How long COVID sheds light on other mysterious (and lonely) chronic illnesses

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. The number of new COVID cases is in steep decline in many parts of the country. But we don't yet know how many of the people who've had COVID will develop long COVID, with chronic symptoms that may include fatigue, shortness of breath, coughing, joint pain, muscle pain, chest pain and problems with focus and memory. The attention researchers are devoting to long COVID may end up benefiting people with mysterious, hard-to-diagnose diseases, including Lyme disease, and autoimmune diseases like chronic fatigue, syndrome and fibromyalgia. Patients with these diseases have often been told it's all in their heads.

My guest Meghan O'Rourke has been writing about long COVID for The Atlantic and Scientific American. Her new book is about her own experiences with chronic illness. It started in the late 1990s, soon after graduating college. Her symptoms over the years have included extreme fatigue, brain fog, joint pain, nerve pain that felt like constant electric shocks, hives, fevers and more. She's been diagnosed with Lyme disease and several autoimmune diseases and tried many different approaches to treating them. Her new book, "The Invisible Kingdom: Reimagining Chronic Illness," is also a diagnosis of our medical system and how ill-equipped it is to deal with patients who are suffering with illnesses for which we may not even have names yet, let alone treatments. O'Rourke is a former fiction/nonfiction editor at The New Yorker, former culture and literary editor at Slate and is now the editor of The Yale Review.

Megan O'Rourke, welcome to FRESH AIR. COVID has been triggering epic rates of long COVID, whose symptoms are very similar to autoimmune diseases. And long COVID seems to be related to immune dysregulation. Can you compare long COVID with the autoimmune diseases that you write about in your book that you've experienced? What do they have in common?

MEGHAN O'ROURKE: Absolutely. So long COVID is characterized by a wide variety of symptoms that persist long after the initial infection with the SARS-CoV-2 virus. And those symptoms, you know, might include chest pain. But they also include so-called vague and subjective symptoms, like brain fog or fatigue and roaming pain in the body. For some patients, these symptoms come and go a little bit. They are also hard to measure on certain kinds of conventional lab tests. And all of this puts pressure on patients who then have to testify to the reality of their own illness.

In this way, it's quite similar to many of the autoimmune diseases and the other diseases I write about in my book because these are diseases that we lack really good tools for measuring, especially in early states of the disease. They're diseases that can come and go. They're diseases that can be affected and worsened by stress. And they're diseases, therefore, that are often contested by medicine.

You know, we can get into it further, but we - there's a lot we still don't know about what exactly long COVID is. And a lot of the researchers I've reported on have said to me the term itself may be an umbrella term in the end that encompasses a few different kinds of conditions that we come to understand better. And, in fact, one of those conditions may be autoimmune disease, right? We do have evidence that long COVID seems to be triggering pretty substantial rates of autoimmune disease in some patients who get COVID.

GROSS: Because of long COVID, I think it's fair to say, researchers are putting more time and energy and resources behind understanding these mysterious illnesses because so many people have long COVID. So what is the latest researchers have discovered about possible causes of long COVID that might have impact on other chronic diseases?

O'ROURKE: There's a number of governing theories about what long COVID is, and they range from - you know, when we got sick, our immune system springs into action - right? - trying to get rid of the pathogens that have, you know, entered or even invaded, we might say, our body and tries to push them out. And so one theory of long COVID has been that in some people, that immune response just doesn't turn off for, you know, a wide variety of reasons. And so they keep getting damage to their body done by their own immune system, either an autoimmune process or inflammation. Just - we've all heard that term, right?

There's also some evidence suggesting that in some parts of the body, fragments of the virus remain, or in other parts that the virus itself remains persisting and triggering ongoing immune action. A recent study found that there are some indicators that can tell us a little bit about who might be prone to get long COVID. One such indicator is the level of coronavirus RNA in your blood early on in the infection. So that tells us something about that term viral load we've all heard about. So if you have a high viral load early in your infection, even if your symptoms are mild, you might end up with long COVID.

There's also evidence that some of these things called autoantibodies, which are the antibodies in autoimmune disease - these are antibodies that instead of attacking those pathogens that are coming into your body, actually end up mistakenly, mysteriously attacking your own tissue instead. Another factor is people who have reactivated Epstein-Barr virus, which many of us have had. But some of us have these episodes of reactivation. That can be kind of a sign that you might develop long COVID. And another is the presence of Type 2 diabetes.

