Invisible, with Meghan O’Rourke

About the Guest

Meghan O’Rourke is Senior Lecturer in English and Creative Writing at Yale University and editor of the Yale Review. She is author of The Invisible Kingdom: Reimagining Chronic Illness; the bestselling memoir The Long Goodbye; and poetry collections including Sun In Days, which was named a New York Times Best Poetry Book of the Year. Visit her at meghanorourke.com.

Best Books

The Invisible Kingdom: Reimagining Chronic Illness; by Meghan O’Rourke.

In the Land of Pain (Vintage Classics), by Alphonse Daudet.

Transcript

MEGHAN O'ROURKE: As lonely as I felt, there had to be millions of other people like me. If only we could all come together collectively, we could become visible. Because this is just an enormous group of people who are all suffering and who need to be seen.

BLAIR HODGES: Meghan O'Rourke is a citizen of what she calls the invisible kingdom. Maybe you are, too. Anyone can become a citizen. All you need is a debilitating chronic illness that doctors can't easily understand or treat. Autoimmune diseases, chronic fatigue syndrome, chronic Lyme, fibromyalgia, and a bunch of other conditions at the blurry edges of medical knowledge. Doctors couldn’t solve Meghan’s hives, dizziness, her chronic pain, drenching night sweats, and symptoms that would come and go, getting worse and worse.

She decided to create a record of what she was learning about chronic illness from doctors, scientists, and patients along the way. Her book is called Invisible Kingdom: Reimagining Chronic Illness, a New York Times best-seller and finalist for the National Book Award. Meaghan O’Rourke joins us to talk about it now on Fireside with Blair Hodges.

Autoimmune diseases and more – 01:19

BLAIR HODGES: Meghan O'Rourke, welcome to Fireside with Blair Hodges.

MEGHAN O'ROURKE: Hi, I'm so excited to be here. Thanks for having me.

BLAIR HODGES: I want to start off in a weird place, maybe. I want to talk about Crime and Punishment by Dostoyevsky. Have you read Crime and Punishment?

MEGHAN O'ROURKE: I have. Not in many years. [laughs]

BLAIR HODGES: Yeah, same! So the reason I want to start there is because I had a similar experience at the beginning of that book and also your book. So the first time I read Crime and Punishment, I didn't know much about it. I just knew it was classic. And I expected some sort of Whodunnit. But then right out of the gate, Dostoyevsky describes this murder, tells us exactly who did it, tells us why they did it.

And so your book kind of did that, too. I expected a book about chronic illness to begin with the mystery and lead me along and take me through all these, you know—kind of as you experienced it, but right out of the gate you tell us what your chronic illness is, and what you've been diagnosed with.

MEGHAN O'ROURKE: Yeah.

BLAIR HODGES: So let's talk about those diagnoses right now and why you decided to begin the book, just putting it out on the table that way.

MEGHAN O'ROURKE: Yeah, it's a great question. One of the reasons I did that was the book in a way resists some of the tidiness of the kinds of illness narratives we're used to reading, which are often narratives of, you know, triumphant overcoming of disease, you know, the muscling on or the “just do it” model, whatever doesn't kill you makes you stronger.

The other model we have is, you know, the sort of spiritualized succumbing. If you think of that, I don't know if you've ever seen the movie Love Story or read that novel from the 60s or 70s. But you know, this young woman dies of leukemia, and it kind of ennobles everyone around her. But my story was not like that, it was murky and messy. It wasn't exactly dramatic. I didn't exactly have all the answers at the end.

And also what I took to be “the quest,” which was figuring out what was wrong with me and getting better—it turns out if you read the book, as you have, you'll find it turns out to be a very different quest. It's really about learning to live with illness.

So I decided that in the preface I should just give the reader what they wanted, so that they could experience the book as the story of that murk and mess without being like, “why is this—” and basically tell the reader this is going to be a messy story of living with illness.

Those diagnoses were an autoimmune disease, untreated Lyme disease that had been left to flourish in my body for decades, something called Postural Orthostatic Tachycardia Syndrome, which is a disorder of the autonomic nervous system, and in my case, a genetic condition called Hypermobile Ehlers Danlos Syndrome, which means that your connective tissue is not made properly. And many people who have it also end up with autoimmune diseases or things like POTS for complicated reasons.

So there was a kind of interrelationship, but getting the diagnosis was like peeling the layers of an onion. When I got the first one, I was like, “Okay, here it is, this is my diagnosis!” you know, but as I recount, right, there are more years of kind of figuring out that come after that.

BLAIR HODGES: That's right. So even though you start by disclosing those things, the reader still gets to kind of experience the unpeeling. Because, you know, by the time I'm halfway through, I have forgotten all of the things, and it's like, “Wow, there's more, then there's more.”

So we do get to experience some of that onion peeling, too. But wow, I mean, how's your health generally now? So you're living with these things, I mean, we're meeting today, and I just wondered, I'm like, wow, you're trying to plan ahead for interviews, you're trying to plan ahead to talk about your book and do these things. That must be difficult when you're facing ongoing chronic illness.

MEGHAN O'ROURKE: Yeah, you know, it comes and goes. I'm lucky that, as I recount in the book, once I got these answers and was able to get treatment and make a lot of life changes [laughs], you know, I really do function pretty well a lot of the time.

Early in the book, a doctor tells me, “You're just gonna have to accept that you're gonna always be at eighty percent.” At the time, I was like, “what!?”, because really, I was at about twenty percent at that juncture. But her words, really, are words I live by now, which is to say, a lot of the time, if I'm lucky, I'm at about eighty percent. The hard part is the unpredictability of a flare, or, you know, I think you and I were trying to schedule this a while ago, and then I got COVID. And for me, something like COVID ends up being a really big deal. And it's months of trying to recover as opposed to weeks of trying to recover.

