Zibby is joined by author and editor Meghan O’Rourke to discuss her latest book, The Invisible Kingdom, which took her nearly a decade to write. The two talk about the three major problems with medicine that have made it so hard to diagnose chronic illnesses, particularly in women, as well as how Meghan wanted to portray her own invisible illness journey as hopeful without sugarcoating the truth. Meghan also shares how Covid has impacted the ways in which our culture approaches chronic illness, her experience as an editor at The New Yorker and Slate, and what project she’s looking forward to working on next.

Transcript:

Zibby Owens: Welcome, Meghan. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to discuss The Invisible Kingdom and your work and your life and everything else.

Meghan O’Rourke: I am so excited to be here. Thanks so much for having me.

Zibby: Sure. I’m sure most people listening are familiar with your best-selling book already. Just in case, would you mind describing what it’s about and how you decided to share all of this and do all the work on it and just all the good stuff?

Meghan: This book has been almost a decade in the writing. It’s called The Invisible Kingdom: Reimagining Chronic Illness. It weaves my own story of getting mysteriously sick over really quite a long time, more than a decade, first subtly and then quite ill, with a through line of reportage about, how did we end up here where so many people who have these kinds of illness that I’m talking about, like autoimmune disease, fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome, or ongoing effects of Lyme disease, etc., now long COVID — why is it in this hyper-diagnostic age that we live in that it’s so hard for patients like us to get diagnosis and treatment and to be heard and seen and witnessed? That’s the book. It’s this personal story and then this reported story about, what in the history of medicine brought us to this moment where as we live through what I call a silent epidemic of chronic illness of these sorts, nonetheless, so many people, and many of them women, are having just extraordinary trouble getting diagnosed and treated and recognized? What I show in the book is that that adds to their suffering. It added to my suffering. It added to the suffering of many of the women I interviewed for the book and so forth.

Zibby: What is the answer? What is causing the chronic pain? Why is there this uptick of it? Why is it so hard to diagnose? Then what was your main takeaway?

Meghan: I think there’s three fundamental problems. I hope it’s just three. I think there’s three.

Zibby: Let’s start with those.

Meghan: We’ll start with the three big ones. One is that modern medicine, as we all know intuitively, but when you really dig in, it’s really there, is built on measurement, the idea that we can measure everything that’s wrong with the human body, and replicability, which is to say the idea that what happens when a bone breaks in a certain way in me, it will break a certain way in you. When influenza infects me, it will infect you in a similar way. This is the building block of what’s called the germ theory, which comes along in the nineteenth century and turns medicine from this healing-oriented art which was really practiced both by female laypeople, lay healers, and an emerging class of doctors who — we have all heard about bloodletting and these wild therapies they would give people, often very dramatic therapies because they didn’t really know how to help them. The germ theory comes along. Measurement comes along, microscopes and X-rays and eventually the MRI. It gives medicine these incredible tools that have really led us to live longer and healthier lives, but it’s all based on this idea, as this one researcher put it, Robert Koch, that basically, a pathogen should behave roughly the same way in everyone.

What we’re finding is that these diseases that I’m talking about are often — the illness itself is shaped by your immune system. The immune system is a highly particular and highly individual phenomenon. It’s your own personal history of your record of encounters with pathogens and trauma and so forth and pollution and childbirth, whatever it may be. That measurement and replicability model doesn’t work so well for autoimmune disease because you and I could have the same autoimmune disease, and it could manifest in really different ways. Then autoimmune disease itself is this huge category. I think we’ve all seen this dramatically laid out before us in the pandemic where we see that everyone responds to COVID a little bit differently. Some people are ending up sick for months even after a mild infection. That’s just the first problem. The second problem is easier to say. That’s just that we women have been treated, actually, poorly by medicine for a long time. Women’s testimony, it’s still often dismissed in medical doctors’ offices. There’s this whole legacy of hysteria, this tendency to see physical symptoms as signs of a secret psychiatric problem that can’t speak. It can’t speak itself, and so it speaks in the body. Also, making that even more complicated, we didn’t do much research on women’s health until pretty recently. Even through the 1990s, a lot of medical experiments were conducted just on biologically male animals. It turns out that women metabolize and process medications really differently. Heart disease is different in us than it is in men.

Zibby: It’s so crazy that they wouldn’t think to do that.