GROSS: Have you been reporting on long COVID because you know it's related to the problems that you and so many other people have had with chronic, often autoimmune diseases?

O'ROURKE: Absolutely. So, Terry, when the coronavirus pandemic came to the U.S., kind of the first big wave in March - it was in the U.S. before - but during that first wave, what kept me up at night as the coronavirus pandemic came to the United States was not just the wave of acute infections that were clearly coming but also the prospect of a tremendous wave of chronic illness that would follow them. The research I had been doing already for five years had taught me that in many cases, infections can leave ongoing problems in a subset of patients in ways that we're just beginning in medical science to really research and understand. Many autoimmune diseases are triggered by viruses, in fact. It's the interaction of a virus or an infection with your own genetics can in some cases trigger conditions like lupus or multiple sclerosis, as we just found out in a big study.

So I had been talking to virologists who - and researchers - who work on the ways that Epstein-Barr creates all kinds of, you know, long conditions. And, you know, reading these early reports of the severity of the SARS-CoV-2 virus just had me worrying that a tremendous number of people were going to get sick and never get better. So I was kind of lurking on message boards and reading around from pretty much April of 2020 to see what I was seeing and pretty quickly just started seeing these terrifying messages that reminded me so much of my own case, where people were saying, I just never got better. I got sick. I have brain fog. My energy is gone. I'm not the person I once was. And I read those with a chill of recognition.

GROSS: You write, you know, the stories we tell about illness usually have startling beginnings, like the fall at the supermarket, the lump discovered in the abdomen. But yours doesn't have one story like that. You have several ways of telling how your problems started. Would you describe a couple of those ways over the years?

O'ROURKE: Yeah. So my illness is hard to put a starting point to. There's a version in which I can say I had strange symptoms from when I was a young child. But one of the ways I can talk about it is that in the fall of 1997, not long after I had graduated from college, I was walking to work from my, you know, East Village apartment, you know, excited for my new life as a person in the city. And as I was walking down East Ninth Street toward First Avenue, these terrible electric shocks came over my body. It was like someone was sticking tiny needles all over my legs and arms. And the sensation was so severe that if I didn't rub my legs, they would start spasming. And I had to stop and lean against a parking meter and just wait until this episode had passed, some 15 minutes later.

From then on, I started getting these electric shocks daily and having strange bouts of vertigo and fatigue and dizziness, and I never really got better. I sort of went up and down for years, and I had a roller coaster of different problems - abdominal pain, dizziness and fainting, joint pain, memory loss, incredible fatigue, hives, and then these very strange drenching night sweats that started after - not long after 9/11. Any time I went to a doctor, they would say, look. Your labs look great. You're this relatively healthy young woman. Maybe you're just a little bit stressed. You have a really stressful job.

And I kind of didn't ask too many more questions until I was in my 30s. And one day, I was driving a colleague home from a Christmas party at Princeton, where we were then teaching. And this was someone I had known, you know, in New York for 15 years. We were colleagues. And it was really strange. We were driving past an exit, and I looked over at him. And all of a sudden, I had no idea who he was. And I did know that I knew him, but I could not have told you his name. I could not have told you even in what capacity I knew him or how long or how I had met him.

And so I kind of, rattled, drove all the way home - and actually remembered who he was at one point - walked up the stairs to my apartment after parking, and spoke to my partner. And I said, look. This just happened. Has something like this ever happened to you? And that was the moment where his face really got alarmed. And he said, no, I think, you know, something really is wrong. And that was the moment, I think, when I just really started to realize that I needed answers no matter what.

GROSS: What kind of doc do you go to when so many parts of your body are affected? You can go to your internist. It's hard to figure out what specialist to go to because, is it a nerve specialist? Is it a joint specialist? Is it, you know, a memory - like, who do you - what were some of the dilemmas you faced about even figuring out where to seek help?

O'ROURKE: I was so naive, Terry. I didn't know, really, that you needed to even go to specialists. Like, I just didn't - I was young. I just really didn't understand very much. And so it took a long time to figure out that I should keep asking questions and ask to be referred to specialists. And when I did finally figure that out, I started to cease - just ask around - right? - and then, in the way one does, someone recommends somebody, you go see them.