BLAIR HODGES: That's what I want people to remember about the pandemic. And people say “Well, the pandemic’s over,” and the US government announcing that, is that a lot of people dealing with chronic illness or other just immunity issues, the pandemic in some ways, had always been there, and is now sort of amplified and I hope people are mindful of that and aware of the fact that it still really affects people.

MEGHAN O'ROURKE: Yes, yes, I think that's right. And that people with various immune mediated illnesses—one of the things that can cause those immune mediated illnesses are viruses, or can trigger them, it can be a factor. And COVID turns out to be one of these viruses that really seems to have that triggering capability.

So, you know, we've all heard about long COVID and long COVID is really an umbrella term for a host of different knock on after effects. But I think when we think about COVID's role in our society, we have to think about the fact that this is a virus that seems to be triggering a lot of immune dysfunction and other problems in a significant portion of the population, much the way, by the way, that the Epstein Barr Virus does, and we're only starting to learn about all those factors.

BLAIR HODGES: I feel like your book tries to resist silver linings or cheap lessons, but I did appreciate at the end discussion about how more medical professionals are coming around more to autoimmune diseases because of long COVID, where perhaps some for years had wondered about people dealing with Lyme disease or dealing with lupus, and then experiencing long COVID themselves and saying, “Oh, no, this is real. I'm experiencing this!”

MEGHAN O'ROURKE: Yeah. So if the book tries to lay out both that there is what I call a silent epidemic of these diseases—that autoimmune diseases are rising what one researcher told me was epidemic rates in Western countries like the United States. And yet the medical system really isn't equipped very well to deal with them. It doesn't have autoimmune centers. With autoimmune diseases, I mean often you have systemic symptoms, and you need to see a neurologist, a dermatologist, a rheumatologist, right? And we need—sort of the way we have cancer centers, we need autoimmune centers.

And so, you know, when I looked for, as you say, I resist “too easy” answers. But when I was thinking about, “Okay, what what's the kind of action item here for the book? What am I trying to let people know we need,” it is that that kind of systemic care. And the silver lining here is that I do think COVID is pointing the way toward some of that.

It's going to take longer than it should. But there are a lot of medical professionals who really now have a lived experience of what it's like to live with one of these system-roaming illnesses.

Living on the edge of medical knowledge – 08:12

BLAIR HODGES: Right. Let's talk about metaphors about disease. Your book does a great job introducing people to this, and my upbringing was a lot like yours. My family really respected medical expertise. Being white, male, and middle class, I had pretty good reason to. The past century has seen huge advances in medical science and life expectancies have grown and there are new technologies, vaccines, new surgical methods, all kinds of things.

And you want people to think about the underside of those developments a little bit more, though, talk about that.

MEGHAN O'ROURKE: Yeah. So you know, as I say in the book, I'm a believer in western science and evidence-based medicine, absolutely. And evidence-based medicine has brought us the longer lives and decrease in child mortality rates that we enjoy in our world.

The one downside of the pivot toward a highly technological, highly evidence-based system that is based on the idea that bodies behave the same way is, well, all of us have extremely individual immune systems. And we don't know that much about them. And it's hard to measure the effects of, say, a virus on different bodies and different immune systems easily.

So in our measurement-based, algorithm-based system, if you have a body that doesn't behave the way medicine expects it to, you're kind of out of luck, right? So I use this term in the book, I say, you know, what I realized was that I was in a body that lived at the edge of medical knowledge, to try to point out not that I'm rejecting medical knowledge, but that if you happen to be kind of situated on that map, where medicine is still needing to do tons of research, as it does need to do into the immune system, you're kind of, you're in a bad place. Because medicine loves to measure and it wants your body to act like other peoples. And in fact, tests don't always turn up what's wrong with you. And your lupus could look really different from another person's lupus, right? And it could take ten years to show up on a test.

As one researcher put it to me, he was like, “By that time, the train’s already off the tracks,” right? We need better testing and better interventions earlier. We need to listen to people with illness reporting their symptoms much earlier. And medicine doesn't quite know how to value patients’ testimony because they consider it subjective.

BLAIR HODGES: Even though—[laughs]

MEGHAN O'ROURKE: You're the expert in your body in some way!

BLAIR HODGES: Yeah! You're the one that knows. I mean, you also talk about how Western medicine kind of sees three categories of illness—the real and biological, the all-in-your-head psychological, and then the biological that's kind of worsened by stress and the mind, right? And is that something that you—I mean, did you experience that as people were trying to diagnose you? Where did you arrive at those categories?

MEGHAN O'ROURKE: Well, you know, to write this book, I really wanted to contextualize my experience and not have it merely be a memoir, but have it be a book that answered the question of—you know, it took me more than a decade to get a diagnosis, but we live in this hyper diagnostic age where you sometimes almost have to fend off diagnoses, right? So I thought that was really interesting. Like, why was it so hard for me to get a diagnosis?

And it was all the more interesting because I realized I was not alone and that there are millions of Americans like me. So that raises this fascinating cultural question. And that led me to really think about disease categories and do a pretty deep research dive—I'm a journalist by training—into the history of disease, the history of medicine. And what you quickly realize is that the way medicine as a discipline conceptualizes disease, again, leads some things to be more visible to them than others. And so what's very visible to us after the advent of germ theory is the particular pathogen that comes along that we can see in a lab—like SARS-COV II, like influenza. We see it, we can measure what it does to people's bodies, we categorize it and then we say that's a disease.

