This week, Rebecca hands the mic to Ryan Prior for an Off-Kilter takeover episode. Ryan is a longtime journalist, former CNN reporter, and like Rebecca, someone who lives with invisible chronic illness. They first crossed paths when Rebecca was at the Center for American Progress (CAP) and more recently reconnected in the COVID era because of his forthcoming book The Long Haul—which looks at how COVID-19 pandemic as a mass disabling event has changed the face of disability and chronic illness in the United States. For this Off-Kilter takeover, Ryan sat down with another chronically ill journalist and author of a similarly timely book—Meghan O’Rourke, author of the New York Times bestseller Invisible Kingdom: Reimagining Chronic Illness, which Esquire called “at once a remarkable work of scholarship and a radical act of empathy.”
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. This week. I’m excited to be shaking things up a bit by handing the mic to an incredible colleague and friend for an extra special episode of Off-Kilter. Ryan Prior is a longtime journalist, former CNN reporter, and, like me, someone who lives with invisible chronic illness.
We first crossed paths years ago when I was at the Center for American Progress and more recently reconnected in the COVID era because of his forthcoming book called The Long Haul, coming out later this year. It looks at how the COVID-19 pandemic, as a mass disabling event, has changed the face of disability and chronic illness in the U.S. So, I was thrilled to pass Ryan the mic for a sit down with another chronically ill journalist and author of a similarly timely book, Meghan O’Rourke, author of the New York Times bestseller Invisible Kingdom: Reimagining Chronic Illness. I hope you enjoy this conversation half as much as I did. Let’s take a listen. [upbeat music break]
RYAN PRIOR: I was delighted this week to speak with Meghan O’Rourke. Meghan has worked as an editor for The New Yorker and Slate, and she now edits the Yale Review. I think she is a special person. Like me, she has lived with and written about complex chronic illness for more than a decade. I have followed her work over the past few years where she has written important stories for The Atlantic and Scientific American, mapping the terrain of contested illness. Her book, The Invisible Kingdom: Reimagining Chronic Illness, debuted in March on the New York Times bestseller list. I was eager to talk with her because her life, her work, and her book complement my own and because they have the capacity to help us recast a whole cultural narrative about how our bodies work at a cellular level and how we can reframe the story we all tell ourselves about illness. Thank you so much for joining me.
MEGHAN O’ROURKE: Thanks so much for having me, Ryan.
PRIOR: And first off, I wanna say thank you so much for writing a book that can help so many people feel seen and validated. So, if you could tell our listeners a little bit about your story. And how were you first thrown into this shadow world of chronic illness, and how long have you been navigating it?
O’ROURKE: Yeah. [chuckles] So, I’ve been navigating it for, god, I think more than two decades, but certainly two decades. I started getting mysteriously ill in my early 20s shortly after graduating from college and experienced a real roller coaster of symptoms that came and went and ranged across my body and included so-called vague and subjective symptoms like fatigue and brain fog and pain that would occur in different joints, but also a lot of neurological pain, what felt like little bee stings all over my body that would sort of come on very suddenly. But just really a whole host of mysterious things. Like, one week it was this. The next week it was that. And started seeing doctors and looking for answers.
And in my 20s, often, doctors looked at me and did lab work and saw that my cholesterol was really low and were like, “You’re fine. You’re really healthy. We can’t find anything wrong with you.” And often I was given that answer that I think a lot of patients are given, which is, “Oh, you’re probably stressed.” I had a really intense job, and I was up front about that. And of course, there were anxieties that came with the job. I didn’t think of myself at that point as being extremely anxious. But so, it was always chalked up to stress or anxiety.
And it wasn’t until more than a decade later that I started to get even sicker and really experience extreme bouts of sickness and was eventually diagnosed with an autoimmune disease, with Lyme disease that had never been diagnosed or tested for, and a whole host of other diagnoses that I can share too.
PRIOR: Yes. And so, some of those are POTS; it’s an autoimmune disease. You talk about thyroid issues, Lyme disease, and endometriosis is in there. Tell me what were the various diagnoses? And each of these has a, you know, sounds like a complicated scientific term, but usually is fairly simple to explain. But what were some of the diagnoses that happened along the way, and how did those all group together?
PRIOR: They often do group together in many patients.
O’ROURKE: Yeah. Well, I think one of the things I, one of the reasons I wrote my book was to try to almost be a letter to my young self that really had no idea what was going on and kind of underwent a pretty radical education over those 20 years that I was searching for answers. Which is to say that I have all these conditions that might at first seem unrelated, but part of what I’m arguing in my book and reporting on in my book is that a lot of these conditions really do cluster. So, in my case, I have autoimmune disease, I have a thyroid condition, and also a kind of vague autoimmune disease they can’t quite name but is there.
An autoimmune disease, of course, is when you’re—Well, I didn’t know what it was, so I shouldn’t say “of course.” An autoimmune disease is when your own immune system, instead of defending you against things like pathogens that are entering your body, actually turns on the body’s own tissues. And we don’t really know why it does that, but it’s a kind of mistake, right? It’s not supposed to happen that way. It’s not supposed to happen so much. It makes you sick.
So, I also have something called POTS or postural orthostatic tachycardia syndrome, right? Which is a mouthful, but it’s a form of what’s known as dysautonomia, which is a fancy term for dysfunction or problems in your autonomic nervous system. You can hear that: autonomia/autonomic. And your autonomic nervous system controls a lot of unconscious things like blood pressure, temperature regulation, I think digestion even.