I ended up seeing a really tremendous doctor who specializes in women's health who was the first to take my history and listen to me and say, I think you really do have an autoimmune disease. But by the time she diagnosed me, there were so many things going wrong in my body that I ended up seeing, I think, nine different specialists, all to sort of attack different problems I was having, right? - a neurologist, a dermatologist, an immunologist. And, you know, none of these doctors were really speaking to each other or communicating, and they really were just looking at the piece that fell under their jurisdiction. So there was no one stepping back and taking a look at my health as a whole and saying, what's wrong with this person? She has so many seemingly different symptoms. Is there a way in which they might be connected?

GROSS: So when you go to a dermatologist and complain about your hives, would you tell them about the brain fog and other issues that you were having, or did they just - did you withhold that information, or were they just dismissive and said, you know, like, that's not my field; I can't help you with that?

O'ROURKE: (Laughter) I think in a lot of cases, I didn't tell them just because it didn't come up, right? The basic building block of modern medicine in America are these 15-minute doctor's appointments, right? And so you go in, and the person asks you a few questions, and it just didn't even maybe come up that all this other stuff was going on. Why would I tell my dermatologist I had night sweats?

Over time, as I got sicker and more practiced and more assertive about my need for answers, I would sometimes tell the doctor, look. Here's this full array of problems that I'm having. And I just remember vividly watching one doctor's face change - right? - as my list of symptoms got longer. And I just felt him back away. This was a doctor I didn't know very well that I'd been referred to. I just saw him think, oh, this is a problem patient - a so-called problem patient, right? This is a person who is invested in being sick. I could just feel his thoughts across the room.

And after that, I have to tell you, I really did start picking and choosing what I told doctors because I really wanted to get them on my side. I really wanted them to be invested in helping me. And I had come to think that if I told them the full extent of what was going on with me, they might think I was a hypochondriac.

GROSS: Let's take a short break, and then we'll be right back and talk some more. My guest is Meghan O'Rourke, author of the new book "Invisible Kingdom: Reimagining Chronic Illness." We'll be right back after a short break. This is FRESH AIR.

(SOUNDBITE OF STEFANO BOLLANI'S "ALOBAR E KUDRA")

GROSS: This is FRESH AIR. Let's get back to my interview with Meghan O'Rourke. Her new book, "Invisible Kingdom: Reimagining Chronic Illness," is about living with chronic illnesses that took years to be diagnosed, including chronic Lyme disease, Epstein-Barr and endometriosis. The book is also about what scientists are learning about autoimmune diseases and why our system of medical specialists is not designed to deal with illnesses that affect multiple parts of the body in mysterious ways.

So you were saying that you knew that some doctors were thinking of you as a problem patient, a - you know, a patient who is invested in being sick. How did that make you feel?

O'ROURKE: It was the hardest part of being sick. I felt incredibly lonely. And what was challenging about it was that living with illness is hard enough, right? I was dealing with pain. I was dealing with the inability to do the work that I loved, which was writing and reading - was really, really hard for me at that stage. But the hardest part of being ill was that I didn't feel I had any advocate on my side who even believed fully in the reality of what I was describing to them.

And it meant that I felt that, you know, in a sense, kind of locked away in a room like a 19th-century hysteric, right? I didn't - I couldn't figure out how to have doctors become my allies in the way that they were supposed to be. And I just couldn't get to the place where I felt that anyone was truly interested in my condition until - you know, at a certain point, I started to meet the doctors who kind of would become the detectives at my side. But there was a period of just extreme loneliness that brought about despair, right?

GROSS: And so you just compared your problems with how doctors diagnosed women with similar problems in the 19th century and called it hysteria, which was a psychological diagnosis. You know, like, you're imagining all of this. It's in your head. Women are prone to hysteria. That was the diagnosis in the 19th century. And you compare women with autoimmune disease to that diagnosis of hysteria in the 19th century. Can you talk about the similarities?

O'ROURKE: Yeah. So what's really interesting is that the original kind of epidemic of diagnosing hysteria in the 19th century - there's other prehistories that we can talk about, too - but that sort of 19th century image we have of the hysterical woman. At first, doctors really thought this was what they call an organic disease, which is to say a disease rooted in systems of the body's organs. A lot of women who ended up diagnosed with hysteria had abdominal pain, bouts of fatigue, symptoms that came and went.