We also have made profound advances in our understanding of mental illness and have destigmatized mental illness, we accept it as a category—well, we've started to destigmatize it, I should say.

BLAIR HODGES: Right.

MEGHAN O'ROURKE: We've accepted it as a category of disease. But what it leaves in the middle is all these diseases that are often chronic illnesses that respond to lifestyle intervention, and that can be exacerbated by stress, and actually by trauma and other psychological events. But it doesn't mean they're primarily in origin a psychiatric illness, and we don't have a great framework for thinking about and talking about those diseases.

So if you're a young woman, and you're experiencing these relapsing and remitting vague, subjective symptoms like fatigue and pain, the doctor will probably say to you, as they did me, you know, “Is your life stressful? Do you have anxiety?” And I would say, Sure, yeah, I have a busy job, and who's not stressed and anxious? [laughs] And then they'll say, “Okay, I think you should see a psychiatrist,” rather than thinking, okay, maybe this is someone with an incipient autoimmune disease, which we know is worsened by stress. So we need to come up with this more nuanced gray area where we think about diseases.

There's a lot of them, actually, in this category. Weirdly we know that, we accept that heart disease is affected by stress, right? We accept it in certain areas, we just need to do more, I think, explicit categorizing and talking about these diseases in the middle.

BLAIR HODGES: It reminds me, I had shingles a few years ago, and I still—it was on my face and I have neuralgia still sometimes, especially when it gets stressed out, I can feel, I call it my Spidey sense now.

MEGHAN O'ROURKE: Totally, like the tingles.

BLAIR HODGES: Yes! But it's directly connected to my mental wellbeing at the time, but it's a physical manifestation of that which happened because of a virus I had.

MEGHAN O'ROURKE: Absolutely.

BLAIR HODGES: Also for you, as a woman too, as you know, medical science has long been more skeptical about women's reports of what their bodies are doing. And there's a sexism or misogyny that's kind of inherent in some of this, going back to the word “hysteria,” right? So these mental issues.

Did you feel gaslit at all at first? I mean, if your doctor is telling you like, “oh, maybe it's all this,” but you're experiencing physical symptoms and having these problems. Did you buy into that at first, were you like, “oh, okay,” did you kind of go down that path?

MEGHAN O'ROURKE: I did. I mean, I really accepted—one of the things the book tries to do is show the effects of what we now call medical gaslighting on me as a young woman. I really wish the term “medical gaslighting” had been around in the late 1990s and early 2000s. Because that was what happened.

It was benign, you know, it wasn't as malign as gaslighting can be. My doctors were well intentioned, but they were stressed, they were busy themselves. And again, they had inherited, as you alluded to, this paradigm, this kind of intellectual framework we've brought with us since the nineteenth century if not before, in which women's symptoms that are hard to pin down, and include pain and fatigue, are often seen as signs of an underlying psychological problem—often one that they themselves have repressed.

And this framework is set in place in the advent of the epidemic of diagnosing hysteria in Victorian England and America, where doctors at first actually thought it was an organic disease. At first they thought it was a real neurological disease, they’d just discovered the nervous system. But interestingly, as they failed to be able to treat it, they decided, “No no no, it must be something about these women's minds.”

And it happened at the same time that women were pushing for the vote. And you can really track the desire to kind of reread women's illness as psychological with doctors inability to treat them and their pushed for more rights. And then Freud comes along and Freud says, “Hey, you know what? The more someone says their symptoms are real, but we can't explain them, the more they're probably repressing.” So women in a stroke become these very unreliable testifiers to their own reality. And in fact, the more you insist on a reality of something, the more that can be read as your deep repression of something you're not acknowledging.

Learning about the immune system – 16:30

BLAIR HODGES: You lay this out with your actual experience. You are having all these symptoms, you go in, and you finally get this diagnosis of Hashimoto’s. There are some other guesses, you know, and doctors are basically saying there's some kind of autoimmune problems. But even then, it didn't seem like the doctors were educating you much about your immune system. And so you were going on your own and reading stuff online and seeing different specialists, you were “doing your own research,” even though that phrase has been mocked a little bit and that can be kind of problematic.

But you were kind of left to do that a little bit. And you learned a lot about the immune system yourself, and then there was this medical student at Harvard who you reached out to.

MEGHAN O'ROURKE: Yeah.

BLAIR HODGES: Let's talk about what you learned from this medical student to give people a basic primer about how the immune system works.

MEGHAN O'ROURKE: Yeah, well, so I had this wonderful research assistant at Harvard, I was at Harvard. I was given a grant to work on this book. And I think a goal of the book was, as you say, I was kind of told, “You have a thyroid problem.” But then as I read about it, I was like, “No, I have an immune system problem that's manifesting in my thyroid.” And those are two really different things, right, because one is systemic, and the other is local.

I think this is a journey many patients or people who get diagnosed with autoimmune disease go on, where you realize that if you inform yourself about autoimmune disease, you might be able to make lifestyle changes that help you. But there's not a lot of science around it and it's very individualized, which is why medicine struggles with it.

So anyway, I wanted the book to be able to help people discern some things that are really kind of vetted and true about what it is to have an autoimmune disease. So I turned to my research assistant Caleb. But you know, he gave me a primer that I won't be able to fully reproduce here.

But basically, you know, we have an innate and an adaptive immune system. We have an immune system we're born with, and then one that responds to the pathogens and things that we're exposed to. And it's very sophisticated, right? It's this very sophisticated defense system. And it's highly personalized. And it's so complicated, that things can go wrong, right? That your immune system learns to recognize a pathogen it comes across, and then it kind of—you have cells that are in your sinus and your bone marrow, and they become educated, and some recognize specific pathogens.

