The Invisible Kingdom of Chronic Illness | Crooked Media
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February 27, 2024
America Dissected
The Invisible Kingdom of Chronic Illness

In This Episode

Chronic illness is debilitating. But it’s not just the pain and dysfunction it causes, but the anxiety of not really knowing when it’ll strike — or get worse. Abdul reflects on the ways that science has been diverted by the goals of the healthcare industrial complex away from answering questions at the edge of chronic illness. Then he sits down with author Meghan O’Rourke, author of Invisible Kingdom, a book about the experience of living with a chronic autoimmune disorder, about her experience, how it changed her, and what she wishes more people understood about it.

 

TRANSCRIPT

 

[AD BREAK] [music break]

 

Dr. Abdul El-Sayed, narrating: A judge in Alabama rules that frozen embryos are children. Florida Surgeon general plays down the risk of measles amidst an outbreak. Epidemiologists estimate that Israel’s destruction of Gaza could take another 85,000 lives in the next six months alone. This is America Dissected. I’m your host, Dr. Abdul El-Sayed. [music break] Think about the best conversation you could have in ten minutes. What would it entail? What would you discuss? How much information do you think you could actually communicate? Now step back. Consider the fact that the ten minute office visit has become the standard for the way most health care is delivered in this country. That means that people many times with multiple ailments, what doctors call problem lists, several diagnoses long, are trying to fit conversations about life and death into ten measly minutes. That’s become America’s new normal when it comes to health care. It’s become what we all just expect. Now imagine that you’re experiencing excruciating pain that comes and goes. You don’t know what’s causing it. You can’t predict it. It’s not life threatening, but it makes you feel like you want to die. You’ve been having it for months and you want answers. Is ten minutes really enough? Put yourself on the other side of that ten minute conversation. You’re a physician with a packed day, you’re five patients into your day, and you’re already running behind. Over lunch, you’ll try to pare down that ever growing list of messages in your patient portal. And you’ve got this patient that’s got a set of symptoms with a differential diagnosis, doctor speak for the list of things that could be causing this, a mile long. And they want relief. And you know that in these ten minutes, you can’t give it to them. Frustrated by this interaction, you walk into the next one and the next one after that. This system, designed mainly about generating RVUs or relative value units, a measure of physician output designed to equalize across various kinds of health care. It doesn’t dignify either patients or doctors, but it’s particularly bad for people whose ailments don’t fit inside a usual box. People whose ailments sit at the outer edge of what we understand about what makes a body sick. And why don’t we know it? Well, a lot of that goes back to the way that science is done. Remember, science is a process designed to take bias out of the pursuit of knowledge. But there are two places where bias tends to sneak in. At the beginning of the process and at the end. At the beginning, bias shapes the questions we even ask, and at the end it shapes the way we interpret our study results. But while there are some awesome scientists out there doing great research, driven mainly by the pursuit of knowledge itself, a lot of the scientific pipeline is girded to the medical system we have. The one built around creating neat and tidy checkboxes that can be easily built and monetized by the behemoth corporations that make up our health care system. The more monetizable, the better. It’s why so much attention is given to diseases that require regular treatments throughout folks’ lives. Auto immune disorders don’t fit neatly into a single ten minute office visit, nor are they diseases that we understand much about. And yet one in ten people are affected, and that number is rising every single year. For millions of people who struggle with them, they can be deeply debilitating. But for many, particularly those whose illnesses aren’t easily diagnosed or for which there isn’t much treatment, part of the agony isn’t just the pain or dysfunction, it’s also the anxiety and lack of knowledge. It’s the fact that you know it hurts but don’t know why or how long or where. And that, all that is exacerbated by the fact that you don’t get enough time with your clinicians, nor do your clinicians have the space or ability to really work through this with you. That was today’s guest’s experience, too. For nearly a decade, Meghan O’Rourke suffered a series of undiagnosed illnesses, and with them, the indignity of a health care system not designed to care for people like her. Her New York Times bestselling book, Invisible Kingdom, is both a reflection on her experience and a form of outreach to a quiet, invisible kingdom of people suffering in silence, just like her. I wanted to have her on the show to share her experience, reflect on what it’s like being caught in the gray area of science and medicine, and what she wishes people suffering with undiagnosed chronic illnesses and their providers understood. Here’s my conversation with Meghan O’Rourke. 

 

Dr. Abdul El-Sayed: Okay. Are you ready to go? Are you recording? 

 

Meghan O’Rourke: Yes I am. Yes, I’m recording and I’m ready to go. 

 

Dr. Abdul El-Sayed: Okay. Can you introduce yourself for the tape? 

 

Meghan O’Rourke: Hi, I’m Meghan O’Rourke, the author of The Invisible Kingdom: Reimagining Chronic Illness. 

 

Dr. Abdul El-Sayed: Tell me what it meant to you to to write this book now. You know, before you answer the question, I just want to say that, I have written a couple, two very different kinds of books, and the process is, you’re putting something out there, and you do it because there’s something agitating inside that you you really want to put in words. And in some respects, you write for other people, but in other respects you write for yourself. So what did it mean to you to to write this book and and to get it out there in the world? 