So doctors originally were trying to kind of figure out what was wrong with these women, and they thought that it was a disorder of the nervous system, which was newly discovered and something there was a lot of excitement around. And when they couldn't find an answer in their tests, they then ended up abandoning that idea. And doctors start to increasingly talk about the ways that hysteria is caused by women's brains, that women are trying to use their brains too much. And so therefore, they're sick.

And the reason I compare autoimmune diseases and chronic fatigue syndrome or myalgic encephalomyelitis and chronic Lyme disease and fibromyalgia to hysteria and say these are today's hysteria is that it's very much the case in the research I did that you can see medicine is incredibly uncomfortable with areas of uncertainty, diseases it can't measure, diseases it doesn't have a really clear handle on. And so when women especially, but actually anyone who has one of these diseases, goes into a doctor's office and says, doctor, you know, I'm experiencing fatigue, I'm experiencing brain fog, it comes and goes, you very quickly get to the question of whether you're anxious when lab tests don't show really clear-cut answers.

So there's this really fascinating phenomenon in current medical science in which patients who live at the edge of medical knowledge - right? - patients whose diseases we have a tough time measuring or we just don't understand yet - we don't know how to differentiate properly - rather than being told, hey; you're probably someone who has something I don't understand, such patients are often told, I think you should see a psychiatrist. I think you are suffering from anxiety. Maybe you have depression, right?

And I want to be really clear, you know, advances in how we treat mental illness are one of the great triumphs of 20th-century medicine, and it's really important to talk about mental health and chronic illness. But the problem I kept seeing patients talk to me about was that - and what happened to me - is that doctors often go to the kind of suspicion of anxiety in a way that forecloses further investigation into what might be going on.

GROSS: So you went to one doctor who said, your symptoms are very real, but that doesn't mean we know how to cure you. And that was so helpful to you. Why did you find that so useful even though she didn't have a solution?

O'ROURKE: Yeah, this was my neurologist. She just was incredibly kind. She's very smart. She looked at me and said, I completely believe something is going on with you. We just don't know what it is, and we may not be able to help you. And the recognition of that changed everything for me because it went - I went from trying to get someone else to believe in what I was saying to feeling that I had an ally who did believe me. And that brought hope with it, and I think it brought the comforts of being seen.

GROSS: Let's take another break here, and then we'll talk some more. If you're just joining us, my guest is Meghan O'Rourke, author of the new book "Invisible Kingdom: Reimagining Chronic Illness." We'll be back after a short break. I am Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF BRAD MEHLDAU'S "THE FALCON WILL FLY AGAIN")

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Meghan O'Rourke. Her new book, "Invisible Kingdom: Reimagining Chronic Illness," is about living with chronic illnesses that took years to be diagnosed, including chronic Lyme disease, Epstein-Barr and endometriosis. The book is also about what scientists are learning about autoimmune diseases and why our system of medical specialists is not designed to deal with illnesses that affect multiple parts of the body in mysterious ways. O'Rourke is a former editor at The New Yorker and Slate and is now editor of the Yale Review. She's been reporting on long COVID in publications like The Atlantic and Scientific American.

So tell us what diseases you've been diagnosed with and the ones that turned out to be real.

O'ROURKE: Over time, I was eventually diagnosed with something called autoimmune thyroiditis, which is thyroid disease that's caused by autoimmune processes in your body, with your body attacking your thyroid. I was diagnosed with Lyme disease that had gone missed for probably 15 years. And I was ultimately also diagnosed with a genetic condition called Ehlers-Danlos syndrome, which is a group of connective tissue disorders. You know, we all think of collagen as - we know collagen from skin care products - right? - and sort of flexible skin. Well, in Ehlers-Danlos syndrome, your collagen is too fragile, so it tears really easily. And your veins Don't constrict properly. And so as a result, I also have dysautonomia, which is a autonomic nervous system disorder that causes, in my case, fainting and dizziness and can contribute to brain fog.

GROSS: Are these all connected? Are these all sourced to a similar problem? Or do you just happen to be vulnerable to multiple diseases?

O'ROURKE: It's a really good question. There's not a clear answer to that question, but a lot of researchers suspect that when you have some of these conditions, such as Ehlers-Danlos syndrome, or when you get Lyme disease, you are more susceptible to other conditions that come along with it. We do know that infections can trigger autoimmune disease. One of my doctors said, we don't know if you would have gotten autoimmune disease anyway or if the Lyme helped cause the autoimmune activity in your body. I also have some other sort of vague autoimmune stuff.