Meghan: Right? You’re like, it’s science. I’m a big believer in science, but the point I make is science is incomplete. It’s a process. It’s done by humans. We need that science to start getting more of us. The third problem is that very individuality of these diseases. There’s so many possible factors for how we can get disease. I think these diseases often come about as a response to what one researcher I talked to calls successive hits. It’s harder to see the origin of them. Maybe you get the flu. Something starts to go wrong. Then your mother dies. Then that stress further changes your immune system. It’s really hard to nail down the beginning. That makes us really uncomfortable. We start to psychologize diseases. One thing that COVID has done, though, is shown a really clear starting point for these diseases. We know that long COVID is connected to COVID. That’s helped us all see that there’s a real problem. Then that might be true for flu. There might be long flu. There might be long Epstein-Barr virus. That was a very long answer, but we got there.

Zibby: That’s okay. In addition to all of this analysis and science and medicine and all of the things you’ve uncovered, you were so generous in sharing your own experience. As a memoir — I hate to say junkie or addict, is the negative connotation — memoir lover, I always find myself in every reported-type story sucking out like a magnet, all the personal bits and pieces. Would you mind sharing with listeners a little more about your own story, particularly how it affected your relationships and all the other stuff?

Meghan: I had a story that turns out to be sadly common, which is to say that — I had began getting sick in my early twenties, I think right after we graduated from college. We spent a week at the Connecticut shore. A few weeks after that, I had a little summer flu. Then I started having all these strange neurological problems. I was working as an editorial assistant at The New Yorker. I had gotten this job. I was so excited. I was trying to start my life as an adult, which was both terrifying and just thrilling. On day three, I was working to work, and I started getting these strange electric shocks all over my body. It felt like someone was taking very fine needles and actually sticking them in my skin, kind of like a scene out of The Crucible or something. It was so severe. I had to stop and rub my arms and legs. At that point, really started on a quest to find answers. Went to doctors. My doctors were like, “We can’t really find anything wrong with you. You had one test that looked like lupus, but then we repeated it. It didn’t look like lupus anymore.” I went through this decade of really internalizing the idea that perhaps it was stress that was causing my symptoms. My doctors would say things like, “You’ve got a high-powered job. Maybe you’re anxious.” I was a little anxious. “You’re just pushing yourself too hard. Try to sleep more.” Reasonable advice, but didn’t get to the bottom of the problem. I coped for a long time. This is the part that I think many people can relate to, where you slowly realize that not everyone else is just exhausted at the end of the day.

Zibby: Really?

Meghan: We are now, but at I should’ve been able to get through the day without total exhaustion. Then my mom died of cancer, which is something I wrote about in The Long Goodbye. I was really close to her. I was thirty-two when she died. I was so devasted. I had been taking care of her, so I was quite run down.

Zibby: I’m sorry.

Meghan: I know. I got a virus and the day after she died, ended up in urgent care and went downhill, went off a cliff, which is really resonant and complicated to think about. Clearly, something was going on. Also, this huge emotional stressor, definitely, that was a triggering point for me. I never really got back. It got so severe that I ended up pretty much bedridden at one point, sort of faking it. I’m an optimistic, energetic person. I just couldn’t really admit it to my friends and family. My family knew. My friends knew a little bit. I was still working one day a week. I would go out. I would pretend I was okay. Then I would come back and collapse. At that point, really started this quest in earnest and started getting answers that I had an autoimmune disease, then that I had some neurological issues, something called POTS, which a lot of people who get COVID have where you get quite dizzy, and then finally, Lyme disease that had gone undiagnosed for years. The book recounts that I was very suspicious of that diagnosis and really unpacks the complexity of getting a tick-borne diagnosis. In my case, it seemed to really be an answer for the roller coaster I’d been on.

A big part of that roller coaster was the alienation and loneliness of both trying to communicate this to my partner or my husband who really believed me but couldn’t understand — there was a loneliness and a gulf there and a frustration. Then just feeling as someone in her thirties — my friends were going out. They were having children. They were building families. I felt frozen in time. It was quite heartbreaking. I really wanted a family. We were trying to have a family. I remember thinking, oh, my god, if I got pregnant, I might die. It was this unbidden thought because I was repressing so much. This quest, though, and finally the Lyme disease diagnosis meant that I finally got the help I needed and got, largely, better and was able to have two beautiful children who definitely exhaust me. That’s sort of the story. What I wanted in this book was to be really careful about showing both the hopefulness that you can recover to some degree from some of these conditions, but also, in an era where a lot of people still are sick for life, I’m really trying to write about the chronic part of chronic illness, not reduce the story to a tidy, and then I got better, and everything was great. I still live with these conditions. It’s still challenging. A lot of the book is about the stories we tell ourselves about illness too.