But along the way, especially as we're exposed to lots of chemicals and things that we don't really know what they do to our bodies, sometimes we make our little cells think, “Oh, a piece of dust is a pathogen,” and then you've got allergies, or dander from a cat is a pathogen, and then you get an allergy. Sometimes it starts to see that, “Oh, I think your thyroid is a pathogen,” and it starts attacking it.

So that's what I mean when I say it's not a thyroid problem, it's the immune system has decided, has misread, what it needs to attack.

One thing that's really interesting is a lot of people I encountered on message boards interpreted this as a sign that they themselves were living a kind of inauthentic life. Like, if their defender was attacking them, it was somehow their problem. And one of the things I really tried to unpack is that I don't think there's any reason to believe that's true. [laughs]

Just as we have cancer as a disease, it's really a disease of personality anymore. You know, I don't think it's our fault individually that our immune systems are attacking us, it's much more attributable to changes in the environment in various ways.

BLAIR HODGES: You point out all these causes, there could be genetic things, environmental things. You also talk about the microbiome and advances in understanding about that. Maybe talk about that for a minute.

MEGHAN O'ROURKE: Absolutely. So one of the things I realized in my, you know, rabbit hole journey into why autoimmune disease is rising, and why was I experiencing autoimmune disease, is that researchers think the rates are intimately connected to changes in what's called our microbiome, which is the community of bacteria that live in our gut, and also now we know in our skin, and in fact, probably in many other organs, too, but we're most aware of them in our gut, where they help us digest food, right?

And there is an idea that there's a set of—there's not one ideal microbiome, but you know, in preindustrial countries, you have the microbiome that's suited to your environment, it basically helps you digest food that you eat, right? But as we industrialized our food system and began to eat more processed foods, we have changed our microbiomes at a really radical rate, and we're not feeding those bacteria, they need food too. And you want to feed the so-called good bacteria and not let the so-called bad bacteria overwhelm them.

Some of the researchers I spoke to, like object to good and bad. They're like, it's really about a community. Like one of them give a great analogy of a kindergarten class. Like if you have a really good teacher in the kindergarten class, the really rowdy obstreperous boy is kind of kept in check. But if that teacher disappears, and like another rowdy boy comes in and soon all the good kids become wild.

So it's not so much good and bad, it's really about this community, right? Like you want a kindergarten teacher in your microbiome to help all of these pathological bacteria, because the bacteria change their genetic expression, it's really wild, they change what they do, they change how they act. So you need to eat, we all need to eat a lot of like vegetables and fruits to help that, but we don't all do it, and also the soil has changed.

The point being, there these radical changes in our microbiomes over the course of a hundred years, and it means that each generation, because we inherit them from our mothers too, when we're born, if we're born vaginally, like we're not getting—each generation is having a really changed microbiome.

And this is one explanation for the dramatic rise in food allergies. Because each generation is inheriting a kind of more impoverished set of microbiome to help us digest. And then that creates, it's complicated, but that can create inflammation in your gut, which then leads things to get into your bloodstream where your immune system starts to mistake them for pathogens. And, for example, gluten molecules may look like thyroid, you know, who knows, but there's things like that, where it's like, you end up in a world of food sensitivities, autoimmune disease, general lethargy, or your body just stops functioning as well as it should.

The invisible kingdom – 22:37

 BLAIR HODGES: Yeah, so as people can tell, this is really complicated, there are genetic, environmental, microbiome issues—all kinds of things that can affect the type of illnesses that you describe in your book, and that so many people experience. And because medical science has a really hard time pinning it down, there's skepticism around it, or it takes a long time to get accurate diagnoses, or sometimes those diagnoses are just off base.

So your book is talking about this invisible kingdom, as belonging to this group who's experiencing these things. And you're painting a community of people that are experiencing this, trying to call our attention to all these citizens of this kingdom that walk among us that we might not be aware of. And I think that's a beautiful metaphor that you introduced; this idea, beautiful and tragic, that this invisible kingdom exists.

MEGHAN O'ROURKE: Yeah, it's funny, the title came to me last, but in a way it grows out of this moment I experienced pretty early on in my illness journey where I was looking for answers, and I had seen a doctor, and she had really patronized me and kind of rushed me out the door, it was a specialist I'd been recommended to. I really wanted to have kids and she was kind of like, “Well, you should get on that.” And I was like, “Well, I'm not very functional,” [laughter] it was a terrible, terrible encounter. And I was, you know, kind of tears welling up in my eyes as I left, and I felt just so incredibly lonely, right? Like, no one was ever going to help me get to the bottom of what was wrong.

And I remember just in that moment of loneliness, really having the insight that as lonely as I felt, there had to be millions of other people like me, right? I'm a well-off, educated white woman in an urban area with great access to really good doctors, great health insurance. And I couldn't get care, there are many people—you know, I had the best possible access. And so that told me that there are a lot of people who don't have that same access to great doctors. You know, maybe you're in a rural area, it takes hours to get there. So it just was really clear in an instant, this is a national problem. This is a problem, you know, it's a social problem, it's a socio-political problem, it's not just my problem.

I think that's where this idea of the invisible kingdom was born in my mind, because I thought, well, if only we could all come together, you know, together, collectively, we could become visible, because this is just an enormous group of people who are all suffering and who need to be seen and recognized.

BLAIR HODGES: And you're also dual citizens, because you belong to that kingdom, but you're also existing in a place where there's people that aren't experiencing what you're experiencing. So spouses or partners, or extended families.

MEGHAN O'ROURKE: Yeah.

BLAIR HODGES: How did your experiences begin to impact those relationships? As you were trying to figure out what was wrong as you were experiencing illnesses. How did how did your relationships change?

