had strange symptoms, you know, headaches, brain fog, strange bouts of fatigue. But over time, that escalated into something that was a lot more like a roller coaster, up and down of good and bad health with surgeries and hospitalizations and the like. So that launched me, you know, the journalist in me, the the the researcher turned me into really a yearslong quest to understand more about what was happening to me in the hopes, of course, of coming up with a diagnosis, but also just in the hopes of finding a way to translate this very murky experience into terms that I and those around me could understand.
S1: You talk about chronic illness, you know, especially, I think, auto immune disorders as a kind of disease of our time. Why do you see it that way? You know, it’s like cancer is the illness of 20 or 30 years ago. Why do you think these kind of chronic illnesses are emblematic of our understanding or lack of understanding of illness now?
S2: The reason I contend that there are the disease of our time in the way that let’s say tuberculosis was a kind of representative disease of the late 19th century, right, where it was often psychologist and seen as an affliction that happened to beautiful souls, right? And there was a kind of popular cultural narrative around tuberculosis in ways that illuminated things about Victorian society. I think that these immune mediated diseases illuminate a lot about our society and the kinds of cultural narratives and stories we tell ourselves. These diseases really reveal that illness is not a solitary individual experience, so we all undergo right and we’re seeing this dramatically illuminated in the pandemic. But in fact, a kind of social experience and our immune systems we’re learning more and more are really responsive, of course, to environmental exposures. The food we eat, the the stress and trauma, all of these things can shape and affect our immune systems. The idea that an infection kind of can hit your body and should act the same way and everyone’s body’s the way germ theory taught us turns out to be, you know, maybe not quite right that in fact, the viruses and chemicals and other things encounter our bodies, but also encounter our genetic and personal histories and end up affecting some of us in very, very different ways. As again, we’re seeing with Covid, right? A mystery of Covid is that some 30 year olds before they were there were vaccines would die from it and others could be totally fine, not even notice they were sick. And then still, others might have a really mild case, but be unable to walk up and down the stairs months afterward because of long Covid. You know, I think these diseases are diseases of our time, too, because they basically they’re hard to see and hard to measure, and our medical system struggles with that. And they reveal to us how uncomfortable we are with things we can’t measure and with things that don’t resolve the kinds of illness stories we like to tell our stories of. Heidi, recovery or even kind of spiritual dissolve that ends with death. We don’t have a kind of gripping cultural narrative or easy way to talk about those conditions that recur and come and go and, you know, are systemic and vague and can’t be measured. We tend to immediately psychologies these conditions.
S1: Western medicine like solutions like diseases where you can check a diagnostic box and then there is a nice cure or a procedure you can do. And for the most part, you just didn’t have that kind of condition. And I wonder what conclusions that led you to draw about the whole way our health care system is structured and what it would take to really help patients manage and live with chronic illness.
S2: We have an incredible modern health care system that is amazing at solving acute problems, right? You can have a really terrible car accident and really complicated set of surgeries and come out pretty intact. You can have stage four cancer and get incredible treatments, so that’s not an acute problem, but it’s one that there’s a lot of measurement for. There’s medicine for. We know what to do. What our health care system is less good at are conditions that are systemic. So let by that, I mean, they might manifest in different parts of the body. Maybe there’s skin manifestations, maybe there is kidney manifestations, maybe there’s rheumatologic manifestations and those diseases, as you say, for which there’s no drug or treatment or really tidy evidence based protocols, right? For good reasons. We want evidence. We want to know exactly what to do. So I was really struck that, you know, I had a rheumatologist, a dermatologist, a neurologist. You know, I had nine doctors, each of them quite wonderful at various points, but no one of them was ever stepping back to say, OK, what is getting in the way most, even if we don’t know what’s wrong with her and even if we can’t cure her, how do we help her live her life as effectively as she can in ways that she most wants to? So I think what we need and what I call for in this book is a much more coordinated kind of care and perhaps the advent of centers that can treat autoimmune disease that can treat these immune mediated diseases that often go hand-in-hand in a more coordinated and holistic way.
S1: So in the absence of a lot of places like that? How did you find a doctor? Like, how did you just literally solve this problem of finding someone who was going to have this overall perspective on your condition and be the person you trusted to to help you manage it?