You know, there's this theory of a kind of overlapping set of conditions, where once you get one infection that dysregulates your immune system, then when the next infection comes along, it causes more dysregulation, right? And along the way, in addition to these diagnoses that I still live with, I had a lot of Epstein-Barr virus that kept getting reactivated, and other viruses. So clearly, you know, at the time, I thought, am I just incredibly unlucky? But what my research taught me is that - and the researchers I've worked with have told me, is that these conditions really do tend to cluster, right? And that's part of what leads to patients not being believed.

GROSS: So you know, when we talk about autoimmune diseases, the basic way of describing that is that your immune system attacks healthy tissues instead of attacking germs. What triggers that kind of response where your immune system attacks healthy tissues, leading to the kinds of disorders you've described?

O'ROURKE: Researchers are still trying to answer that question. But we have a host of possible answers. One thing we know is that infections can trigger that response in a subset of patients who are just genetically susceptible, right? You have a certain mutation. And the virus comes in. And then it can lead to or help contribute to autoimmune disease. One of the mysteries of autoimmune diseases is that they're rising at epidemic rates in Western countries.

So one of the things that researchers suspect is that something in our environment is changing our immune systems. That could be anything from the vast new number of chemicals to changes in our food system and how we eat, and how that impacts our microbiome. It could involve a whole host of things, but things like changes in your microbiome - stress is a major cause. We have studies that suggest having what's called an adverse childhood event, a significant childhood trauma, can increase your risk of autoimmune disease later in life. So you know, there's a lot of mystery still here. But what's really clear is that something in the environment is changing and contributing to it.

GROSS: You tried a lot of different treatments over the years. What were some of the more extreme or dubious ones that you tried because you felt so desperate and nothing was working?

O'ROURKE: Yeah. So in the book, I try to chronicle my quest and other patients' quest as a way of showing how and why patients do things that they might not do in other circumstances. So in the book, I talk about, you know, seeing many integrative doctors who really helped me, and then some doctors and practitioners who I might, you know, not see today - one of whom gave me colloidal silver extract and had me take it, another of whom did a procedure where he extracted some of my blood and put ultraviolet light in it and put it back in my body - right? - which some patients swear by.

But I really didn't trust this guy. And I just wanted to walk out of there. And I didn't because I was so desperate - right? - at the time. A very, you know, maybe seemingly strange treatment I did, but one that has a lot of solid medical evidence behind it, was what's called a fecal microbiota transplant (laughter), which I don't know if I want to go into too much here. But it involves transplanting, you know, fecal microbiome from one person into another.

GROSS: Yeah. So the microbiome is the collection of microbes, bacteria, in your digestive system that might contribute to good health or poor health, depending on what those microbes are. And the idea behind a fecal transplant is that you take, basically, the feces of someone with a healthy microbiome and transplant that through - what? - a syringe into the unhealthy person's microbiome. And you flew to England to get that done. It's still a pretty experimental treatment. But I think it's gaining traction among medical professionals, right?

O'ROURKE: Yeah. Absolutely. So it's been accepted for the treatment of C. difficile infections, which are really intractable infections that hospitalized patients often get after antibiotics. And it is being used in the U.S. for that. But in my case, where I had taken a lot of antibiotics for - to treat Lyme disease, and I had in my 10 years of research learned that antibiotics can really contribute to autoimmune disease, I wanted to try to restore my microbiome or just get back to some fundamental health. And I decided to try this treatment, which I could get in England, but not in the U.S.

Yeah. And you've summarized it beautifully. It's basically that you're taking other people's microbiomes and trying to transplant some of it into you with the idea that those bacteria will colonize your own gut, right? And kind of get back to work. And the reason this is important is that one of the really startling things I learned in my research was how influential the microbiome is to our health in ways that, again, we're still just learning about.

But one researcher put it to me this way in a way I can't forget. He said, you know what, if our immune system is partially a system by which we interact with our microbiome, right? And what if the microbiome are kind of in conversation with our immune system? There's evidence to show that that's true, that the bacteria we have actually influence our immune system and also our genetic expression, epigenetics. So it just - the evidence all lined up for me in a way where I thought, this is something really worth doing. And it's been fascinating to read and report more on just how influential the microbiome is.