And what I learned in my research is that often dysfunction of the immune system and dysfunction of the nervous system go hand in hand, and we can talk a lot more about that. But that’s a kind of emerging paradigm of research and understanding of these so-called invisible illnesses, even conditions like long COVID, that there is some dysfunction of both the immune system and the autonomic nervous system.
In my case, I first got the autoimmune diagnosis, also endometriosis, which is also a kind of inflammatory immune-modulated disease in which tissue from the uterus gets outside of the uterus and causes incredible pain. All of these things took more than a decade to diagnose, even though there were ways [laughing] to measure them. And even more, it took even more years to get diagnosed with Lyme disease or tick-borne illness, which was a diagnosis I at first resisted because I had heard so many cases of people getting a Lyme disease diagnosis that then turned out to be wrong. Or maybe no one could figure out what was wrong with them, so Lyme disease was sort of the last stop on the train.
But in my case, when I was treated with antibiotics, it was really, really clear I had some kind of tick-borne illness, probably Lyme disease, and another co-infection, actually. And I immediately got dramatically better, if not better in the sense that well people mean it, but just I began to function better. My brain was clearer. And even so, even though I was at this point deep in researching the book, it took another six years to get diagnosed with the final diagnosis, which is called Ehlers-Danlos Syndrome, which is a genetic problem of the connective tissue, and again, actually is really related. Because in all these cases, you’re [sighs] looking at sort of complicated interplay of how the immune system, connective tissue, and the nervous system all are in the same system, I mean, in the same body.
And I guess what I should just go back and say quickly is that in my case, the Lyme disease probably helped trigger the POTS and may have hastened the onset of autoimmune disease because one thing we know more and more that I report on in my book is the way that infections can help, when untreated or when they’re very intense, can sometimes help trigger autoimmune diseases. That was a long answer. [laughs]
PRIOR: It’s super helpful. And I think there’s one of the scientists that you spoke to in the book who I also know that talks about these as infection-associated diseases. Amy Proal is an up-and-coming microbiologist who I think has a powerful framework for thinking about this. But so, Lyme may have triggered a long list of other things that happened to you and which happen to more people than we realize. And why this, how I’ll start off is like, why is Lyme a controversial diagnosis, and why do you think that antibiotics worked for you and not necessarily for some other patients?
O’ROURKE: Yeah. So, Lyme disease has become controversial for a couple of reasons. One is that we lack really good testing for Lyme disease and other tick-borne illnesses. Some would contest even what I just said, but having reported on this for The Atlantic magazine, I do feel pretty comfortable saying the testing is not what it should be. And even people at the CDC, when I reported this piece, did say that to me. So, that’s because the tests look for antibodies to the infection. Now we’re all familiar with antibodies, right, after two years of, going into the third year, of talking about COVID and antibodies. But antibodies are the record of your immune system’s war with, or fight, with the disease, or encounter, if we wanna strip it of the military language. But everyone’s antibodies can look a little different.
And in the case of Lyme disease testing, too, we came up with—scientists came up with—a specific set of antibodies that they were going to look at and a specific set that they weren’t going to look at that might also be related. So, there’s a very constructed nature to the test, if that makes sense, right? We’re not taking your blood and looking for it and finding a virus. We’re taking the blood. We’re looking at all kinds of antibodies. We’re counting some of them as relevant and some as not relevant. And some of those not relevant ones, kind of are relevant, but we discounted them for historical reasons having to do with the hope of a vaccine and more.
So, but it’s also, honestly, controversial because at the time that Lyme disease was discovered, a lot of people started saying they just weren’t getting better after being treated with antibiotics. And medicine really dismissed those patients out of hand. It just didn’t, you know, there was a little bit of early…. If you actually go back in time, there’s some early interest in what those patients are saying, and there’s early research from some major figures into the idea that possibly these bacteria didn’t go away after three weeks of antibiotics or whatever the antibiotic protocol then was. But quickly, scientists began to dismiss patients who were saying, “Well, I don’t know. I don’t feel better. Is it possible there’s still bacteria there? Is it possible the infection triggered some kind of ongoing condition?” And these patients were told by the Infectious Diseases Society of America that no, this was just the aches and pains of normal life. Other people felt fatigue. Other people felt pain. They were just focusing on it too much, in essence.
Now why did that happen? Well, it happened because we really lacked the framework for what you just talked about, which is this idea of infection-associated diseases or infection-initiated diseases. The researchers are using both terms. I think right now, the idea that an infection could happen to a variety of people and behave really differently in different people is not so novel to us, having just watched that very thing happen vividly before our eyes during the pandemic, right? We all saw the ways in which the coronavirus basically made some of us acutely ill and some of us mildly ill. And then some of the mildly ill went on to develop really complicated, really debilitating long-term symptoms, right? And something quite similar happened with Lyme disease, but those patients were dismissed.
So, I think there’s a lot of politics involved in the controversy. I think there’s also genuine confusion, right? And because, one of the things I try to get at in my book is that, because there was all this invalidation of patients, it did leave room for a lot of misinformation and alternate narratives to creep in, some of them perhaps not so helpful or accurate, right? And then some of them more rigorous and more accurate. But yeah, there’s basically a scientific war about who has Lyme disease and whether the tests are inaccurate and also whether in every case antibiotics clear the disease or not.