MEGHAN O'ROURKE: One of the things I tried to be really honest about in the book, because I want the book to be kind of like your best friend who's gone through what you've gone through, and is just telling you everything. So I try to be really honest about the impact on my friendships and on my relationship with my partner, my husband.

And you know, it was really hard for us at first because, your partner or your family members are going through their own things, and you have a lot of needs, and you don't understand what's wrong and you don't have recognition from doctors or validation. In my case, I had no words for what was wrong. I didn't have a diagnosis. So I was rendered doubly invisible, right? The symptoms were hard to see, and they couldn't be named. So I was really living in this kind of neverland. And that was incredibly stressful for my partner as well as for me.

I actually interviewed him for the book, because I thought it would be really interesting to have his formal sense of things. And he said something really insightful that I always tell people, which is—I think, I hear a lot from patients who say, just, “My partner doesn't get it, how do I get them to get it,” and I sort of am like, “I don't know if we can, they'll never get it” [laughs]. But I think one thing they're experiencing, that Jim said to me was, “You don't know how stressful it is to watch the person you love suffer, and not be able to do anything about it,” right?

And so one thing that we talk a lot about in our house is like “doing” might not look like “solving,” right? And this is something I often say to friends. And when I get this question of how do I support my friend or my mother or my daughter, you know, the support probably isn't gonna come in the form of solving or answers. The support is going to come in the form of living side by side in uncertainty and witnessing it and validating it.

BLAIR HODGES: I think your book will be really valuable for people who live with people that are experiencing chronic illness, because they're going to recognize a lot of things. But you're so thoughtful, and the people you talk to are so informed, that there's a lot of catharsis there. I really recommend this to people who are experiencing chronic illness and people in their orbit, because it's eye opening, and it's thoughtful.

MEGHAN O'ROURKE:I really wrote it for people who are family members as well, you know, I really did have the family members and friends and loved ones in mind. Yeah.

Approaches to medicine: alternative, conventional, and integrative – 27:58

BLAIR HODGES: That's Meghan O'Rourke. She's Senior Lecturer in English and Creative Writing at Yale University and editor of the Yale Review. She's the author of the book The Invisible Kingdom: Reimagining Chronic Illness. She has also written the bestselling memoir, The Long Goodbye.

Alright, Meghan, let's talk a little bit about your journey through the medical landscape a little bit more. You're a skeptical and thoughtful person, as we said, you accept the expertise of the mainstream medical community, but autoimmune diseases are still controversial in the medical community, there are disagreements over them, there are different theories about them, about what they are, where they come from, how to treat them. And so through your journey, as a skeptic, you also found yourself seeking some alternative medical approaches that—I mean, my jaw dropped! [laughter] Let's talk about some of these experiences you had.

MEGHAN O'ROURKE: Yes. And first, I should just say that, you know, the fact of autoimmune diseases is not contested by the medical community. What is tricky is, when do they start? When do certain markers that don't quite coalesce into a known disease indicate disease? When do they just indicate our bodies are always different?

The diagnosis I have that really is the most controversial is Lyme disease, which we can talk about too. But I think with the kind of murk and uncertainty around autoimmune diseases, are there ways to help live with them that aren't through, you know, just administering pharmaceuticals. That's where the disagreement and the controversy comes up. And that's where I waded into this “world” [laughter] of alternative medicine.

And, you know, I always like to tell people: read the chapters about this in the book, because I'm more articulate in the chapters than I feel like I can ever be on the fly, because it's such a complicated subject.

But part of what I try to do in the book when I talk about both conventional medicine and alternative medicine is to show that both are flawed, that even conventional medicine is not always evidence-based, though it should be, and that there are a lot of interventions that conventional medicine routinely practices that may be, or are shown to be, harmful, right, to people—or we overly intervene and you know, drugs have toxicities, and C-sections have complications when they're not needed, et cetera.

I'm really interested, though, I think, in just getting beyond the usual Western or conventional medicine versus alternative medicine. I think the conversation we need to have is more nuanced. I think it needs to be more around: How can we help support chronically ill people as dimensional humans who have an emotional experience of their illness, and lifestyle changes they may need to make?

And I personally found what's called integrative medicine, which brings together alternative and conventional medicine and tries to bring evidence to alternative medicine, really life-changing when I encountered it. It was integrative doctors who helped me see what was going on in my body as a pattern, not these random, disconnected things that were happening to different body parts but more as like a holistic system that was under strain. It was integrative doctors who said, “Your body is acting like it's dealing with an infection,” which turned out to be true. So I found it was really helpful.

BLAIR HODGES: I want to also say, just to add to that, you point out that you finally felt seen. There's an efficiency and a strictness that makes sense in some ways for a lot of conventional doctors and providers, they're trying to get through patients and trying, you know, they're busy, and so the doctor might come in the room with you and talk to you for five minutes, and then go, and not really spend time with you. But when you started going to some alternative medicine practices or some integrative specialists, you felt seen, they would sit with you for a long time and listen to your story and get to know you as a person and what was going on, and it kind of opened my eyes.

MEGHAN O'ROURKE: Totally. And thank you for—that's like the most important part, isn't it? And right, I felt seen, and I felt like a whole person. You know, I end up saying, I think one reason people turn to alternative medicine is that if you think of medical systems metaphorically, conventional medicine tends to treat your body like a car with different parts that can be kind of radically replaced, and we can do amazing, cool things to them.