 

Meghan O’Rourke: That’s a great question. So I’m a professional writer. I’ve I’ve been a writer for all my adult life. Um. And I do think that on some really personal level, I, I do, I do this profession because I find it meaningful to step back from the kind of hurly burly of life and reflect and shape experience into nuanced stories of the kind I often don’t see in the media. And so as a writer, I’m really drawn to these subjects where I feel that we’re telling ourselves a story culturally, that feels to me to be too simple and to be missing some complexity. So there was that immediately. But on an even more personal level, I had this very strange experience of getting sick and having that illness go unrecognized by the medical system for more than a decade. And at some point, that autobiographical experience just began to feel so incredibly lonely. And I had a moment of thinking, if I’m going through this and I’m, you know, highly educated in an urban area, you know, upper middle class white woman, think about the millions of people in America, in the world who are having similar experiences of becoming mysteriously ill and being met with a kind of curious incuriosity. Um. And I I really wanted to get that experience down, because I think that people who who believed I was sick thought that the suffering of the sickness was the hardest part. But in fact, the hardest part was having the sickness be rendered meaningless by virtue of the fact that no one believed me. I didn’t have a language, a container, a story to talk about this kind of amorphous illness and the symptoms that came with it. So I think those were really the reasons I wrote the book to to connect with what I presumed was an invisible kingdom of people out there um who were like me, that is lonely as I felt we were actually all out there somehow. And if we could just kind of name the problem, we could come together and start to solve it. 

 

Dr. Abdul El-Sayed: I really appreciate that. You know, it’s interesting because I in some respects, you write to give clarity to your own thinking, but you also write because you hope and aspire to give clarity to others. But there’s also this um harmony in being able to find folks who are thinking and feeling the way you do. And I think, you know, nirvana as a writer or as a speaker is when you’re able to help somebody find the words to explain what they’re feeling. And for a moment, you all are sitting in the same wavelength of experience. And it’s just a it’s a it’s a it’s a really cathartic feeling. Um. And I could imagine all the more so because of the way that you describe your illness as as almost taking away a sense of um you’re mattering and your experience mattering. I want to step back because, you know, the experience of illness is kind of weird thing. I, I, I try to identify the time at which I realized that, um or when I first became disembodied. And what I mean by that is that when you realize that you are kind of a conscious that’s independent of your body, I think when you’re you’re a kid, you know, this is going to sound obvious, but it’s I am me, I am this, this, this thing, and that thing is me and it for me it really wasn’t until I uh sustained a sports injury when I felt the pain of the injury and then realized that I, I was having an emotional reaction to my reaction. 

 

Meghan O’Rourke: Mm yeah. 

 

Dr. Abdul El-Sayed: And at that point I was like, wait a second. Like, this is weird. Like, I’m this body is not actually what I am. It’s it’s the container in which I live. But it, you know, it’s sort of separate from me and I, I, um I that became a lot more clear, even as, like, I started to play more sports and, you know, you do things like, I’m going to stretch and I’m going to like, be able to be more limber or I’m going to lift weights and I’m going to gain muscle and strength, or I’m going to train and I’m going to get faster. And you realize it’s just like, okay, well, part of that is the your body itself and it it does certain things and it doesn’t do other things. And then part of that is like this mental sort of aspect of like trying to work on your body. And I would imagine that an illness like this, where you don’t really have, you know, what I’m describing is almost a certain like recognition of non mastery and then a process of attempted mastery. But when you can’t really you can’t really explain what your body is doing. Nor can people who ostensibly are experts in bodies explain what your body is doing. For you, I give this really big wind up to ask, like, when did you start to realize that something was like really, really wrong? Like that, that there was something beyond the usual, I’m sick and my sickness is going to fit into some pattern, and somebody who’s an expert at bodies is going to tell me what it is, and there’s going to be a neat answer here. When did that really dawn on you, and what were the set of experiences and emotions– 

 

Meghan O’Rourke: Yeah. 

 

Dr. Abdul El-Sayed: –that really drove your thinking at the time? 

 

Meghan O’Rourke: That’s such a great question as, I love the wind up, I think it sets up the question in the ways it needs to be answered. And I have two answers. Two parts to the answer rather. One is that, as I describe in The Invisible Kingdom, I was sick for a long time without quite realizing that I was sick. I had gone to so many doctors to say, I just don’t quite feel like myself. Um. Right? To pick up your thread and only to have doctors say, well, you know, all your labs look normal. Maybe you’re anxious, maybe you’re stressed. So I had really internalized this idea over time that this kind of changing experience I had of the world was maybe either slightly imagined or I was putting too much stress on it. Um. And there was a quite shocking moment where I was driving home. I taught at the time, I taught a creative writing class at Princeton, and I drove home with a friend. I was driving, and I looked over at him and he was a long term colleague. I had known him for more than a decade, and I had no idea who he was. I didn’t it wasn’t just that I didn’t know his name. I knew I knew him, but I really couldn’t understand who he was in relationship with me. There was like a whole category of experience that was no longer present. And I came home that night and I said to my husband, I know we’ve been wondering if all these strange aches and pains and odd symptoms really are anything but, and maybe it’s just part of getting older, but isn’t this weird? Like, isn’t this something unusual for someone who’s 35 to experience? And he kind of got a shocked look on his face and was like, yes, that’s something is really unusual. So there was that first moment, and that helped set me on the path of really seeking more answers and going to more experts. And then there was another moment where I was um in the office of a really wonderful doctor of women’s health, and for the first time, and she was someone I saw shortly after this moment of not understanding who my colleague was. For the first time, I had a physician say to me, I believe something really is wrong. And that was she immediately said it and she said, and I highly suspect you have some kind of autoimmune disease, including, but maybe not limited to autoimmune thyroiditis, and that’s driving some of your symptoms. We have to see what your labs look like. But let’s look at this. And, you know, sure enough, I had that disease. I had some other markers. She was like, I’m going to give you medication and we’re gonna we’re gonna treat you. And you should be feeling a lot better in six weeks. Six weeks later, I was in her office. I felt moderately better, but not noticeably better. And that was when we started to have a conversation about, well, an autoimmune disease is something that might really permanently change your life. It might leave you feeling 80% at best. It might mean reshaping your identity. And by the way, it can come and go and different things can trigger it. And maybe you need to stop eating wheat. And really, in that office and as I walked out, I thought, okay, this is not a this is not the kind of quick fix that I’ve been led to kind of believe, you know, we so often can offer people. Right. Um. This is something else. This is a different kind of category of disease. And in fact, it turned out there were other things going on that we, she and I didn’t even realize at the time. But that moment was the moment of walking through the portal into a different kind of experience of health and illness than than that which I sort of simplistically had grown up with. 