S2: You know, the answer is I never really did. I became a kind of detective and I’m a reporter and researcher, which is not to say that I can become a doctor and treat myself, but I could. Talk to a lot of people, find good doctors, and then when I talk to those doctors, kind of learn as much from them as possible and have them help me put together what the next steps would be and might look like. But it really took, you know, five years of this of just going from doctor to doctor to start to unpack what was going on and to get some answers. And one reason for that is that it turned out I had a host of different kind of simultaneous conditions, one of them genetic. I have something called hyper mobile Ehlers-Danlos syndrome, but also I have an autoimmune disease. And then it seems to have turned out, too, that I had an undiagnosed tick borne illness, right? So it took time to kind of unpack and almost in a journalistic researcher way, try to cross off different possibilities. You know, I spend a lot of time in doctors offices in New York trying to go to some of the best specialists there were, and I was incredibly lucky and privileged to be able to do that.
S1: Right, right. I mean, you also do spend a ton of money. I mean, tens of thousands of dollars, but also it’s like a significant fraction of your time as like a person with the full time job and a need to make a living.
S2: One reason I get really granular about this in a way that you know honestly is a little uncomfortable for me. But I try and one chapter about the contemporary health care system to really anatomies for the reader, how much time and how much money I’m spending, right? So if you think five days a month and you think, OK, you have 20 formal workdays, that was a quarter of my, you know, available time to work and earn money, right? And I, you know, taught as a professor at NYU, but I also made a lot of my income through freelancing. So I absolutely lost, you know, a huge chunk of my income. And when I got these doctor recommendations, they were often to doctors and specialists, you know, really top hospitals who had stopped taking insurance so that they might spend time with their patients. Basically, the nature of insurance is they want doctors to move people along really fast. And I tried to really, really dig into that because I knew that I was fortunate, even though I accrued quite a lot of debt. I was fortunate to be able to accrue that debt in a kind of bet that I would be able to pay it off later. Right. And a lot of people suffer alone because they don’t have the means in various ways to persevere like that. I was just I was willing to gamble. Hmm.
S1: There is a low point in this book where you really thought that you were going to die, and there are a bunch of moments where you use the metaphor of kind of reaching within yourself and thinking there was some pilot that was still lit and it was the core of you was like underneath the pain and all the discomfort and the stress and psychological burden you were bearing. And for me, as a reader, that was a really helpful metaphor because it was this idea that you had this essence of being a person separate from your illness. But I think also the title of the book suggests that you felt like you were entering this other realm, this kingdom of of the unwell. Essentially, how do you think about the balance there? I mean, you’re incredibly honest with reckoning, with all the toll. And I don’t want to be like romanticizing the idea that, you know your psychological determination is what allowed you to keep going and press on. But it did seem super crucial to me that, you know, you were just so fiercely determined to somehow struggle through this and and get better, if not all the way better than still better.
S2: Yeah, the book title comes from Sontag’s idea that illness is the night side of life, and we sometimes pass into it and then come back out of it. One of the most powerful features of this period of my life was that as much as I felt I was losing myself, my very sense of self and who I had always been, there was this little pilot light inside me that was like, something is wrong. And that was really important because for years doctors would say, Your tests look fine, you’re probably just a little anxious. You know, I was quite athletic. I, you know, I had a job, so I appeared like a very high functioning person who maybe was very high strung, right? And it’s an irony of illness like this that the more invested you get in saying, no, here are all the little problems, and here are the labs that maybe point to it. The more you look like a hypochondriac, right? So I credit that pilot light with keeping me going. But one thing I’m very careful about in the. Book is to say, you know, first of all, there were times when I stopped right there, just times when it was too overwhelming, too hard to dispiriting, to get hope up again and think I’ll try to explore this avenue. But you know, I try to be careful in the book to say I had the kind of support system that let that pilot light survive and keep me persevering, right? You know, a partner who believed me, I was very educated. I felt quite comfortable in doctor’s offices. I had a sense of how to present myself in a way that would try to get them on my side, even though I struggled with that so much. You have to have just incredible determination to live with a chronic illness, and in some sense, that’s really the subject of this book that I think I did not understand that before I got sick.
S1: Can you talk a little bit about the connection between the brain and the immune system? You talk about some experiments overseen by Ellen Langer, who’s a psychology professor at Harvard who works on aging and illness, and I was really intrigued by this work.