Zibby: Wow. I feel like your story has obviously just totally hit a nerve. There’s so many people out there who have the same thing. I can’t even tell you how many books I get pitched either for this podcast or for Zibby Books or whatever about people living with chronic pain of some, way — I’m very interested. I read them. What is this about? Why is now — is it just that we’re finally talking about it so much more or that it’s been repressed for so long or the validation is finally coming? What is it?

Meghan: I think that we are both starting to see, scientifically and culturally, the reality of these diseases. COVID has put that vividly before our eyes. We see that health-care workers, marathons, a whole range of people who are in the prime of their lives in their thirties are getting a mild case and then ending up really sick. It’s hard for us to ignore that. I think in a weird way, my book came out at a lucky moment. Also, part of what I’m trying to do in the book is — the reason we write, the reason we read is to understand, to have frameworks, to be able to say, here’s this murky thing. Oh, and here’s a word for it. Here’s a framework for it. The work I was really trying to do in my book, which I wasn’t finding in some of the other books I read that I loved and meant a lot to me, was to create this framework where you could follow my story as someone who might be sick herself or as a caretaker, a father, a husband, a cousin. It would offer a kind of explanation and also, on a literary level, be like a detective story and like a novel. It’s showing you the complexity of life with illness. To be sick isn’t just all doom and gloom. You’re still living your life. You still have hopes and ambitions. You laugh. You cry. I think right now, we are all hungry for that reminder because we’ve all, in a way, been living the life of a chronically ill person in the pandemic. We’ve all been quarantined and worrying and wondering. There’s some of that. There’s this huge problem. We’ve all been through a national trauma. We’re, hopefully, ready to look at the science and look at the reality of these stories and start coming toward a future where maybe we have more tools to deal with them.

Zibby: That’s very hopeful.

Meghan: Some days, I’m more pessimistic. Today, I’m just like, we can do it!

Zibby: Good. I’m going to get on your train. I’ll put my hands on your shoulders in the locomotion or whatever and follow along. I like that. Can we talk about your life as a writer too? Also, where did you grow up? What is your overall story? How did you get here and everything?

Meghan: I grew up in Brooklyn, New York. My parents came to New York from suburban New Jersey. They were both from large Irish Catholic families. My mom was the first daughter in her family to go to college. She went to Barnard. She was a lifelong reader, learner. She got an MA when we were in high school in science. She just loved to learn.

Zibby: Wow, that’s cool.

Meghan: She loved stories. She was not herself a writer. She, when I was very young, gave me a journal and said, “You should write down the interesting that you see and hear.” Her example was something like the girl with the mohawk and purple hair on the corner. It was the eighties.

Zibby: I, by the way, dressed up as a girl with a mohawk and purple hair for Halloween in the eighties. Just so you know. Very cool tights.

Meghan: It’s funny. I was just showing my kids pictures of mohawks. I remember being terrified of mohawks at their age. They thought it was so cool, and how they want them. Anyway, I went to a school called Saint Ann’s. My parents were teachers. I was really encouraged in writing from a young age. I loved writing. I loved reading. I was shy, so I read all the time and really had a conversion moment when I was about thirteen years old where I wrote a story and I was like, this is what I want to do my whole life. I had no idea that that was actually possible, by the way, but knew that I had that feeling of, somehow, this act of expressing something through a literary lens, through a story in this case, was what I wanted to do. When I went to college, I took a bunch of writing classes and just kept writing obsessively and ended up working in magazines. I worked at The New Yorker as an assistant and then an editor a long time, as a fiction editor and nonfiction editor. I always tell people that that was like going to graduate school because just the incredible writers and editors who were there and the — I felt like such an imposter, Zibby. You’re letting me edit a George Saunders story? You’re letting me edit Li-Young Lee?

I learned so much. The great thing about a magazine is you have the support of others. You learn from others. You learned to collaborate. I think that was a really key stage for me as writer even though I wasn’t writing a lot because I realized that writing didn’t just have to be lonely and perfect. I realized that a lot of these writers were handing in beautiful stories, but parts of them didn’t totally work. The jokes took too long to tell. It was this great education where it both taught me a lot about the craft of sentence-writing and also kind of got me out of any preciousness or fears I had about — trust me, there are still plenty of fears, but it helped me see that writing could be this process. It didn’t have to be perfect on the first try. I wrote poems during that time and then published my first book of poems and then went to Slate magazine for a while where I created a culture section in 2002, a very different era. The magazine was quite curated and smaller. We didn’t publish as much. Really fun and a wonderful education, how different mediums can lead to different kinds of writing. On the internet, you needed a kind of immediacy. You needed to speak through the screen to the reader in a way that in a book, you could be quieter and take your time. We read as different people in different spaces.