 

Dr. Abdul El-Sayed: I, I really appreciate there’s a there’s a profound contrast in that moment. One of the things that you’re taught med school is that naming a thing is a narrative. So if I say you have cancer, you can imagine a world where this story plays out of the cancer experience, right? You can imagine, like the loss of hair, which is what people stereotype as going through chemotherapy and multiple uh uh rounds of treatment. And then, you know, being cancer free for some time. And then all of a sudden the cancer coming back, like these are all permutations of a, of an adventure. And I don’t mean that that term lightly, but, you know, a journey, um–

 

Meghan O’Rourke: Yeah. 

 

Dr. Abdul El-Sayed: That people can ascribe to cancer. If I say you have a cold, that’s a different narrative. It’s okay. You’re going to be kind of stuffy and feel kind of crummy for a couple of days, and then a couple days later you feel a little bit better, and then after that you’re going to feel fine. Um. Covid is a narrative, but what’s interesting is that those stories tend to they tend to end in a certain kind of way. And there’s the clarity of that narrative is actually an endpoint. It’s like a sort of sense of control over the outcome that you give to people in a diagnosis. The the challenge with what you shared is that this doctor, uh who by all accounts was a caring, um thoughtful, engaged, curious physician, gave you a diagnosis. And then, in some respects, the narrative you came to expect was, like, dashed by that diagnosis. How did that contrast play out in your mind, like after those six weeks when you started to realize, okay, I, you know, I’m in for something that’s very different. And even though I had thought that this naming of this disease gave me some sort of mastery over it, what I’m starting to realize is actually, I’m not going to have that. Walk us through that moment and what goes through your mind in a moment of like lack of clarity like that? You’ve you’ve been experiencing all these symptoms. You think it’s going to go away. This is the moment of catharsis. And then not not quite. How does how does that how does that play in your mind? 

 

Meghan O’Rourke: Yeah, well, to really answer this question, I wrote the book, [laugh] so I’ll try to take a very short, uh which is to say I could give you a very long answer, and it’s a complicated answer, but um I will say that what I realized coming home from the doctor’s office pretty much that day, was that there was going to be some kind of identity shift, right? I did intuitively understand that the diagnosis was no longer the end point. It was now a kind of beginning or even actually not a beginning, a point along the way, a kind of marker, and that I was going to have to start to build a new kind of story and a story that went beyond the diagnosis. And I think in a sense that that’s the moment I really began thinking about this book, The Invisible Kingdom. I didn’t know it at the time. I couldn’t have said, oh, now I’m thinking about a book. But I immediately became really interested. It’s like you describing having a reaction to your reaction. I began having a reaction to my own reaction and thinking, this is different. This is not what, you know, an easily measurable, easily treatable disease like those I’ve had or injuries I’ve had in the past was like. I’d had surgeries, you know, go in, they fix the problem, you go home, you recuperate, then you’re better. This was different. Um. And I began to start to think about what it meant to have both an autoimmune disease and what the symbolism of an immune system turning on itself did or didn’t mean. And I began to think about chronic illness and this idea of, well what kind of story is out there? Or is there a sufficient story out there about chronic illness, right? In a kind of quick fix culture that this isn’t, this goes this aspect of our culture goes far beyond medicine, right? Our whole culture in America, at least, is about get in there, just do it. Whatever doesn’t kill you makes you stronger. Like you suffer through it. You fix it, you make it work. And in this period of time, by the way, I was really, really sick. But I would like I had been a runner for a long time and I would drag myself out of bed and try to go running pretty much every day. And it would make me. It made me sicker and sicker. It didn’t work, but it very it would just say that the process of coming to understand that I was going to have to start to tell myself a new story was a slow one, you know, I understood I had to tell myself that new story. But what the new story was going to be, my actual acceptance of it, the new identity that I was going to build in response to having a diagnosis. All that took a lot of time, and there were many, many steps along the way, you know, including, by the way, I’m not just a sick person. Right? And and how do I live with the kind of uncertainty in my life? Um. How do I make a life? How do I plan? How do I build a family? How do I continue to work? None of which I could really do at that time because I was so sick still. Um. But that it was a kind of entering, like a murkier world rather than a world of clarity. And yet there was a clarity and acknowledging for the first time that murkiness that in the despite this technological age we live in, where we know more than ever about the body, I was somebody whose body was at the edge of medical knowledge at that point. 

 

Dr. Abdul El-Sayed: Yeah. 

 

Meghan O’Rourke: And that’s what I began to feel. 