PRIOR: And just, so, now in the midst of the pandemic, this, the same story around Lyme or the same story around a few other viruses or bacteria that can cause these long-term symptoms, this is happening at a much more scaled up version with potentially—not potentially—I think we objectively know now that there’s millions of COVID long haulers who are experiencing something that we could’ve called them Lyme long haulers if we had used that term in the ‘90s. How has the coronavirus changed your conception of the story as you were writing it? ‘Cause I don’t think that you expected to be finishing your book at a time when there was a complete overhaul of our understanding of this type of topic.
O’ROURKE: Yeah, it was pretty wild, right? I was just wrapping up the book, and then the pandemic sort of started looming on the horizon. And pretty early on, I was really worried about it because I was talking to these virologists who were saying, “This might be the one. This might be the pandemic.” And also, because I was reporting on all these people who are looking at in their work—and these are microbiologists and virologists and the like—people who are really looking at the fact that in some people, for reasons we don’t fully understand, a virus or a pathogen comes along and just knocks you sideways, right? Sometimes for life. And so, yeah, I was super worried. I was worried not only about the pandemic, but also about the crisis of chronic illness, the sort of epidemic that might well follow that acute wave that we first had.
The pandemic didn’t really change my understanding because I think I had already come to realize that the major framework I was trying to offer readers about illness was that there really is this emerging paradigm of understanding disease, not just as a genetic condition or as a tidy virus that behaves the same way in everyone’s bodies and comes and goes, and you recover or you die, but rather that there’s this emerging paradigm of a kind of personalized vision of the ways in which our bodies behave really differently in reaction to contracting infections. But what the pandemic did do was make it feel all the more urgent to tell that story and to explain and to kind of offer this framework showing this movement is real, right? And to ensure that we have a way of thinking about and talking about these diseases.
Because I think one reason that Lyme long haulers, if we wanna call them that, and also patients with myalgic encephalomyelitis or chronic fatigue syndrome, which we haven’t talked about, and even patients with autoimmune disease or fibromyalgia, I think the reason these patients are often dismissed and stigmatized even is because we just don’t have a way, a kind of critical cultural apparatus, for thinking about them. So, I guess I doubled down on my [laughing] feeling that I really needed to offer that in the book.
PRIOR: Yeah. And I come to this conversation as a patient with myalgic encephalomyelitis or chronic fatigue syndrome, which is my entry point over the last 10 years or so for being a journalist who lives with it or frequently writes or produces stories about this. And tell us more about it, well, one, on the personal level, I’m curious if you identify with that diagnosis? But also, how does that fit into a few of the other ones that we’ve talked about so far?
O’ROURKE: Yeah. So, I think technically I had myalgic encephalomyelitis or chronic fatigue syndrome. There’s a lot of different definitions floating around.
PRIOR: ME or ME/CFS, and it gets kind of [inaudible] to talk about the different debates about that. Yeah. Call it what you like.
O’ROURKE: Yes. [laughs] Right. So, I think technically, according to a lot of criteria, I had ME. And actually, a doctor, one sympathetic doctor said, “I think this is what you have.” I got a lot of, from less educated doctors, one doctor was like, “Well, you have chronic fatigue-like problems,” and didn’t even say “syndrome,” like just “chronic.” But one of my overwhelming symptoms was fatigue. And Ryan, I’m sure you can speak to this, and I know, I’m sure you’ve written about it. Fatigue is such an [sighs]…. It’s just not the right word, [laughs] right? It’s, I think, speaking of frameworks, one of the things we need is a new language for the experience of these illnesses and the symptoms. But it was more like a complete cellular enervation and very clear cut. For me, it was if I overexerted myself, I would crash really badly afterward. This is called post-exertional malaise. It’s a function, or feature also, of dysautonomia and POTS where if you kind of overdo it, your whole nervous system goes into overdrive in that case, and all kinds of things would happen. But yeah, I do relate to that diagnosis.
In my case, being treated for Lyme disease and another co-infection really helped those symptoms, which raises all these kinds of categorical questions of did I have ME, or do I have Lyme disease that manifested in ME-like symptoms, right? Different people I’m close to in the world of chronic illness have, some wanna say, “You do have a ME.” And some are like, “No.” So, I don’t get too far into the nomenclature, except to say that I think it’s actually important to talk about a lot of these conditions together, right? In advocacy, sometimes we see a lot of siloization and separation, which is important too.
But one of the things I really wanted to be conscious of doing and do in a really careful and thoughtful way in the book was really write about the fact that so many of us live with overlapping conditions, and that I think understanding more— If we had listened to, we as a society, we as medical science, had listened to the voices of patients with ME and really taken them seriously and really dedicated ourselves to trying to understand, research, and treat this disease, we would be in so much of a better position to treat long COVID, right? I’m sure the same is true of fibromyalgia, of Lyme disease, that there’s a lot of overlap here in some of the immunological dysfunction and neurological dysfunction. There’s key differences as well. So, yeah, I feel really like one thing we need to do now is not just talk about long COVID, but also really make clear that long COVID a) shouldn’t be dismissed the way these other diseases were, and b) that we need the funding that’s going to long COVID to also shine a light on these other conditions.