But if you're chronically ill, and you're dealing with this day in and out, you kind of want someone to help you feel like more than a car, right? Like if I tear my knee, it's fine, I'm happy to be a car. I go in, my surgeon is amazing, she fixes me, I come back. But if I'm not going to get better from that, then I need another kind of story. And what alternative medicine gives you is the story that your body is more like a garden, I say, where you are part of an ecology, your body is an ecology. It's within a larger ecology of the world and the globe. And I think that, that metaphor maps on to the kinds of questions we have as people living with illness about identity, value and meaning, like, where are we going to find meaning in a more limited life, if our life has been limited? You know, I used to be an avid athlete and runner, I can't do that anymore. It sounds small, but it's like a big change in your life. Right?

BLAIR HODGES: Right.

MEGHAN O'ROURKE: So I think alternative medicine really performs this kind of healing ritual. You're often in a quiet, calm room with someone who listens and sees you. And I think that has material benefits. What gets trickier is that it's not all based on evidence, right?

BLAIR HODGES: And people can take advantage of it, too.

MEGHAN O'ROURKE: I was going to say, as there surely are, even in conventional medicine but there's more things in place to prevent them, there are charlatans out there, right? And I tried some things that I was desperate, and I saw some people who I didn't trust, and I let them do wild things like—

BLAIR HODGES: The blood cleaning thing was shocking to me.

MEGHAN O'ROURKE: Yeah! So I always say it was a little bit like when Donald Trump was saying, if you have COVID just use sunlight and bleach to get better. And that's basically what I did. No bleach, but it was like they took blood out of my body, they put UV into it, and they put ozone into it. And they put it back in. Extremely risky, because I could have gotten any kind of infection.

BLAIR HODGES: You seemed disconnected from your body, though. Because you were saying in the moment, you're even sitting there listening to this guy, thinking “This guy is a quack,” but also thinking “I need help. I'll do anything at this point.”

MEGHAN O'ROURKE: Totally. And one of the things I really want to try to explain is, it's not that people are, it's not that I was like an idiot, right? I wasn't doing it because I was just like, “Great! This fix everything.” Often when we talk about sick people, we talk about them as if they're sort of like slightly dimwitted children, you know? [laughter] I'm trying to animate and make the reader really understand like, no, if you thought your life and everything you valued about it was slipping away, you would become, rationally, increasingly willing to take risks, right? And my willingness to take risks increased with how diminished my life was. Because at a certain point, I was like, I no longer have a life that feels worth living. So getting an infection from this blood cleaning is not the end of the world, because I'm not sure I can stay alive like this.

You know, of course, in retrospect, I feel very, very differently. But that's one of the things I really hope people will understand about patients’ appetite for experimental treatment. I think it's quite analogous to the “right to die” movement in a way, you know, that when we're not dying, when there's something we pull back from the reality that the desire to die shows us. I think, similarly, we pull back from patients’ desperate willingness to try anything, and we kind of are like, “no, no, no, you know, you're not being rational!”

And I want to push back on that and say, well, there's a certain amount of rationality in it. That said, we do need ways of thinking about charlatans, and keeping people safe, and not exposing people to—you know? So I'd love to see a more open conversation between conventional medicine and alternative medicine, one that sort of understands why patients turn to alternative medicine, why things like acupuncture and body work are so helpful. You know, the more dangerous things, that's like, we almost need a grading system.

BLAIR HODGES: It reminds me of David Foster Wallace where he talked about someone experiencing suicidal ideation and that it didn't make sense. Like, why would you do that? That seems so—or someone would say “I'm not that brave,” or whatever. And the character says, “well picture yourself in a burning room. And the fire is just getting you. And there's a window, and you can go through that window. It’s gonna be a very tempting window.” And I kind of saw you in that moment as like jumping out the window. [*see editor’s note at the end.]

MEGHAN O'ROURKE:Oh, a thousand percent yes. I even have this metaphor in the book of myself being kind of trapped in this dark room and wanting to go through the window outside, and you know that isn't—that's perfect, I'm gonna borrow that. Thank you. That's a great quote! [laughter]

Nadir – 36:57

BLAIR HODGES: Well, it's David Foster Wallace. So yeah, there you go!

I’d like to ask you to read a section here. There's a low point in the book of many low points. I want to have you read from that. This is on page 186.

MEGHAN O'ROURKE: Sure.

BLAIR HODGES: This is in a chapter called 'Nadir'.

MEGHAN O'ROURKE: Great, okay.

By late January 2014 my headaches, brain fog, and joint pain had gotten worse and tiny bruises bloomed all over my legs and arms. I fainted several times. A black ocean, it seemed. kept crashing over me so that I couldn't catch my breath. I could no more touch the old delights of my life than a firefly could touch the world beyond the jar in which it had been caught. I was only 37. I began to feel terrified of staying alive like this. What if I could get my health back, but only at the cost of having no sense of pleasure or interest in anything? Before I got sick, my work made my life meaningful. I wanted to be what Jenny Offill describes in her novel Department of Speculation as an art monster, a woman who gives herself over to her art with an obsessiveness that forsakes the more conventional realities of a woman's life. When I got sick, my hunger for art remained intact, but my brain would not cooperate in helping me make and consume it.

Until recently, as sick as I was feeling, poems and art still had their shine. But that February, poems that used to make my limbic system shiver felt almost like news of a world I couldn't join. One morning I reread John Ashbery's “A Blessing in Disguise”, a poem that had always stirred me with its avocation of the way desire makes us alive to the world.

I, in my soul, am alive too.
            I feel I must sing and dance, to tell
            Of this in a way, that knowing you may be drawn to me.          

        And I sing amid despair and isolation
            Of the chance to know you, to sing of me
            Which are you.  You see,
            You hold me up to the light in a way             

        I should never have expected, or suspected, perhaps
            Because you always tell me I am you,
            And right. 