 

Dr. Abdul El-Sayed: You know, it’s it’s interesting. So I’ve got a six year old and um, you know, I talked a little bit about recognizing my reaction to my reaction. And uh, I, I had cut myself and it was, it was, it was bleeding. And she looked at me and she says Baba you’re not crying. I was like, I know, um she’s like, why are you not crying? Doesn’t it hurt? I said, yeah, it hurts. She’s like, okay, but but but when I get hurt or I get cut, I cry. And I said, Emmalee you cry because it hurts. Or do you cry because you think it’s going to keep hurting? 

 

Meghan O’Rourke: Mm that’s a great question.

 

Dr. Abdul El-Sayed: And it was a moment of recognizing that, you know, I think about getting injured now and it unfortunately doesn’t happen all too uncommonly. But [laughter] there is there is this anxiety that comes out of, okay, how long is this going to take? And am I fully going to regain function? And so, so much of what we characterize as pain is the fear of loss of function. And then the loss of control or at least knowledge about the future. And so much of what I really appreciated about your book is that you dissect that set of feelings in a really important way, and it’s almost like you and not I don’t want to say you made peace with it. It’s that, you know, peace is not the right term, but it’s almost like you set you went. You realized this is not a battle. This is going to be a long, protracted war. And war may not even be the right analogy because it doesn’t um war implies that there’s a winner at the end, or at least, you know, one would think that there would be a winner at the end, although one could get very philosophical about whether anybody wins wars. But um. 

 

Meghan O’Rourke: Right. [laugh]

 

Dr. Abdul El-Sayed: But but this notion of a, this is a new normal. And I have to get comfortable with the lack of knowledge of where this is going. I wonder, you know, as you think about the relationships you were hoping to build with other readers. How much of your experience that you shared was about trying to get at that question of what do you do with the implicit anxiety of not knowing? 

 

Meghan O’Rourke: It’s interesting. I’ve been thinking about this a lot because I’m writing something about hypochondria right now, which is a term that’s been replaced in the DSM by illness, anxiety and other terms. But um I think that I I well how can I put this? I think it became very clear to me that to really be present for what was happening in my body was going to mean a kind of radical rearranging of the of the furniture in my mind, of of all these received ideas that I had about having control over my life, you know, working hard and getting the outcomes I wanted. You know, I was pretty young when I got sick. I mean, I was sick in my 20’s then I really got the diagnosis in my early 30’s. And but I had lost my mother, um who who died at the age of 55 from colorectal cancer pretty suddenly and surprisingly, um I mean, not suddenly. She lived with it a long time, and I I think I already knew that that life doesn’t quite go the way we plan it to, to say the least. And so I do think that part of what I really wanted to do in this book is carve out a space where those of us who have lived in this invisible kingdom can actually reflect on some of the really important philosophical and existential questions that come with being ill, in a way that I found very hard to do before I had the diagnosis, or when I was with um pe– my physicians, partly because those encounters were so charged with my own desire to be believed, my own desire to be recognized and validated. It took so long to get that recognition and validation that once I started to understand, okay, I have these diagnoses, I am sick, but I’m also alive. I felt kind of ferociously that I wanted to lean into that space and reflect on it, because the ability to reflect on it had been almost taken away from me by science’s inability to recognize what was wrong with me. Um. And so I think first and foremost, I I wanted to try to write about the ways that although we absolutely need medical science’s objectivity, it’s desire to measure, its desire to name. There’s a feature of experience that is subjective, that changes day to day, hour by hour, minute by minute. You know, you catch me on a day where I’m having a lot of symptoms and I feel that sense of, ugh I don’t control anything. Like, I just wanted to play in the snow with my kids. And why did that trigger this reaction? And, ugh maybe I’m really sick, and this is so scary, right? And then I have to kind of talk myself down from it. So this is a whole part of experience that’s barely talked about in the medical, in the medical encounter. Um. There’s not time, there’s not space, there’s not and so I I wanted the book to contain that for for those of us who live in that world. [music break]

 

[AD BREAK]

 

Dr. Abdul El-Sayed: Part of what I think drives most people in medicine is this idea that you can solve a problem for someone, and that’s a really loaded um set of aims and intentions. And doctors, health care providers get frustrated when patients don’t fit into that box. And there’s a lot of different parts of it. And because doctors are are motivated or providers generally are motivated by see a problem, solve a problem, move on. We’ve allowed a health care system to be built around that model and monetized around that model. And there are a lot of places in the book where you demonstrate just how broken that model is. I want to ask you, you know, big picture, what was what was your best experience with the health care system, the things that went really right. And then what was your worst? 

 

Meghan O’Rourke: Well, interesting that you framed it this way, because I would say that one of the most important encounters I had took place years before I got a diagnosis, and it was with a neurologist, young neurologist. Uh. I’d never seen her before. I was having very strange, um neurological symptoms that felt like little, like pinpricks all over my body. And I had no idea what this was. No one had, finally I end up in her office, and she basically said to me, I don’t know what’s wrong with you. I’m not sure I can help you. In fact, I’m pretty sure I can’t help you. But I believe you. I suspect you have some kind of small fiber neuropathy. I can put you into some. We can do some tests, and it will help our research, but it won’t let me help you. But no matter what and it might not be that because there’s these aspects of it are not quite similar to that. But most of all, I believe you and I’ve seen other young women like you, and I can’t tell you, I always bring up this example because she did not, nothing ever transpired. We I didn’t end up doing the test at that point. She stayed my neurologist for years. She’s amazing. But the work of naming, validating, recognizing and kind of containing, creating space for us both to be held in that container of not knowing. It’s like I felt giddy on the way home. I felt totally changed by this encounter because I felt I felt human, right? I felt that I’d had two humans had talked to each other. Um. And I do think that that’s just it’s really not understood how profoundly important that is, maybe especially in the experience of chronically ill people, right? Where we’re we’re living with this day in and out. And so to have that recognition matters. Um. So that went well. I, you know, I think there were other moments that went really well, and they they all have in common this theme of of listening and caring and believing a little bit and believing that there might be things about my experience or my body, or what was happening in it that couldn’t be picked up or hadn’t been picked up on tests. Did you also ask what was the worst experience? 