GROSS: So did it help you?

O'ROURKE: Oh, absolutely. I mean, after the treatment, about - they say it takes about three weeks to kind of settle in because it's almost like an organ transplant, right? I had an immune reaction. I felt really sick. And then about three weeks later, I felt better than I had ever felt. I started running, like, half marathons again. And I just, you know, had this kind of abundance of energy. And I got pregnant, which I been trying to do for years. So, you know, take that as it will - anecdotal data. But it certainly helped in my case.

GROSS: How long did it last?

O'ROURKE: It lasted - it seemed to last through my pregnancy. And then I got quite sick again when my son was 8 months old and took antibiotics again, and that definitely impacted my microbiome.

GROSS: So what did you do about it?

O'ROURKE: You know, I've been eating a lot of yogurt and kimchi because you want to eat a lot of fermented foods to support your microbiome. So I haven't done anything. You know, the pandemic started not too long after that. But I have thought about going - I mean, I'd like to go back to England and do this transplant again. It's something I really did put personal stock in that it kind of worked for me. Yeah.

GROSS: Well, let's take another break here, and then we'll talk some more. If you're just joining us, my guest is Meghan O'Rourke. She's the author of the new book "Invisible Kingdom: Reimagining Chronic Illness." We'll be right back. This is FRESH AIR.

(SOUNDBITE OF GAIA WILMER OCTET'S "MIGRATIONS")

GROSS: This is FRESH AIR. Let's get back to my interview with Meghan O'Rourke. Her new book, "Invisible Kingdom: Reimagining Chronic Illness," is about living with chronic illnesses that took years to be diagnosed, including Lyme disease, Epstein-Barr and endometriosis. The book is also about what scientists are learning about autoimmune diseases and long COVID and why our system of medical specialists is not designed to deal with illnesses that might affect multiple parts of the body in mysterious ways.

You had seen so many specialists over the years. You also saw integrative medicine doctors. And integrative medicine is medicine that looks at the patient as a whole, not just as, like, one organ or one body part, and that also tries to integrate traditional medicine - the kind of medicine that most doctors practice - with alternative medicines, like acupuncture, for instance. Did you find integrative medicine a helpful approach to understanding what was going on in your body?

O'ROURKE: I found it a tremendously helpful approach. I did a lot of work to find integrative doctors that I deeply trusted. And the reason I found it so helpful was that they take a whole-body approach, right? They are medically trained doctors, so they're looking at your labs, and they're prescribing medication when appropriate. But they were also talking to me about things like my sleeping habits, the level of stress in my life and food and food sensitivities and trying to really help me figure out what foods made me feel better and what foods made me feel worse, because a lot of the time when I ate, I just felt really sick afterwards. I got terrible headaches. So they worked with me very patiently to try to manage my illness.

And I think - you know, I spoke earlier about the loneliness I felt initially being sick. And I think working with integrative doctors helped me feel that I did have a partner in my health care. You know, I'm a very evidence-based person. So one always has questions about some of the aspects of medicine that are less well-studied, like supplements and all of that. But in my case, it just became really clear that what these doctors were doing with me, the kinds of lifestyle changes they were advocating made a big difference in my day-to-day functioning.

GROSS: The problem with evidence-based medicine is that when you have a condition that hasn't yet been named and there isn't yet a test for it, then it's hard to find the evidence. And if there's no evidence in evidence-based medicine, then does that mean you're not really sick? You know what I mean?

O'ROURKE: Oh, absolutely. I mean, you're saying something I said many times, which is, when you're at the edge of medical knowledge, the lack of evidence is treated as evidence that the problem is you and your mind - right? - not, maybe we don't have a test for this yet. So one practitioner I worked with talks about this as a kind of - you know, being overly beholden to evidence and thinking that evidence will always be there. But obviously, there's a lot we don't know yet about certain conditions.

One researcher, the father of autoimmune disease - his name is Noel Rose - before he died, I interviewed him. And he said, in some cases with autoimmune diseases, our tests only showed damage when the organ under attack is already 80% destroyed, which I found astonishing. And he said to me, look. At that point, the train is already off the tracks. So the question is, what do we do with these millions of people who have illnesses that we just don't know how to measure yet in a very measurement-oriented system?