PRIOR: And so, somebody gets an infection, and then as they’re developed, how does that, what is the cascade of events that leads into one of these infection-associated illnesses? And it’s basically like, there’s a choose your own destiny. It could go, you know, were one to be put into the chronic category, it could go in the Ehlers-Danlos Syndrome, it could go into ME/CFS. I mean, it could go into a few of these. And I know that these are a bunch of different vocab words that some people may have a hard time remembering if they’re not taking notes. But what’s the likelihood of that happening? And what’s the sheer prevalence? I think I wanna make sure that people understand that this isn’t a niche issue, that this is happening to a large number of people who aren’t getting good care.
O’ROURKE: Yeah. So, to take the first part of your question, just this kind of what happens, I think it is important to pause and go back to— Actually, I wanna go back to Amy Proal, that researcher who’s in Cambridge, Massachusetts, who you mentioned, who talks about infection-associated conditions. And she said something really helpful in clarifying that I quote in the book, which is that one way to think about how these illnesses develop, and one reason that they can seem murky, is that their beginnings can be a little bit unclear. Let’s set aside long COVID for a second. But sometimes people are going along, and then they start to feel a little, they get a virus. Maybe they don’t even really notice it or think much about, and they start to feel a little more run down. And then they move to a moldy house, and then they start to feel more run down. And then they try to push through it by running a half marathon, and boom. Then they’re in crisis. And all of a sudden, they’re bedbound. They’re having a really hard time functioning. They experience this thing we call post-exertional malaise.
And so, Proal talks about this concept as being one of successive hits, right? And if you think of the immune system and pathogens, pathogens come in, and they actually alter our immune system. That’s one of the ways they survive. SARS-CoV-2 does very specific things to our immune system to try to persist and to get transmitted to the next person. The same is true of the Lyme bacteria, Borrelia burgdorferi. The same is true for pretty much any pathogen. So, let’s say you’re also experiencing, as happened to me, the death of my mother during a period where I was really not sleeping, and I got a really bad virus of some kind. And boom. All of a sudden, the Lyme disease I had been living with and probably sort of managing on and off for 10 years, just I crashed, right? So, because I was exhausted, because stress itself affects your immune system, all of those things.
So, I think just pointing out that first, there’s this kind of problem of origin, right? That one reason long COVID matters so much is that, as you said, it’s horrifically on a scale that’s so enormous, and the origin of this disease is so clear, right? We really, because we’re all paying attention to the pandemic, it is not escaping our notice that the SARS-CoV-2 virus is triggering ongoing illness in all these people who have, again, maybe the genetic susceptibility, maybe they happen to have another pre-infection. We know that a lot of people who are getting long COVID happened to have activated Epstein-Barr virus at the time that they got the coronavirus, right? So, we can really look at this model if we pay attention. It’s there to sort of unpack.
Then there’s this question of prevalence, which is really hard to pin down. And I kind of got into [laughing] a Twitter fight with someone because I said a significant number of people who get COVID are getting long COVID. And she said, “Well, what’s significant?” I said, “Well, up to 30 percent in unvaccinated people is the statistic that we’re hearing.” And then getting vaccinated and staying up to date seems to cut that in half. But still, you’re looking at something in the range of 10 to 15 percent of anyone who gets COVID could end up sick for years in ways we don’t understand, right?
And really interestingly, the chronic Lyme or Lyme long haul or whatever we wanna call the people who get tick-borne illness and don’t get better, it’s a very similar percentage of 10 to 30 percent. Why that range? Well, it’s hard to parse everything apart, right? And researchers are doing really hard work, by the way. They get kind of…you’ll see a lot of like, “Well, we don’t know whether these people really have long COVID or autoimmune disease” or this or that. But actually, researchers are really trying to tease apart different cofactors and correlations and look at who has what. And but there’s that range of 10 to 30 percent. So, that’s millions of Americans collectively.
PRIOR: And I wanna get into your specific role, which I think is coming from a background as a poet or as a professional writer. I think you have a unique way of being able to conceptualize the narrative that few other authors who try to tackle this topic would. And I keep thinking back to one of my favorite quotes ‘cause as I was studying literature and international affairs in college and trying to figure out ways to connect those two majors, those two disciplines. And Percy Shelley talks about this idea that poets are the great unacknowledged legislators of the world. And I wanted to ask about, how do you see your role as poet in what you hope to be able to effect as change with your work and with this book?
O’ROURKE: Ah, that’s such a great question. I think that when I began writing this book, it felt urgent to me that I both tell my own story and try to really dramatize the lived experience of these illnesses, which, as you know, Ryan, is really hard to communicate in day-to-day life. We lack a kind of dominant cultural narrative of chronic illness, period, right? We’re a culture that really likes to talk about recovery and muscling through it and just do it, all of those things. So, we, first of all, just lack a framework and an acceptance really of chronic illness.
Second, we tend to stigmatize these invisible illnesses that we don’t understand very well. Susan Sontag and her great book, Illness as Metaphor, which was really about breast cancer and cancer, talked about the ways that throughout history, when we have not understood something well, we have tended to psychologize it or build a kind of metaphor around it. She didn’t mean like me describing my pain metaphorically. She wasn’t against that, but she was against the ways in which our society tended to make metaphors to avoid dealing with the more challenging realities of facing illness that we couldn’t cure and couldn’t understand.
So, I think as a poet, I wanted to both get at these frameworks that we’re talking about. The journalist in me knew I could report out the story and find frameworks and find researchers, but I also just really wanted to animate the tiny moments in the day, right, that one lives through as a chronically ill person without answers and to animate the incredible frustration of not just suffering. I mean, suffering is one thing, but of suffering without recognition, which in essence rendered my own suffering meaningless, right? If no one could see it, no one could work on it. No one could wonder about it. No one could…. I couldn’t become part of a meaningful body of research, and it was just not seen. So, I think the poet in me cared about all of that.