 

Dr. Abdul El-Sayed: Mmm. 

 

Meghan O’Rourke: Well, there’s a couple, but um I think one of the worst, ugh you know, one of the worst was when I was really quite ill, and I, my insurance changed. Okay, this is part of this broken healthcare system. I changed jobs, my insurance changed. I left my GP of many years. Wonderful, empathetic, you know, always kind of believed, even if we never found anything wrong with me. Um, saw this new GP and I was really not feeling well, and I said as much and he said, well, let’s do some tests, maybe something’s going on. And basically everything came back looking totally great. And he, I was a little low on iron but within normal. And he basically was like, I think you’re just anemic from having your period. So I don’t think we should really worry about this. And I was, this is on the phone. And I said to him, but I’ve always had my period and I’ve never felt like it was like I’ve really gone off a cliff. Something has gone wrong, and we just couldn’t talk to each other. There was no time. There was no ability to pursue. There was no desire to pursue it. And we didn’t know each other. We didn’t have a relationship. And that’s kind of what stranded me there, being really sick for about a year before I kind of mustered the courage to then go see another doctor, because of course, as a patient, many of us really see the doctors as experts. So when the doctor says this to me, I’m 30 years old, whatever I am, I really took it seriously. And I thought, I’m imagining this. Something’s wrong with me. I am complaining I shouldn’t pursue this. So what’s can be dangerous about these encounters or complex for the patient is is how much the words, even brief sets of words really matter to us and kind of shape our shape our story. 

 

Dr. Abdul El-Sayed: Yeah. I um, there were a couple things in your response here that I really just wanted to pick out, because I think they’re just so profound. I mean, the notion that one of your worst experiences came as a function, not of a, uh a choice to change a provider patient relationship, but instead as a structural feature of a health care system. 

 

Meghan O’Rourke: Absolutely. 

 

Dr. Abdul El-Sayed: That tears you out of that relationship as a function of who’s paying for health care because you got a different job. And we don’t think about the role that those structural features um bake into our experience with physicians. But they matter quite a bit. The other, you know, is, is this this idea of being believed, but also having an honest arbiter of the science. Here’s the thing about it is, like science is the best tool we have for uh knowledge in, in um, you know, in, in human kind it is like, really one of the greatest um systems of thinking, inventions, uh that, that we, we have. The thing about it, though, is that we mistake the power of the tool for the outcomes of the tool, and we assume that because science is so powerful that science has answered everything, even though for the most part, science offers us frameworks that we interpret within. And, you know, in, in medicine, one of the things that, you know, hits you pretty quickly from like day one of medical school is that there’s just a ton we don’t know. I mean, I remember sitting in my uh embryology class being like, it is a miracle that all that that humans [laughter] get born in the first place. Like it, truly a miracle. 

 

Meghan O’Rourke: Totally [laugh]. 

 

Dr. Abdul El-Sayed: And like, we’re we’re understanding all of the odd cell signaling that gets cells to to turn and curl just so like to give us, you know, a functional body. And we understand what happens when that fails. The reality of it is most of the time when it fails, you just don’t have a pregnancy to begin with, right. And sometimes when that when it fails, it fails in a way that can continue to sustain human life. Um. But but all of this is to say that I think when we get it wrong, whether it’s in a patient interaction or it’s in public health, generally, it’s when we overinterpret what we think we know and we offer a set of answers that are actually what we call off data inference, meaning we have a framework. We’re going to fit someone tightly into that framework, even though they may be at the very edge of what we what we think we understand, rather than having humility about what science can, can actually answer. But the other part of that is also, you know, you’re you are a woman. And in the way that our archetypes, about how we think about pain and how we think about, uh disease play, I want to ask you. I mean, how much more likely do you think you would have been to be believed if you didn’t present as a as a young white lady? 

 