GROSS: You changed your diet pretty radically. Give us a sense of some of the things when you were at your most diet-conscious, thinking that food was contributing to your bad health.

O'ROURKE: Yeah. So I could tell food was making me feel worse because I would get headaches after eating certain things. And so I went on what's called an elimination diet. And then I did what's called the autoimmune paleo diet, where you radically restrict a certain number of foods in the hopes of reducing inflammation in your body, that kind of heat and swollenness - right? - that can come with immune activity.

So (laughter) there was a point one summer when I first embarked on this where I was cooking everything. I was not eating dairy. I was not eating gluten, which I still can't eat. I was not eating eggs, which I still can't eat. I was basically eating vegetables and fruits and, you know, protein. And I would make my own almond milk so that it didn't have any additives in it. And I would stay up and kind of soak almonds and then peel the skins off the almonds and then grind them and then put it through a sieve and make the milk. And I just remember looking up at my partner, Jim, and this time, he had sort of poured a bowl of Frosted Flakes and, like, put sugar on top.

(LAUGHTER)

O'ROURKE: I'd eaten - had, like, three cookies - three donuts, rather, and a cup of coffee and, like, done the Times crossword puzzle. And I was still, like, laboriously pinching almond skins off and thinking, well, something is wrong here. But in my case, those dietary changes really helped a lot. The challenge was figuring out what were triggers for me - in my case, gluten. A lot of people with autoimmune disease just can't eat gluten. It turns out actually - probably have celiac disease. Other people in my family have it, which is an autoimmune reaction to gluten.

But I think another challenge is, once you've identified those triggers, not becoming anxious that food is going to make you sick, right? I think one thing I've seen in myself and other patients is that food is the one thing you can control when you're sick, right? So you can become overly focused on the idea that eating certain foods can make you feel sick. And that was something I had to sort of find the balance of. I remember finally just saying, OK, I'm going to eat some gluten-free pizza. It's fine. Yeah.

GROSS: Now that you know you have chronic illnesses, how are you dealing with the fact that you're not - in the foreseeable future unless science really changes, you're not going to get better? You'll have periods of feeling better, but then you'll have periods of feeling bad again 'cause you've gone many years with being sick and then nonsick and then sick and then not sick. And I don't know if you've given up hope that the not-sick parts are going to last very long. So how have you had to retune your personal narrative knowing that you have chronic illnesses?

O'ROURKE: I've had to accept uncertainty, right? I think like a lot of ambitious and young people, I thought I could control my own future (laughter). But, you know, as you get older, you learn that's not true no matter what, right? But I've had to really accept uncertainty. And I've had to get a kind of maturity that allowed me to say, I'm so sorry; I can't do that, to people. There's just times I can't do things that I would like to do. And it took years of being able to learn to say no. Again, it sounds really obvious, but I think this is part of the strangeness of living with a chronic illness - is that, you know, your desires can outpace your ability to do things.

So in my case, I have a pretty clear sense of what my capacities are and what my triggers are. But even so, I'll have flares where - you know, the nature of subjectivity is to mystify. So I'll give you an example. In November, I had a really bad flare. I was really sick, and I just thought - one of the symptoms of it was that I got very tired around 3 p.m., and I stopped being able to concentrate or read. And I just thought, oh, I'm 45. You know, maybe this is just what happens when you're 45 (laughter). And then, you know, a few weeks later, I got better, and I was, you know, able to read at all times of the day.

And I thought, oh, right (laughter). That's just the mystery of being chronically ill - is that you start to take a certain reality for everyone's reality. And then, you realize it's your reality, and it's your reality for a short time, hopefully, right? But I don't know what's coming. So that brings a lot of uncertainty with it.

GROSS: Let's take a short break, and then we'll be right back and talk some more. My guest is Meghan O'Rourke, author of the new book "Invisible Kingdom: Reimagining Chronic Illness." We'll be right back. This is FRESH AIR.

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GROSS: This is FRESH AIR. Let's get back to my interview with Meghan O'Rourke. Her new book, "Invisible Kingdom: Reimagining Chronic Illness," is about living with chronic illnesses that took years to be diagnosed, including chronic Lyme disease, Epstein-Barr and endometriosis. The book is also about what scientists are learning about autoimmune diseases and why our system of medical specialists is not designed to deal with illnesses that affect multiple parts of the body in mysterious ways.