I would also just say quickly that I feel Shelly’s getting at too is poets sometimes like to run against the grain a little bit, right? And I think that there was this part of me that, as a writer and poet, has always been interested in places that I think the culture is papering over something difficult to look at, right? And I do think poets like to look at the difficult things, and that’s a big part of this book too.
PRIOR: And I think that in delving into this area that a lot of people might not look into, which is also one that I’ve been struggling to characterize and trying to think about it, you know, here’s the cutting-edge science. It’s palpable, and it makes sense, and then a scientific language can’t actually fully characterize this. Tell me a few more of the metaphorical ways that you think of that are helpful for framing this. And particularly, I think in use in everyday conversation, how can one discuss this in a way that’s most rhetorically effective?
O’ROURKE: Mm. That’s such a good question. I now don’t have a great answer to that. I’m wondering what you think.
O’ROURKE: But I would say that one thing I’ve thought a lot about writing the book was metaphors for fatigue and brain fog because I think—and I’m curious what you think, Ryan—but I think when people who haven’t experienced brain fog hear that term, it sort of slides right past, right? It doesn’t sound that bad to them because everyone has had brain fog. This is sort of what the Infectious Disease Society was getting at with Lyme disease, right? We’ve all had a hangover or just a bad day where we’re getting sick and fighting it off maybe. But the brain fog that we’re talking about in these conditions is so severe and so unrelenting. It really is a form of cognitive, you know, of being cognitively compromised, right? And it permeates you, and it feels like sand is in your brain, and molasses. And I remember the combination of brain fog and fatigue feeling like this: I was made of sand, and I had to hold my body together.
So, part of me thinks we need better metaphors and better questions, actually, in a health care setting and outside of it to offer and to ask chronically ill patients, not, “Rate your pain on the pain scale,” but, “How are these conditions, how is your pain most impacting your life? What is it preventing you from doing currently,” right? We need to really measure these illnesses and diseases in terms of loss. And what I mean by that is the loss of possible lives lived, right? I think the reason that they have been ignored and tend to get dismissed is that you’re getting COVID. You’re not dying from it, but you’re saying, “I’m tired, and I have brain fog.” And no one understands the severity of that. So, we instead need to say, “How has your life changed? What can’t you imagine doing anymore? What would you no longer be able to do,” right? And I think that framework would really help us measure the actual fact that although you may not die from these diseases, many possible futures do die, [chuckles] go away, right?
PRIOR: Yeah. Just as you’re talking, I was thinking that, you know, what is the core, what’s happening with brain fog? Why is it so existentially traumatizing to people? And it’s like this foundational thought in Western philosophy from Descartes: I think, therefore I am. And with brain fog, if you lose the ability to think, you lose the ability to be. And similarly, if you lose the ability to dream, to project into the future a desired life. And many people with these chronic illnesses may have a dream of becoming a mother or a father, which is, that isn’t something to be taken lightly. That is oftentimes the most important thing that one might ever be able to do in life and to continue the human race, but also to be fulfilled in a deep, human way. And how did you navigate—I mean, this is a very complicated question—but how did you navigate that question as you were a, you had a desire to become a mother, and your illness was getting in the way?
O’ROURKE: Yeah, I really wanted to have kids. And I remember we started trying, and I was like, “Wow, this is really killing me.” [laughs] Like, I wasn’t even fully aware how sick I was at the time, but I remember the thought popped in my head, like, I wonder if I would die if I got pregnant. Which was sort of the moment that I realized that I really was sick after having kind of managed for years with these intermittent bouts of sickness. But yeah, you know, I think in my case, my body knew how sick it was, and I couldn’t get pregnant when I was really sick. It was only after I got treatment for tick-borne infections that I was able to get pregnant and have a family.
And I think about this all the time and write about it in the book because whether the life you can’t have is a family and children or a career as a doctor or the travel you loved to do or just being able to join your family for dinner, right? Some people can’t walk around the block with these illnesses. There’s so much that you can lose, and I really do wanna focus our attention as a society, again, not on legislating are these symptoms real, and how do we measure them and that? That’s an important conversation about how do we measure them? But we spend so much time just arguing about the reality of these diseases and whether they are there, when it’s like, they’re there. And they impact people’s lives in profound ways. So, let’s measure that impact.
I think a reason that brain fog and fatigue are so hard are that it’s so severe it changes every aspect of your life, and you become a person who has to weigh every small thing you do. So, forget about pregnancy, right? I, at my sickest, couldn’t go teach a class at Princeton where I was then teaching writing without collapsing and being bedridden for days, right? I couldn’t. I had to make money. I was holding onto work as much as I could. And I would travel from Brooklyn to Princeton and back, and that effort would leave me completely spent. The conductors would have to wake me up at Penn Station ‘cause I would be so passed out in exhaustion from the cognitive and physiological effort of being on a train, sitting in class for two hours, and getting on a train back.
So, I think when you hear something like that or you hear that when I was even sicker, I couldn’t walk around the block without having that kind of crash afterward, you start to understand the scope of what is lost, the scope of hopes that are lost, the fact that your very sense of self becomes totally dispersed in the act of trying to just function, right? It’s not like a pain that can be ignored. It’s central to your very being.