Meghan O’Rourke: Yeah. You know, I’ll never there’s part of me that as a writer that’s a journalist. So it’s a little bit similar to science. I like data, I like evidence, I like facts. So there’s part of me that will never I can’t fully answer that question. I don’t have the data for it, but it certainly was my um intuition that my being young and looking “fit,” quote unquote, [laugh] um to my physicians led to my being dismissed. That the words I was saying did not translate into and what do I mean by that? That often what physicians, especially ones I was meeting for the first time, focused on was that I was slim. My cholesterol looked great, I didn’t meet obvious categories of problems, and I had a really high pressure job initially when I first started having mild symptoms. And so that probably therefore I was anxious, right, that I fit into this archetype of one of the so-called worried well, this is a term that will be here, you know, in sociology to describe people who are actually well, but are worried maybe something’s wrong and are participating in, you know, and it’s an interesting conundrum in a kind of culture where we can prevent and test more than ever. Right? We we can look inside our body. So maybe we should look inside our bodies. And sometimes people fixate on this. Anyway, but but also this legacy of hysteria, right? This idea that the body is speaking the stress of the mind or the trauma of the mind felt very present in every doctor’s office with me. And so when I was writing the book, I began to really research this and try to find data to describe, if not, what I could know about my experience, that what we knew about others. And, you know, as you see in the book, there’s quite a lot of data showing us that, you know, although medical science and I agree with you infinitely that science is one of the best tools we have for knowledge, although it aims to be, you know, objective and fair, the practice of it is not always, right? And we bring biases. We all bring our biases into all spaces, and and medical science brings biases into the the room. And that led to the fact that it was hard. It is, we know we have data that women are just less likely to believed about their be believed about their pain levels, um about their their medical history, about subject so-called subjective symptoms like fatigue, which often can signal a real problem. So, you know, that that was in there in the mix with me. And it became pretty clear to me pretty early on, and I became really conscious of trying to present myself as being very rational and reasonable. And and remember very vividly a rheumatologist describing me as a patient with a pleasing affect. He dictated his notes in the as I was sitting there, and I was like, yes, I have like persuaded him that I’m reasonable. Right. But that’s a really complicated set of kind of reactions to reactions and, and, and trying to we often, I think as patients walking into a room or people with illness walking into a room have to think about how others are going to respond to us in that medical encounter. 

 

Dr. Abdul El-Sayed: You know, it’s it’s a really important point. And, you know, two things. Um. One is that as much as, as as a woman, um you fit into a stereotype about what you were likely presenting with, um you know, you can also imagine a circumstance where uh you code as upper middle income, uh you have a high paying job, you had insurance. And so your um, your visit was being reimbursed at a respectable rate. You know, I ask, how do you think your experience might have differed if you hadn’t had those privileges? Right? Even as um, privilege took away or you had circumstances that took away privilege in that encounter um how much do you think your experience might have differed had you, you had to worry about some of the other uh ways in which you could be discriminated against by the system?

 

Meghan O’Rourke: Yeah. Yeah. I’m so glad you asked that question. And because we do know that the system discriminates against people of color, people, you know, um if there’s language barriers, also there’s there’s a very basic also access to care issue in rural areas. So the reason I wrote this book was because I thought if this was my experience, and I actually had quite a lot of privileges and tools, right? I was a journalist. I really knew how to talk to people and get information and get referral. I really knew how to work the system at a certain point, I didn’t go in knowing that, but I had the tools to learn how to do it. Um. And it’s very clear to me that that, you know, I got mostly better, right? Uh. Better is a complicated word. I still live with chronic conditions, but I went from being someone who’s who in essence felt that that the promise of my life had disappeared and was no longer accessible to me to now feeling I have an incredibly rich life full of, you know, my kids, my work, I’m you know, I’m living a rich life with limitations. I am only living that rich life because I persevered so hard. Right? That’s not quite English, but I worked so hard to keep getting answers um and one of the people that I interview in the book, um who was the former head of the Permanente Federation, I think that’s what it’s called, said to me. I asked him this question. I said, what if you’re not me? You don’t have, you know, really good insurance. You don’t you can’t take many days off from work to go sit in a doctor’s office and wait to be seen? What happens to those people. And I will never forget what he said. He said those people suffer alone. They fall into the cracks and they suffer alone, and we don’t know how to help them. And I wrote the book because of that. You know, I wrote the book because I thought, I can write the book, and there are people who who didn’t get to the end of their story, um or the place in their story where they could reflect in the ways that I can. So we we really do need to kind of name that and come together to think deeply about how to change that fact. 

 

Dr. Abdul El-Sayed: I really appreciate that perspective. Um. A couple weeks ago, we had a uh pediatric hematologist who lives with sickle cell disease, on the show. And we talked a lot about the other way that science can be biased, which is in the questions we ask in the first place. And we talked about how we interpret what we find. But there’s also this question of of who’s diseases we pay attention to. And, you know, as we think about the, the set of um diagnoses that you were ultimately given, these are largely autoimmune uh disorders and autoimmune disorders affect, you know, four and five patients are women. And I want to ask you, you know, as you think about where we pay attention, the spotlight that we actually do shine on the set of illnesses, it’s rather clear that we just don’t know as much about these illnesses, about what causes them, about how to treat them. Um. Then then you think we should. And I want to ask you, how much of that do you feel like is a function of who’s diseases we pay attention to in the first place? 

 