But as I read it, the words felt remote. The next day, I began deleting my writing files. I went online to my financial accounts and checked that I had labeled beneficiaries. I sat with my computer and went through, file by file, deleting spare ones then went to the cabinet where my journals were kept. I hesitated then pile them on a corner of the office shelving to bring out later with the garbage. It is hard to write about this time, but it would also be false to suggest that my illness had not at this point, two and a half years into feeling that I had the flu every single day, led to despair about whether I could go on without at least the prospect of my suffering being seen.

For those weeks, I felt the depression at one state that many chronically ill people confront at some point in their illness. Research suggests that roughly 1/3 of people with a serious medical condition experience symptoms of depression. In no way do I think or want to suggest that depression was the root cause of my symptoms or my illness. Rather, in retrospect, it is painfully clear that the invisibility of my illness was one of the most challenging parts of my suffering, wearing my resilience down. I've always been a social person who thrives on deep connection with others. Like many type A personalities, I was willing to work extremely hard and accommodate myself to a great deal of pain, if a doctor just told me what to do and expect, or if I knew that my illness was being meaningfully researched. But the near total absence of recognition of how sick I was confounded me, it rendered my suffering meaningless.

BLAIR HODGES: Meghan, when I got to this part of the book, it stopped me short. I have to say, I mean, this book is a stunning meditation about human identity. Like who am I? Who are you? And when you get to this point, when suffering becomes so prolonged, and so interminable without a light at the end of the tunnel, it seems like you almost were questioning your very like—what am I? What is existence?

MEGHAN O'ROURKE: Yeah, no, absolutely! And thank you for having me read that passage. I've never read it out loud. And it's emotional to read it, actually.

It was one of the last parts I wrote, because I thought, “There's something I haven't been honest about in this book.” You know, when I, whenever I finish a piece of writing, I go back and I think, well, what haven't I said because I'm protecting something, and I'm embarrassed or feel shame around something. And it was that there was this moment where I really questioned whether I could go on.

And I thought a lot about whether to include it, because so often, you know, invisible illness or poorly understood illness is read as being entirely shaped by an underlying depression. And I'm really pushing against that in this book, not to undermine the importance of recognizing depression. So I wanted to really thread that needle and explain with nuance that, you know, there can be depression that goes along with this, but I didn't think it was the cause.

And, you know, the thing that I try to get at here that, I think if there's one thing I learned about humanity, or existence or life from being sick, it was that, you know, the great joy of being human is having a sense of meaning. And I think that sense of meaning really comes from our social connections to others, you know, whether that's just your family or a brother or your workplace, right, that we find meaning in our lives in all kinds of ways. That meaning doesn't have to be grand and philosophical, it can be small acts of kindness.

But I wanted to—I could accept that my life might be over as I had known it. And that was a tragedy, it would be hard for me to accept. But I couldn't accept that my life as I had known it was over and that that loss was meaningless because no one was interested, and no doctor was curious, and no researcher was curious. That was what I couldn't accept.

And that, I think, is why I just want the message of this book to be that the importance of validation and seeing suffering is—it does more than anyone can know. And one thing I often hear from doctors and loved ones is their frustration and not doing enough. And I want to say that recognition, that validation, that is an enormous act of human meaning and a generosity of offering witness. It takes a toll on those around us, let's be honest, but it's a profound act. And I think it's really important.

BLAIR HODGES: And I think it's it sustains our identity. One thing you really highlighted for me that I've experienced on a very small scale is that when you're so sick, you don't have time to grieve, you don't have space—like grief itself can be a privilege, when you're well enough to even entertain grief. And when you're not there, if someone's by your side, or someone can check in with you or bring you some food or touch your arm or hug you or tell you they love you, even though you've lost even the ability to grieve at that moment, they're sustaining your identity, they're holding your memories, they're holding your love.

I get choked up thinking about it too, because it was so moving to read your experience and be able to relate—at least on a small scale—that who we are as people really is sustained by the people who love us, even at our very lowest. And that's what identity to me is it's like this co-construction. It's like a group project.

MEGHAN O'ROURKE: Absolutely. I mean, I think that was the huge act of transformation and learning for me, you know, I had really internalized this individualism, and just realizing that dependence on others and being there for others, it sounds trite as I say it, but when you've gone through it as you know, you’ve had a taste of it, I've had—it's profound, right? It's just profound, and you're—that co-construction, I love how you put it.

Telling stories about illness and suffering – 45:29

BLAIR HODGES: You quote Arthur Frank, who said that the importance of witnessing and listening and believing, Arthur said “listening is hard. But it's a fundamental, moral act.” There's, there's a moral edge to that.

MEGHAN O'ROURKE: Yes.

BLAIR HODGES: Now, talking about making meaning, that's really important to you. Let's conclude by talking about some of the narratives that people make out of illness really quick.

So first, there's the restitution narrative. Health is normal, illness is an obstacle, the person fights and recovers. And we've read a lot of stories like this. The problem is chronic illness doesn't, doesn't fit that arc. So you can't write a restitution narrative.

MEGHAN O'ROURKE: Yes.

BLAIR HODGES: There's the chaos narrative, which is kind of an anti-narrative. There's no resolution. It's causeless, there's confusion. It's just kind of dwelling in the gunk of it and never going anywhere.

There's the quest narrative, which tries to synthesize things into meaning. And it can be disturbing, though, people can be expected to be improved by illness, it can kind of make illness into a tool that's actually really good and that's great, and it has purpose.

You're kind of going for a fourth type, a wisdom narrative. So maybe just spend a second to talk—and you've touched on a little bit—talk about the wisdom narrative.