S2: Yeah, I found her work so fascinating, Emily and so challenge to because, you know, all this is in some sense, the hardest part of the book to write because I really struggled when I was sick with this question of, you know, am I somehow responsible for my own illness, right? Like something a lot of people will say to you is, oh, it’s probably stress as clear as stress plays a role in our health. But it wasn’t until a doctor said to me, Yeah, sure, it’s stress, but it’s likely the stress of an infection, not the stress of your everyday life. There’s some underlying stressor, making it very hard for you to get by and then all these other stressors become harder to deal with, right? So I fought for a long time against people who were like, Well, if you just relax and meditate, you’ll be OK. All right. So then when I get to Ellen Langer’s work, she’s this fascinating professor of psychology at Harvard, who works on aging and illness, and a lot of what she works on are studies that suggest that the mind really does play. And we could say the brain, you know, an important role in the health of your immune system and an aging. So in one landmark experiment she did, which is Colbert, she calls it the counterclockwise study. She monitored two groups of aging men, and in one group, they kind of went to a residency. I think for a week or 10 days are going to get the details wrong. But one of the groups was treated as if they were 20 years younger than they were. So they arrived. They have these heavy suitcases. No one leapt to their aid. They made them carry the suitcases like up the stairs. They then played music for them from the time in which they were 20 years, you know, were much younger. The other group they arrived there like, Oh, let us help you with your suitcases. They kind of kept them in the present day. At the end of the week, the first group that had carried its own suitcase and was listening to music from the past. They measured their different biomarkers, and they found that their sight and hearing had improved. They were physically stronger and they had more energy. There was this kind of wild study in the other group stayed the same. So she has done a number of studies like that. Another one is about people go into the cockpit of a fighter plane and they are told they’re, you know, pilots and suddenly their vision gets better because they associate, you know, fighter pilots with really good vision. So she and I talked and I said, Well, look, I mean, do you think this means that you can kind of sit down and think yourself better? And you know, she she was wonderfully complex on that question, and I think she believes you have to live within a certain number of constraints, right? Like if you go into a barn, you know, you get hay fever and then you’re like, I don’t, I’m not going to get hay fever. I’m not going to get hay fever. Well, you know, you’re probably going to start sneezing. So her her approach, which is really interesting, is to counsel people to find those triggers and avoid them, but simultaneously to not focus on and in fact, find ways to trick your brain into genuinely believing a condition of health that it may not have. The crux of her work is that you have to really believe the thing you have to really inhabit it in an embodied way. You can’t just think to yourself, OK, I’m going to try to imagine that I’m better. You have to actually feel better in order to feel better, right? So there’s a kind of paradox to it, but it’s something I have to say. I think about pretty much almost daily these days, like she resists the narrative of You can just tell yourself it’s fine and it’s fine. It’s a lot more complicated than that. It takes a lot more work than that,
S1: but it does involve a certain level of like denial, which I think totally,
S2: totally, totally
S1: difficult, right?
S2: Because it gets you very close to the like positive thinking and breast cancer, which, you know, I spend some time talking about the famous David Spiegel study in the 70s that found, you know, patients with breast cancer who had positive thinking had better outcomes. Well, no one has ever replicated that study, including David Spiegel himself, right? And so in fact, you know, it seems like some of the more simplistic cultural narratives we like to have, which is, you know, what doesn’t kill you makes you stronger or just do it right? Those that’s not quite right. Something is going on in the mind and body. But what it is and how we harness it and how we understand it is a lot more complicated than the kind of simplistic narrative that often wants to look away from the real suffering at the core of an illness. You know, would have it, which is part of what? I’m trying to get it.
S1: Mm hmm. I want to get your thoughts about long Covid. So you talk in a bunch of places in the book about how the fact that long Covid is affecting so many people means that there is a tension on these kinds of chronic illnesses and a kind of imperative to address them from the point of view of the health care system that I think you think is like. Icing and helpful. I wonder what we know at this point about the parameters of long Covid. I know you’ve written about this topic and the reality of it. I’ve also read about studies suggesting that in some cases, people report the same rates of long Covid like symptoms like brain fog, for example, whether or not they actually have a positive test result for Covid to begin with. And this is another potentially sort of mind-body connection. Or maybe it’s not. Anyway, I would love to get your thoughts on where you think we are in our understanding of long Covid.