How did you decide who to tell and who not to tell about how sick you were? For instance, you know - like, you've been an editor at The New Yorker. You were an editor for many years at Slate. These are high-powered positions. Did you tell the people at work what you were going through?

O'ROURKE: I really didn't. Again, I think for so long, I thought the problem was something with me. And I haven't used the word shame yet, but I definitely felt shame. I mean, there were - I felt some sense of failing. And even when I was really sick, it was probably a handful of people I talked to. And in fact, one thing many friends have said is, I just have no idea what you were going through. It just felt shameful to me, which I now have a different view of. But at the time, I was so in it. And because there was no name for it and also because I really needed, actually, that recognition, I was all the more scared to ask for it, I think.

So I was pretty private. And part of it was exactly what you say. Like, we live in this society where you're supposed to just get up after a fall, right? You're supposed to muscle through it. And I felt that what I was saying was the opposite, which was, stop. Look. I can't get - something's wrong. And I - yeah, I struggled with how to say that to anybody.

GROSS: You say if every age has its representative signature disease, chronic illness is ours. Why do you think that's true?

O'ROURKE: So I contend that this type of chronic illness - these mysterious, poorly understood diseases, such as chronic Lyme disease, myalgic encephalomyelitis, or chronic fatigue syndrome, long COVID autoimmune disease - are these signature conditions because of the ways in which we don't understand them well. And so they become conditions onto which we project a lot, right? They are conditions in which we find, I think, pointedly reflected back at us, habits of thought that reveal key cultural assumptions to us.

So one of the things I found in my reporting was that many people who lived with these illnesses, who lived with autoimmunity, thought that the problem was something in themselves was at war - right? - that they were living an inauthentic life. They hadn't lived the life they should lead. And in this way, they took their illness and they turned it into a metaphor for personal inauthenticity that only they could overcome - right? - which is a huge burden for an individual to live with.

And the point I wanted to make is that in telling this narrative in the ways that these diseases kind of allow both sick people and people who are healthy to see the problem as an individual problem allows us to look away from the social factors that are contributing to the rise of these diseases - so everything from food deserts to lack of chemical regulation to, you know, probably our chronically fast-paced lifestyles and lack of social safety nets for new mothers and all sorts of things, right? So I really just came to think that these diseases reveal something to us about our culture in a way that made them deeply representative of aspects of the time that we needed to look more deeply at.

GROSS: And you are a very educated person, a graduate of Yale who's worked for The New Yorker and Slate and now edit Yale Review. You had - you know, you're not wealthy by any means, but you had the money to pursue different specialists. And I'm sure you've thought a lot about people who don't have that kind of high-level education and don't have the money or the confidence or the time to seek the kind of medical attention that you were able to seek. And what happens to them?

O'ROURKE: One researcher said to me - I asked him this question. He was a high-level executive in health care, and he told me that those people fall through the cracks and they suffer alone, right? One of the things I tried to write about is the way that our lack of a social safety net and our history of systemic racism can actually make people sicker. And there's quite a lot of good evidence that suggests this, that the history of racism, socioeconomic challenges and disadvantages all contribute to structural insecurity. All can contribute to these conditions where your immune system is dysregulated.

And so while we're putting - you know, while conservatives tend to put the focus for health on individuals and lifestyle, it's really clear from, you know, research that, in fact, social structures are a major factor in all of this. And so I think we're witnessing a calamity that is one not of personal failure, but of societal failure and one that we really need to reckon with openly.

GROSS: Meghan O'Rourke, thank you so much for talking with us, and I wish you long periods of good health.

O'ROURKE: Thank you so much for having me. It's been a real pleasure.

GROSS: Meghan O'Rourke is the author of the new book "Invisible Kingdom: Reimagining Chronic Illness." Tomorrow on FRESH AIR, our guest will be Anne Applebaum, who has been writing about Russia and Ukraine for The Atlantic and is the author of "Twilight Of Democracy: The Seductive Lure Of Authoritarianism" and "Red Famine: Stalin's War On Ukraine." I hope you'll join us.

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GROSS: FRESH AIR'S executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham. Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Ann Marie Baldonado, Thea Chaloner, Seth Kelley and Kayla Lattimore. Our digital media producer is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross.

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