MEGHAN O'ROURKE: Well, so those three narratives are really from Arthur Frank, who you just quoted, he's a sociologist of illness, and those are his categories. And they're so incredibly helpful and illuminating.

And then I talk about the wisdom narrative, but I sort of argue that there is a wisdom narrative imposed on us that I reject, and that I think there's this, right, this other sort of subversive—it's like the subversive window opened with the narratives that I'm going for. But I argue that there's this way in which people those of us who are sick, or chronically ill, or who have near death experiences to be, you know, as Arthur Frank says, kind of enriched or nobled by our illness, like you get over it. Or if we're not going to get over it, they want us to be enriched. Like one friend said to me, “Think of all the things you've learned,” and I was like, I would rather not learn stuff! [laughter]

I just want to make space for like, we don't all experience our illness with grace. And we don't all come out of it with some ennobled enriched sense of who we are. I sort of had the image that it was like, sick people were being asked to kind of Marie Kondo the emotional lives of others, you know? For us to come in and kind of clear away the clutter and be like, “here are the human truths,” like, “I've gotten it through my illness.”

But that was not my experience. And one thing I think is important to point out is that the whole book is about arguing that we are responsible for one another, and that a lot of illness is treated as a deeply individual problem in America. But as we've been touching on the social issues, so I think the real wisdom narrative, or the kind of subversive wisdom narrative, is just that illness can really suck and there might not be anything ennobling, and that might be what we all learn from it. Right? As well as, sure, each of us, if we get well enough, can sort of say this is what's more important to me than this. But we might not get to that place.

BLAIR HODGES: That's Meghan O'Rourke, a senior lecturer in English and Creative Writing at Yale University. And today, we talked about her incredible book, The Invisible Kingdom: Reimagining Chronic Illness.

Meghan, I really do have to say your book is incredible, a stunning mix of personal memoir, of research, there's philosophy, you're able to weave all these things together. Congratulations. This is a fantastic book.

MEGHAN O'ROURKE: Thank you, that means a lot. Thank you.

BLAIR HODGES: Alright. And also, congratulations on being the first person to make me cry on my own podcast! [laughs]

MEGHAN O'ROURKE: Oh my god, right, keep it real! [laughter]

BLAIR HODGES: All right. We'll be right back for best book recommendation.

Best Books – 50:59

BLAIR HODGES: It's Fireside with Blair Hodges, and we're talking with Meghan O'Rourke.

All right, Meghan, it's time for the best books segment. This is when our guests recommend a book that's moved them, that's been important to them, something that's changed their life or just something they really want to recommend. So what did you bring for us?

MEGHAN O'ROURKE:Since we've been talking about chronic illness, and the difficulty of making yourself visible and articulating these murky experiences, I wanted to recommend a really short fragmentary book that I found a lot of solace in when I was sick and trying to start writing my book, and thinking about how to talk to others.

And it's called In the Land of Pain, by the nineteenth-century French writer, Alphonse Daudet, which might sound distant, [laughs] but he was a novelist who had syphilis at a time when it wasn't well understood. And he ended up with tertiary syphilis. So it was neurological symptoms that roamed the body. And this book is really just his notes toward trying to write a book about his illness.

But because there's all these fragments that has the effect of enacting what it's like to be ill, which is that you can't bring all your thoughts together, and you're searching for understanding and you can't get there. And he's just—because he’s a novelist he's so smart about the human condition and so insightful, and I'll just give you a taste of one thing he writes, which is, he says, at one point, “Everybody else will get used to my pain, except me.”

Tiny thing but actually profound, right? I think that's one of the things that's truest about chronic illness is that everyone else gets used to it and there are these days when it's fresh for you, and you just simply are not used to it. So I recommend the translation by Julian Barnes. It's a beautiful, fragmentary book. You can pick it up and read at your own pace. You can dip in and out, and it tells us a lot about what it is to be invisibly ill.

BLAIR HODGES: Thank you so much Meghan, this has been a real treat. I really appreciate you taking time to do this.

MEGHAN O'ROURKE: I was so glad we can make it work, and thank you for your patience I was really—this was a wonderful conversation.

BLAIR HODGES: Thank you.

Outro – 52:59

BLAIR HODGES: Fireside with Blair Hodges is sponsored by the Howard W. Hunter Foundation—supporters of the Mormon Studies program at Claremont Graduate University in California. It’s also supported by the Dialogue Foundation. A proud part of the Dialogue Podcast Network.

Alright, another episode is in the books, the fire has dimmed, but the discussion continues. Join me on Twitter and Instagram, I’m at @podfireside. And I’m on Facebook as well. You can leave a comment at firesidepod.org. You can also email me questions, comments, or suggestions to blair@firesidepod.org. And please don’t forget to rate and review the show in Apple Podcasts if you haven’t already.

Fireside is recorded, produced, and edited by me, Blair Hodges, in Salt Lake City. Special thanks to my production assistants, Kate Davis and Camille Messick, and also thanks to Christie Frandsen, Matthew Bowman, and Kristen Ullrich Hodges.

Our theme music is “Great Light” by Deep Sea Diver, check out that excellent band at thisisdeepseadiver.com.

Fireside with Blair Hodges is the place to fan the flames of your curiosity about life, faith, culture, and more. See you next time.

[End]

NOTE: Transcripts have been lightly edited for readability.

*EDITOR’S NOTE: The David Foster Wallace quote is from Infinite Jest, page 696:

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.”

As David Gangloff has argued, this description is best understood as a description of how people feel, not as an argument about how a person should act. If you are experiencing suicidal ideation, there is help for you. Call the national hotline now. The number is 988.