S2: Yeah. The problem right now is that we lack the tools to really differentiate and discern the ways in which these symptoms, like brain fog and joint pain. Cetera might manifest, you know, in the patient with chronic Lyme disease versus the patient with myalgic encephalomyelitis, right? So one thing that Mount Sinai found at the post-COVID care center there was that a lot of patients with these long Covid symptoms had. It’s a manifestation of disorder known are known as Plotz, and this is characterized by drops in your blood pressure. When and when you stand your veins fail to constrict and set blood to your brain brains that can cause your heart to race and that can cause brain fog. So this was quite measurable actually in these patients, if you took the time to look for it, but not every patient necessarily had that right. Some patients had long term damage to their lungs. Some patients had other things. So I think we’re just on the very brink of starting to understand the long Covid. And because we don’t understand a lot because people with long Covid and after effects of Covid live on the edge of medical knowledge. There’s just this rush to psychologies it. There’s this rush to say, well, these patients have anxiety or other patients also have brain fog. Well, you know, all that may be true, but we’re trying to understand why and how and to really look at these different groups. And I think the sheer scope of the problem, plus these very good studies looking at biomarker differences tell us that something quite concrete and specific is going on and maybe actually a whole variety of things, including the fact that the SARS-CoV-2 virus seems to either trigger or sort of facilitate quite a lot of autoimmune activity in the
S1: body, as I think about like what is potentially a large rising number with these kind of conditions. What what can people do to avoid trudging from doctor to doctor and shelling out a ton of out of pocket payments like, I mean, are there any shortcuts? Yeah, maybe that’s an unfair question. But you know, you are one of three people I know have had this kind of experience. And you know, in the end, as you were saying, a course of antibiotics really helped you, but it took you a long time to get you the diagnosis that got you to that point. And I wonder if you look back on it, if you feel like there are shorter paths that yeah, yeah, I do.
S2: I don’t know. I mean, my first instinct is to say, I think actually the paths changing has to happen, not on an individual, but on a social and cultural level, right? We need a paradigm shift in how we view and understand the reality of these infection associated conditions with a lot of researchers who work on them, call them so that we’re not as patients always having to contend with the like, well, you’re probably just anxious or you’re probably just fine. So I think a goal I have for this book is to really open up a dialogue with medical professionals that they can understand where patients are coming from, right? It’s the degree that we go in saying, Well, maybe I have this, maybe I have that. It’s not because we are sure we have the answer, but we want to just start that conversation. I think so. Yeah.
S1: There are a lot of people in the world who are like basically well, and I think if you’re one of them, it can be easy to kind of forget about this or just for psychological reasons, not want to think about it too much. I mean, you mentioned how important it is that Jim, your partner believed you. Yeah. What is it other than merely believing you that, well, people can do to just be good friends and fellow citizens,
S2: validating listening are really big things. Very concretely, maybe going to a doctor’s appointment with someone. I often was alone at doctor’s appointments and I it was really hard, right? Because you’re upset or emotional and you have a lot of information to give. And I think sometimes just having had a person with me would have really, really helped me a lot emotionally. But I think really starting a conversation in which we understand that, that we are interconnected and that it’s not a societal burden that SARS-CoV-2 has brought with us. It is a societal responsibility that we all now have through the accident of having encountered this virus at this point in history and the accident for some people of having been really afflicted by it in an ongoing way. So I think we’re all in some sense, you know, as John, I talk about John dans no man is an island, you know, I’m a poet, so I love the poets. But it’s this beautiful passage, he wrote when he was sick with what seems to have been typhus, where he’s listening to the bells, you know, the church bells rang outside him and he feels incredibly isolated. But he has this vision in that moment where he really realizes, you know, no man is an island, right? We’re all connected. The bell tolls for all of us. So I think just as hard as it is having that in mind, you know, when we talk about how do we make this shift from pandemic to endemic thinking about immunocompromised people, right? There is a huge number of immunocompromised people in this country. And it was funny. My, my husband, my partner Jim was saying this morning, like on Twitter, people are just like, well, whatever, what did they do before? They should just go back to doing it and like, Well, no, we actually have the the responsibility of having a broader conversation about what this means and how to care for everyone within our society. You know, not by always locking down, but by rebels honoring that reality, right? I think the first step is at least honoring that reality and not pretending it’s not there.
S1: Meghan O’Rourke Your book is the Invisible Kingdom reimagining chronic illness? Thank you so much for being part of this, and I look forward to lots more interest and
S2: kudos for your book. Thank you so much for having me. You know, I love the Gabfest. It’s a great pleasure to be on it.
S1: Thank you. That’s our show for today. Gabfest Reade’s is produced by Jocelyn Frank. June Thomas is the managing producer of Slate Podcast and Alicia Montgomery is the executive producer. Follow us on Twitter at Slape Gabfest. We’ll be back with a regular episode of the Gabfest on Thursday, and another episode of Gabfest reads will drop next month. Thanks so much for listening.