From there, just pivoted to writing. I’ve been writing ever since my mom died. I think that was the moment where I — I had been writing about grief for Slate. I just urgently felt that it was a book. Since that moment, I’ve really been mostly writing. I’ve come to Yale in the past couple years, which is where I went to college, to edit The Yale Review, which is a wonderful literary magazine that’s been here for two hundred years. I do that part time. I write part time. It’s sort of the best of both worlds where I get to — the hard thing about writing is it’s all about you. It’s all in your head. It’s all, am I making this work? If you have a bad day, that’s all you have to show for it. What I’ve always loved about editing and magazines is that you can take the tools that you love as a writer, which are attention to sentence, carrying about character, reading, and you can be a good reader for someone else. You can help their work. Instead of podcasting, that’s my contribution.

Zibby: I went to Yale too, by the way.

Meghan: Oh, yeah.

Zibby: I wonder if we were there at the same time. I think I’m probably older than you. Very cool. Amazing. What are you investigating now? What is your obsession?

Meghan: Right now, I’m in the really noodle-y, fun, exploratory part where I probably shouldn’t even say anything. I’m such a transparent person. I talk about myself in my books. I’m really interested in middle age right now. I’m really interested in what it’s like to be in this part of — I think it’s partly the pandemic too, but feeling, in time, you’re not at the beginning anymore. You’re not at the end, though. You’ve got quite a lot, hopefully, before you, but parts of your life are receding. You have to bring them back. I think part of it’s about being a mom and figuring out what to translate to my children about my past. Part of it’s that moment in time where you get a long view where you realize these things that are so intimately known to you will fade away. How do you think about that? The poet in me wants to reconstruct them all and hold onto them. I’m exploring all of that and a little bit how the pandemic froze us in time and now is releasing us back.

Zibby: Oh, my gosh, I can’t wait to read that.

Meghan: Oh, really?

Zibby: That’s exactly where my head is at these days. As every little thing changes — I’m forty-five. I just feel like this is the time where things have changed the most since I was a kid. I’m like, oh, okay, so now I can’t see. I swear to god, I’m losing hearing in my right ear, but I’m not going to address it. What is this wrinkle on my neck? Oh, okay, there’s nothing, really, I’m going to be able to do. I’m just going to have to sit here and watch as I deteriorate slowly.

Meghan: I know. Exactly. How do we make peace with that both physically and spiritually, essentially? Totally.

Zibby: It’s a tough pill to swallow. I’m not going to lie. I’m also like, why is everybody not talking about this all the time? This is wild. This is insanely wild. I didn’t feel like I got the manual when I turned forty, maybe even more like forty-four. For me, this year has been —

Meghan: — Totally. I just turned forty-six, so we’re right in the same period of time. Even the first few years of your forties, it’s like the late thirties. Then suddenly, you’re right, things start to change. There’s no manual. There’s not a lot of discussion of it. I’m always interested, in my work, in the places where we’re all going through something, grief, illness, aging, and we’re not really talking about it. I want my books to be that best friend who’s going to just tell you everything.

Zibby: If you need a subject, you can interview me. Not that there is a lack of women in their mid-forties or fifties or whatever. I’m glad you’re doing that because I find myself drawn to, oh, a memoir in midlife, yes. Tell me. I am in my midlife.

Meghan: memoirs of being much older and often, these memoirs written by young people. Not that much about midlife because it’s mid-story. How do you tell the story mid-story? I don’t know. I’m going to try.

Zibby: Plus, I feel like midlife was so — I feel like it needs a rebrand. I don’t like middle age because it used to be so much older.

Meghan: Exactly. What do we call it?

Zibby: Let’s give it a new name. Maybe you can do that from your platform.

Meghan: It’s middle of the stream. We need something evocative. All right, I’m going to work on that.

Zibby: In some ways, it’s really great. In some ways, you come into your own. I love this age. I really do. It’s just, middle is such a — you work on that. I’ll work on it too.

Meghan: I would love to hear more. I think that’s right. I was at the PEN World Voices Festival. There was a big party. I was like, oh, right, I’m at the age where I can go to the party if I want to and not go to the party if I want to. When you’re young, you feel like you have to go to the party. There’s this way in which you can really make decisions for yourself. They feel much more your own. Yet there’s the challenge of, what does this all mean? Where am I? Where am I on time?