Meghan O’Rourke: I think there’s two answers to this question, and I think the first is about the function of whose diseases we pay attention to. It’s very clear. And I mean, it seems quite clear, I lay out in the book that, you know, we don’t pay as much attention to diseases that are experienced by women. Um. We both know less, and we trust women less to report on their experience. Um. We just understand less about women’s biology. We have done a lot of testing on male lab animals. Right. But I think there’s a second piece. And this is about this idea that you brought up, which is larger which is almost a kind of like ontological idea, which is, what questions are we asking and what questions are we not even thinking to ask? Because there is a paradigm of thought in place that we arrived at that looked like scientific progress, that looked like knowledge, and was, but perhaps turned out to be limiting our ability to see certain aspects of human biology and experience. So what I mean by that is that one of the great moments in scientific history is the advent of germ theory, right? The moment when we start to understand that many diseases are caused by distinctive pathogens that produce very similar responses in people and can be described by similar sets of symptoms. We also around, you know, not long after we really develop an understanding of germ theory, start to be able to measure more than ever. These two things come together to really form a kind of concept of disease that was quite dominant in the 20th century, where there were what were called specific disease entities, and they looked really replicable body after body. Right. That’s one of the definitions. That’s one of Koch’s postulates is the replicability of of how a pathogen behaves in the body. But as I think Covid has really dramatized to us quite vividly, it’s turning out to look like pathogens, the way people respond to pathogens can be more variable than was at first thought. And that in some subset of people, the encounter with infection can trigger a kind of long standing immune response that we still don’t fully understand. Right. Is it is it autoimmune? Are they um, you know, rampant inflammation where we’re looking at long Covid, people are trying to study it, there’s still no clear answers. Um. But a lot of clues. So so there was this kind of paradigm about infection associated illness that was in place for a long time that led people not to ask the question of well why are some people saying after they have a virus, hey, I really don’t feel good for a long time. And in recent years we’re seeing suddenly a lot of science show that, oh, actually, people with MS do seem I mean, people who have Epstein-Barr virus, there does seem to be a connection to some subset of those people developing multiple sclerosis, right? But these questions either weren’t asked for a long time or were sort of dismissed for a long time. And so I do think that’s part of why this category of disease, including autoimmune disease, that I talk about, is, as one researcher put it to me, about a decade or two behind diseases like cancer, which we can really measure and look at more clearly. 

 

Dr. Abdul El-Sayed: I really appreciate that. So it’s it’s almost like a lack of curiosity about the less common variations of an event, you know, for a long time, you know, in in medicine, you’re sort of taught the test case or the, the usual case. And so much of what is important when you think about something like an autoimmune disease or [?] told a different way, the experience of your non 70 kilogram man, which is the the functional median [laugh] patient, these are where most of the scientific breakthroughs and so much of the pain and pathology sit. And if you’re uncurious about them, uh you miss out on the opportunity. And that lack of curiosity can manifest itself as just a lack of scientific curiosity, or it can manifest itself as a lack of interest in the experiences of people who don’t look like the 70 kilogram man. And those two things become self-reinforcing. You mentioned feeling a lot better, and I’m really grateful to hear that. Um. I want to ask you, you know, as a last question, what would post Invisible Kingdom Megan O’Rourke go back and say to that young woman sitting in that room with that neurologist, about what her experience would be? 

 

Meghan O’Rourke: I always get a little teary when I get that. I’ve been asked a version of this question once or twice before. I find it a really profound question um that I can’t adequately answer, but I think the number one thing I would say, and the reason I wrote the book, is that she should trust her experience. And she has the right. She has the the human right really to ask for help from the medical system in trying to diagnose, treat, manage that experience. Um. And I think so many of us feel, um you know, a bit broken by the illness itself, right? A bit thrown off by that and then further broken by that encounter of being either disbelieved or or told everything’s fine and and which we want to which we want to believe, but then realizing over time, no, no, no, we know something’s wrong. So I think I would say, you know, trust in yourself and also as alone as you feel, you’re really not alone, for better and for worse, but that there is something quite powerful about recognizing that illness is not something that isolates us. It can be something that brings us together in conversation. And I’ve really felt that since the book was published, just talking to people, hearing from people, and seeing especially being able to have conversations with people in the medical system such as yourself. So I think just the hope of knowing that you’re not alone is a really important piece. 

 

Dr. Abdul El-Sayed: I really, really appreciate that. And thank you for taking the time to share your experience, both through the book and then also on our show. Our guest today was Meghan O’Rourke. She is a journalist, a best selling author, and the book is The Invisible Kingdom. Meghan, thank you so much for your candor and your courage and your time. 

 

Meghan O’Rourke: Thanks so much for having me. [music break]

 

Dr. Abdul El-Sayed, narrating: As usual, here’s what I’m watching right now. In all the crazy opinions that come out of conservative courts, this one I never thought I’d hear. 

 

[clip of unspecified news reporter] In Friday’s unprecedented decision, the all Republican court ruled that frozen embryos are the legal equivalent of children. Now, Alabama’s largest hospital is pausing all in-vitro fertilization treatments. [fades out indistinct]

 

Dr. Abdul El-Sayed, narrating: So let me break this down for a minute. The Alabama Supreme Court ruled that embryos deriving from IVF, which stands for in vitro fertilization, meaning fertilization literally happening outside of bodies, that these IVF embryos have the legal standing of children and therefore cannot be destroyed without killing a kid. Already, the largest IVF providers in Alabama have paused all IVF services because of it. There are so many facets of this story, so I want to break down a few of them here. But first, a quick primer on IVF. When folks can’t conceive naturally, they turn to fertility treatment. Contrary to what most folks think, fertility treatment is a lot bigger than just IVF. Before IVF, specialists will try other modalities to identify the barriers to fertility. Should those fail to trigger conception, specialists then turn to IVF. IVF involves harvesting eggs and sperm and then combining them outside the body. That sounds simple enough, but involves months of sometimes painful treatments from both partners. Women in particular, and also it involves tens of thousands of dollars to pay for the treatment. IVF is a near miracle. It has done wonders for people who could not conceive and have children because of that process. But given the expense on both the body and the pocketbook, doctors don’t just harvest one egg, they often harvest several, with the goal of creating several embryos and implanting the healthiest one. The other embryos, well, they’re cryogenically stored should a couple want to conceive again in the future. Needless to say, there are thousands of these embryos being stored in medical grade freezers around the country. And according to the Alabama Supreme Court, those embryos are kids. You can’t make this shit up. Now let’s dissect. Why is this happening? Well, because a small proportion of this country believe that life begins at literal conception the moment sperm hits egg. And whether you agree or you don’t, they want to read their religious beliefs into our laws governing you. Never mind the separation of church and state. Remember, this is the same reason why dozens of states have outlawed abortion. It follows logically that if you think life begins at conception, then the moment sperm and egg meet in a uterus or in a tube, that’s a human life. So in some respects, the Alabama Supreme Court here is following this to its logical conclusion. However insane it might be. But just think about how absurd the logic here is. If embryos created by scientists in a test tube are life, then folks who are trying to read their theological interpretation into our secular laws are also admitting that scientists can create life. Seems to be a contradiction of the broader goal here, no? And then there’s the fact that in their crusade to force their, quote, “pro-life” stances on the rest of us, they’ve robbed thousands of couples who want to have kids from the ability to do so. It’s nearly impossible to do IVF without creating extra embryos. Which by definition at the end of the process have to be destroyed. But what this does, more than anything else, is demonstrate the complete absurdity of the anti-abortion position in the first place. Embryos just aren’t children. They don’t have feelings or memories or hopes or dreams or ideas. They don’t love. Trying to give them personhood rights is itself an abrogation of what it means to be human. And in the process, it robs the rights of actual humans. Meanwhile, just south of Alabama in Florida. 