PRIOR: And as you were writing—and I’m curious because I had, as I’ve been writing about this topic, I’ve had to regularly confront my reasons for doing it and purpose to drag myself forward—was it hard to write about such a topic that was so traumatizing to you? ‘Cause I know it was. And then at the same time, you felt like one can only assume that there’s a sense of purpose that comes from it. But I just, was this a cathartic experience to write this, or did it feel like you sort of made it worse? Do you feel like you came out of the writing the book more clear than you otherwise would have been?
O’ROURKE: I do think I came out of the book more clear. Yes. It’s a great question. I absolutely felt driven beyond myself to write this book. I felt that early experience of my illness was the realization of kind of exiting a doctor’s office in tears and just feeling so dismissed and unseen and alone. And I felt so alone. I remember thinking, god, I’m just suffering alone, and I’m gonna die alone, and no one is ever gonna see this. And in that moment, which was a terrible moment, I just remember flashing on the feeling that, oh my god. There’s millions of us feeling like this, [laughing] right? And I think that was the moment I knew I was gonna write this book—which it took me a while to be healthy enough, by the way, to be able to do—because I just really wanted to tell this story not because my story is extraordinary. My story is not at all extraordinary. And in fact, I was much less sick than many people. And that’s why I had to write this story.
But your question is a great one. There’s this idea that writing is always cathartic, right? That it always makes us feel better. Certainly, in my case, finding language for the experience was a small form of control that at times was incredibly helpful for me and clarifying for me. But there were also times when I was trying to write about Lyme disease in particular and other moments where it was maddening. And I remember one day just being so upset [chuckles] by what I was reporting on and what I, you know, that I made myself feel quite sick, right? Because it’s your heart rate rises, and you’re stressed, and you’re, you know. And all these things can exacerbate immunological problems.
And I remember thinking, oh, right. When you’re writing about really difficult material, sometimes you have to step away until you can get just enough distance that you’re not…. I didn’t wanna harm myself writing in doing it. That might sound extreme, but it was true. There are just these moments where just looking at the ways in which suffering has been met with incredible indifference and incuriosity was, to me, just an intellectually enraging reality, that there were times I had to really figure out, okay, how might I use that emotion and channel it productively into a kind of rigorous work of writing? Does that make sense?
PRIOR: Absolutely, yeah. And it helps pivot to this. We’ve got about 20 minutes left, and I wanna make sure we spend a large amount of this conversation talking about solutions. ‘Cause I think that we’ve done a good job here of defining the problem in a personal level and then talking about the broad swath of people who have this so that your story is really like a metaphor or like a micro version of what we can expect that the details of millions of other lives will be quite similar to the details of your life.
And what I’m excited to be doing with this work with The Century Foundation to try to think about policy ideas on how do we, you know, not taking all this raw data about human suffering and designing a health care system or a disability system or a society that is more responsive to patients who have these conditions and these complaints and these diseases. And so, one of the chapters that I thought was particularly inspiring in the book is called Solutions, and I wanted to ask you some questions about what did you find in terms of clinicians or scientists who were pioneering new approaches that you think would be worth more funding or more interest or more buy-in?
O’ROURKE: Yeah, it’s such an important question. And I do think all the solutions so far are partial ones, right? And we need to, I think, first of all, just start having this conversation on a national scale that allows us to feel that urgency and really start becoming much more committed to exploring possible solutions. But I will quickly lay out a few things that I saw and have been thinking about.
One is that when I first got really sick, I kept wishing there was some kind of center I could go to, right? One thing we haven’t touched on is that in our very siloed medical system, patients are often left to their own devices to try to see and connect their many specialists. Because often with these illnesses, you have symptoms, and pretty profound ones, that roam the body. There can be neurological or dermatological manifestations. There can be rheumatological ones. And then there’s these fundamental symptoms we’ve been talking about like fatigue and brain fog. To what doctor [chuckles] does fatigue or brain fog belong? It’s exactly not clear.
So, I was really heartened that in the aftermath of the pandemic, there was a center created at Mount Sinai called the Center for Post-COVID Care, where it’s one place, and they really can’t get to everyone. They were trying in the first months of, and have been continuing to, to treat patients who had positive COVID tests and continue to be sick with what they call the kind of whole-body approach. And there’s also a center, an autoimmunity center, now called the Autoimmunity Institute in Pennsylvania, where they also are trying to bring together specialists and treat kind of full bodies.
So, what these centers do is they help coordinate care for patients. So, that’s one very pragmatic thing that we absolutely need is better coordination of care and genuine communication across the specialties, right? Because sometimes these cases manifest as really sui generis, right? Everyone’s manifestation is a little bit different. And so, you need collaboration among specialists who can put their heads together and have a rheumatologist and a neurologist looking at a case. And the rheumatologist thinks, “Oh my god. I read this case about another person just like this anomaly 15 years ago.” This is an example I just heard talking to folks at the Autoimmunity Institute, where it was really by being in a room together that these two physicians helped figure out what was going on and how to treat one patient with a really unusual autoimmune disease.
The other thing that the Center for Post-COVID Care does that I think we need is this whole-body approach, which is to say that our medical system is really fixated on, or built really, to fix things, right? It’s built for crisis care. One of the things that many of the researchers and high-level physicians or health care administrators underscored to me is that it’s not set up to help manage illness, right? And in particular, it’s not set up to help manage diseases like these that can’t be cured but can sometimes be made [chuckling] slightly less taxing with interventions around sleep or lifestyle. Food can be really specific triggers for some people because once you have the immune system involved, sometimes there’s immunological responses to foods. And everyone’s is a little different, right?