Zibby: Or I can leave the party at 9:45 because I can’t stay awake past ten o’clock anymore.

Meghan: Exactly. I went. I stayed for the exact amount of time I wanted to stay. Then I left. It was so liberating.

Zibby: There was some benefit I went to that ended right at nine. I was like, this is genius. Why doesn’t everybody do this?

Meghan: Look, six until eight PM, even.

Zibby: Yeah, great. I know. I would so much rather have a breakfast party. I start high. The rest of the day, I just lose my — that’s not midlife, I guess. That’s just me. Maybe exacerbated by that.

Meghan: Children too. As working parents, at the end of the day, you’re like, this is my time. You’re going to bed. Now it’s my time.

Zibby: With the success of your books and everything, has there been anything that has come of it in terms of people that you’ve met or something just totally unexpected that has come even from this latest book, stories you weren’t expecting? Has there been a trend that you didn’t see coming after this has come out?

Meghan: I have to say, on the most basic level, this book was really hard to write. One reason it was hard to write is it’s hard to tell the story of your own illness. It’s a little bit like telling people your dreams. You kind of had to be there. From a craft perspective, I was really worried that — my illness was largely invisible. It was full of ups and down. It wasn’t dramatic in a certain way. This fundamental question that I had was, would anyone connect to this book? Was it actually going to be evocative of other people’s stories? I do think the biggest, not necessarily surprise, but reality that I was not sure about was that people are connecting to this book. They feel seen and heard in a way. That’s what I hear a lot, which is really touching. They felt more seen and heard by the book than they had by anything they’d read, which was my greatest hope for it. It’s a really good question. I think I am shocked by how many people are suffering and how hard it is for us to tell our stories. That’s not a fun fact, but it has been galvanizing. I do feel that people around people who are sick or suffer from pain are starting to listen with new ears. We are on the verge of a national shift of some kind. More locally, there have been some writers I met. The writer Chloé Cooper Jones has a beautiful book out called Easy Beauty. We’ve been on a parallel tour.

Zibby: Yes, I have her coming up.

Meghan: She’s awesome. She’s so wonderful. I feel like I have a new friend. That’s been one of the great gifts of tour, and just meeting and hearing from readers. I love getting emails from readers.

Zibby: I want to have, perhaps, a daytime party since we’ve already established too late at night is not good. I want everybody just to wear shirts and have all these boxes. Chronic pain, check. Grieving a loved one, check. All these ways. When you look at people on the street, you just have no idea. I feel like everyone would be such a better person and we would all be so much kinder to each other if all that stuff was on the outside versus hidden on the inside.

Meghan: I remember so vividly when I wrote The Long Goodbye — I think I wrote about this in The Long Goodbye, which was about my mother’s death. It was written kind of in real time because I had this feeling that — I was so inconsolable. Very few of my friends — I was thirty-two. Few of my friends had lost somebody. They didn’t know what to say. I felt like, again, something was wrong with me. This grief is so big. I had this naïve idea that every day, the grief would be half as much as the day before. It would just kind of go from big to small and be done. I wrote the book in real time to show that grief was much messier. One day a couple weeks after my mom died, I remember getting on the subway. Someone shoved me. Another person was rude. What’s wrong with you? I felt like bursting into tears. I remember just wishing exactly what you said. Could we have a way of showing when we’re vulnerable? Ever since then, I’ve felt very different in public. When someone’s really short or strange to me, I just think, maybe they just lost somebody. Maybe they’re sick. It’s really hard. I love your idea.

Zibby: It’s like it used to be in the olden days when people would literally enshroud themselves in black. You would treat them with respect.

Meghan: Special care and special gloves.

Zibby: As opposed to, maybe I’ll wear a black T-shirt and jump back on the subway or something. Anyway, I’m sorry, we’ve gone a little late. It’s been really great talking to you. I really would love to meet you in person. That would be really fun. I want to send you my book. I feel like we have a lot in common.

Meghan: I think I have your assistant’s email, so why don’t I give her my — she can give you my email.

Zibby: Oh, good. Perfect.

Meghan: Send me your book. Let’s definitely get together. I’m sure we actually know a bunch of people from Yale in common too.

Zibby: I bet. I didn’t realize we were there at the same time.

Meghan: I was probably a year or two in front of you.

Zibby: I was ’98.

Meghan: ’97.

Zibby: It was so great to connect.

Meghan: So good to connect. Thanks for having me, Zibby.

Zibby: Of course. My pleasure. Buh-bye.

THE INVISIBLE KINGDOM by Meghan O’Rourke

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