 

[clip of unspecified news reporter] Florida’s Surgeon General is defying more than 50 years of CDC guidelines in response to a measles outbreak at a local school. [fades out indistinct]

 

Dr. Abdul El-Sayed, narrating: A few weeks ago we talked about the massive measles outbreak in Europe, considering our globalized world and just how transmissible measles is. It was only a matter of time until it hit our shores. Last week, six kids at a school district outside Fort Lauderdale were confirmed with measles. To be clear, that means one kid probably got it. And then it started to spread. And given the fact that measles will infect 90% of susceptible people exposed to it, the most obvious guidance is to recommend that any and all unvaccinated people vaccinate and then anyone who doesn’t stays home. Except that’s not the guidance that Florida’s quote, “surgeon general” gave. Instead, in a letter to parents, dude specifically reiterated the normal recommendations and then said, and I quote, “however, due to the high immunity rate in the community, as well as the burden on families and educational costs of healthy children missing school, the Department of Health is deferring to parents or guardians to make decisions about school attendance.” So basically, here’s the recommendation. But honestly, whatever. What the F? A letter like this does nothing but to muddy the waters. It is an explicitly ideological act meant to placate his boss, Ron DeSantis’s politics, rather than to protect children from harm, it’s public health malpractice. And it’s a reminder of what the forces trying to put ideology over science, just like we talked about last week with the leaders in Ottawa County can do. Finally, since our episode about Gaza last month, an additional 5000 people have been murdered at the hands of Israeli bombardment with no signs of stopping. Netanyahu has all but ignored growing international pressure to bring this to a close. For our part, our government shamefully vetoed yet a third U.N. ceasefire resolution and continues to send weaponry to fuel the onslaught. As we discussed, though, the full consequences of the assault don’t end with the shelling and bombing. They extend to the destruction of Gaza’s water infrastructure and the overcrowding that allows respiratory illness to rip through the population. Epidemiologists at the London School of Hygiene and Tropical Medicine, as well as the Johns Hopkins Bloomberg School of Public Health, modeled the expected death toll overall under three scenarios. An immediate cease fire, an extension of the current status quo, or an escalation. All of them are grim. They found that an extension of the status quo would lead to 65,000 deaths over the next six months, where an immediate cease fire could lead to 44,000 fewer deaths, 11,000 in total. 44,000 lives that a cease fire could save. Think about that. But as Netanyahu’s [?] into Rafah demonstrated, the bombardment could still escalate. And under that scenario, the researchers found that it would take up to 85,000 lives in the next six months. And all of that is a reminder of why we need an immediate cease fire now.  44,000 lives, in addition to the tens of thousands already lost, are on the line. We’re not above correcting the record here at America Dissected. In our last episode with the public health leaders in Ottawa County, I misstated the qualifications of the individual whom the Ottawa County Board tried to appoint. I called him an HVAC repairman and an avid Facebook anti-vaxxer. The individual is not an HVAC repairman, but works as a health and safety manager at an HVAC repair company. He said he’s not an anti-vaxxer. However, we made those statements because he’s mocked Governor Whitmer’s press conferences supporting Covid regulations and has supported things like ivermectin and opposed masking. That’s it for today. On your way out. Don’t forget to rate and review the show. It does go a long way. Also, if you love the show and want to rep us, drop by the Crooked store for some America Dissected merch. Don’t forget to follow us at @CrookedMedia and me @AbdulElSayed no dash on Instagram, TikTok, and Twitter. [music break] America dDissected is a product of Crooked Media. Our producer is Austin Fisher. Our associate producers are Tara Terpstra and Emma Illick-Frank. Charlotte Landes mixes and masters the show. Production support from Ari Schwartz. Our theme song is by Taka Yasuzawa and Alex Sugiura. Our executive producers are Leo Duran. Sarah Geismer, and me. Doctor Abdul El-Sayed, your host. Thanks for listening. [music break] This show is for general information and entertainment purposes only. It’s not intended to provide specific health care or medical advice, and should not be construed as providing health care or medical advice. Please consult your physician with any questions related to your own health. The views expressed in this podcast reflect those of the host and his guests, and do not necessarily represent the views and opinions of Wayne County, Michigan Department of Health, Human and Veterans Services.