So, we need this kind of slow medicine that is going to go back to this idea that an illness is a collision of something like a pathogen and also your own biography, right? And maybe that biography includes a genetic susceptibility to something. Maybe it includes having lived in a moldy house that has your body struggling already to cope with mold, right? We need that personalized kind of treatment, and we really now have the tools to offer it if we decided to, right? The challenge, of course, is money and funding. One of the reasons I call it “slow medicine” is that this kind of medicine takes a lot of time. Doctors have to learn. I think also, we need to think about medical education. We need to get doctors to take case histories in a really different way.
And I think part of the solution here in care is pivoting from the, you know, what’s hurting? Where on your body is it hurting, to this more, how is this impacting your life? What are your goals, right? I, in the Solutions chapter, talk about this researcher named Susan Block at Harvard who was a pioneer of palliative care. And one of the points I try to make is that we need a kind of pivot like the pivot that happened in medicine when palliative care was pioneered, right? We didn’t used to have palliative care. We just would kind of continue to throw medicine at people who were dying, and we never asked them a very simple but a very powerful question, which is, “We can’t cure you. What do you want to do with this time that you have? Where would you like us to focus our efforts? What are your goals for this time?”
We don’t ask chronically ill patients that question, right? We’re not asking patients with autoimmune disease that when they go to the rheumatologist. So, I think we need the slow medicine. We need coordinated care. We need shifts in medical education to really educate doctors and health care workers on how to care for chronically ill patients. There’s research that shows physicians feel very undereducated in the care of chronically ill people. They really don’t know how to help them. And there’s also a lot of data showing that empathy and warmth and saying things like, “I can see that you’re suffering” have really beneficial biological impacts on people. Like, their actual biology changes when they feel cared for, and it’s an effect that can be as powerful as certain medications.
PRIOR: Right. And I wanna make just, that point comes across very clear when there’s a sort of an antagonistic relationship between patients and providers in this chronic illness environment. And it can be very easily, you can solve 51 percent of the problem, it seems like, just by simply validating somebody and telling them that, which is removing the antagonistic aspect in that relationship and—
PRIOR: —just starting in a proactive manner.
O’ROURKE: Yeah, I mean, that’s one of my great wishes is— You know, a big question animating my book is, why do doctors find it so hard to believe patients with these conditions? I still marvel at this. I was just saying this to someone the other day. Like, there’s just still this reflexive desire to see these conditions as being driven by anxiety. And that’s happening with some of the funding for long COVID, is there’s these big studies looking at, is it psychosocial anxiety that’s triggering this epidemic of long COVID?
And I believe in studying the psychosocial pieces of this. And as I’ve talked about and intimated, stress can certainly play an important role in these diseases. But they’re not the, I don’t think they’re the underlying cause. I’m not a researcher, but let me just say that [laughs] as an underlying cause, based on reporting. And yet, patients, people with these diseases, are met with a kind of reflexive skepticism, and antagonism sort of exists in the air, right? So, why is that? I asked Susan Block that question. She thought a lot of it had to do with doctors’ fears that they would believe someone, and it would turn out that the person was a hypochondriac and having them on or a scammer or whatever. And I thought this was so strange that doctors have this fear, and it’s such a big fear that they can’t help the suffering people in front of them.
And that’s where I do think clearly, something pretty radical has to shift in medical education around uncertainty and around how do you treat people whose bodies live at the edge of medical knowledge? And supporting physicians and health care workers in feeling like it’s okay to be empathetic and to care for these people. And if, I don’t know, and just not to fear that you’re being taken in. And also, to be able to say, “I don’t know how to help you, but I see that you’re suffering,” right? We need those things.
PRIOR: Now, short of wishing all of these conditions away completely, and I’m thinking like, given the magic wand and the power to creatively reimagine how health care works, how would you think about designing a system that can work efficiently and empathetically and with the greatest scientific know-how to maybe manage, maybe cure? How would you think about trying to build that system?
O’ROURKE: Yeah. Well, the number one thing, I think, is to move away from a focus on algorithms and to center patients’ voices. A concern I have is that while long COVID is shining a spotlight on these conditions, and while there is more funding for long COVID than there has been for many of these conditions, are we going to spend that money wisely? Are we going to stop trying the things we tried before, which is often, “Let’s look at how these patients’ illness may be driven by anxiety or deconditioning or,” right? And let’s look for some new answers and for some new paradigms.
So, the number one thing I wish is a kind of blank slate where we really start asking new kinds of questions and searching for new answers driven by what patients know about their own conditions, right? Second, I do think many patients would like to see these coordinated care centers where it’s just easier to have access to doctors and to nutritionists and to PT and all of this. I’d love there to be one place where a lot of us have to do PT, so to kind of manage our conditions. I want that to all happen in one place, right?
But I think research-wise, we just, there’s so much we need to do, right? We just lack the basic research knowledge. And I do wonder, or, and I wonder how you think about this, Ryan? But I’m puzzled, I have to say, that there’s not more basic familiarity with the idea that the immune system and a nervous system are intimately connected and that dysfunction in the nervous system can impact dysfunction in the immune system or vice versa. And that a lot of these people are suffering from immune and neurological dysfunction, which if we don’t, can’t cure, maybe we could help treat. And maybe since we can’t cure it, we need to just throw a ton of research at along with things like micro clots that we’re seeing in long COVID. We just need to know a lot more about these immunological abnormalities and what’s triggering them, what’s exacerbating them, what’s making it harder for people to get better. Do antivirals help? Why are there not more antivirals being offered to everyone, everywhere? Things like that.
So, I just, my dream is, you know, a lot of research, but research that’s smart and doesn’t repeat the same old mistakes, and research that listens to patients. And then some of that money going to treatment and helping us live with disease even if we can’t overcome it, right? Not the quick fix, but the slow, dimensional work of really taking care of the bodies of people who live with these illnesses and helping.
One piece we have not talked about, by the way, and I don’t talk about enough in the book, is the whole question of disability. And I think a huge problem facing us is people are leaving the work force, and our disability system is really broken and doesn’t support sick people adequately. Yeah.
PRIOR: Yes. That this wave of COVID long haulers representing a mass disabling event in the same way as polio or HIV in generations past will cause us to demand that these solutions get sort of turned into the, you know, get implemented and become part of the infrastructure. I think this time around, part of that means much more patient-centered care. I think putting patients into the design process, because many of them have hard-won wisdom that makes them the experts in their own care in ways that doctors aren’t. And so, I think recognizing patient expertise is maybe one key way to build a system that works more effectively.
O’ROURKE: A thousand percent, yes. I mean, this just seems so clear. And I mean, you’re probably a version of this. I’m certainly a version of this. You are a version of this. So many of us basically undergo a kind of necessity driven education, where we, with some research, I mean, you and I are both trained as journalists. We can do research. The research is there. You can start to put the pieces together, but not enough of it is being done, right? And yeah, we need to listen to patients.
PRIOR: And the only people who have the incentive to do it are the ones who are patients because it’s their life that’s kind of fallen apart. And the cardiologists can roll out their little segment of their little organ system as it’s not their problem, but it still remains the patient’s problem. So, there’s [laughs] every incentive in the world for the patients to do this and new lessons in it for certain other stakeholders in the ecosystem.
O’ROURKE: You know, and actually, one really small point, but I think it’s actually a large point, is that one thing I’ve heard from, there’s this kind of coterie of researchers who I think are doing really amazing work, and a lot of them have some personal experience with this. But they’re forced—they’ve told me they’re forced—to sort of minimize that because it’s almost held against them when they’re applying for grants and doing science. There’s this idea that if you have a stake in it, then your science might not be good. And I think this is so clearly [laughing] bad thinking, right!? That not just patient-centered narratives, but also, we need to not penalize researchers and physicians who’ve got an experience of this with their own ongoing intellectual interest in it, for having had that experience. It’s just a very weird, very backward framework that we currently have.
PRIOR: Yeah, it seems obvious that the, yeah, if someone’s a researcher or if they were a patient researcher, that my opinion would be that the patient researcher would be the one with even more interesting set of opinions on this.
We’re butting up near the end of time here. But I wanna ask you last question. The release of this is that your book is called The Invisible Kingdom. And then there’s another book called, another medical memoir that came out this past year, called The Two Kingdoms. And I wanna ask about this question about where does that come from, and why do we need to think about kingdoms in relationship to our health and which kingdom we may find ourselves in without wanting to?
O’ROURKE: Yeah. So, the title is inspired by the first line of Susan Sontag’s seminal book about illness, which I mentioned, Illness as Metaphor. And in that book, she opens by saying, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” So, I was thinking about this quote as the epigraph to my book. It’s a quote you see all the time. It’s, I think, one of those really important encapsulations of the ways in which being sick can make you feel disconnected from a previous life, and in fact, connected to wisdom, insight, realities that we often hide from ourselves, right?
And so, I was thinking about…. Titles are hard, right? So, I was thinking about how to title the book, and I realized that what I was writing about was sort of another kingdom, which is the invisible kingdom, the kingdom in which you are sick, but no one is seeing that you live in the kingdom of the sick. I have to say, like the Democrat in me was like, wait. I don’t really wanna use like a monarchical word.
O’ROURKE: That’s a little weird, you know! And I’m trying to get toward like democracy and sort of social democracy in some ways in which we’re all caring for one another. But it did just seem an important reference point. And I also thought it was, the poet in me liked it, right, because it was very visual. You could hear “the invisible kingdom,” and you could know right at once, like, oh, there’s something here about a whole world of people or a whole world that’s not seen. And it conveyed it in three short words. So, that’s what that is doing for me. It’s both saying we live in this invisible kingdom, and then we, collectively, who are sick are the invisible kingdom, right?
And I also liked it because I thought it goes back to that key moment I felt when I was so alone and so discouraged after being dismissed by a doctor. And in that moment of incredible loneliness, realized that I was not alone, right? And I wanted to remind us all that we do have power in numbers, and that as sick as we may be, when we raise our voices together and we act as a collective, we can make change. And I wanted that bit of optimism. I know how pessimistic we can all feel, and I just, I wanted that bit of beauty and optimism in there that there really is this invisible kingdom of all of us that can make something happen.
PRIOR: And I love that. And it’s so exciting to me, this sort of community, not just of patients, but of patients who are researchers, but also patients who are authors and being a part of this idea that we can sort of help either manufacture or legislate or write our way, you know, write our stories into a way that creates a society that’s more equitable, that works for all of us. [theme music returns]
VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.