I’m Ezra Klein, and this is “The Ezra Klein Show.”
Hey, it’s Ezra. While I’m on paternity leave, we’ve got an all-star team of guest hosts. This week, my Times Opinion colleague, Ross Douthat, takes the helm for shows exploring chronic illness and the divisions within conservatism. I’ve known and admired Ross since I began in journalism, so I’m really looking forward to these. Enjoy.
In the spring of 2020, stories started popping up about young healthy adults who had apparently recovered from Covid-19 infections, but weeks or even months later, were still experiencing terrible debilitating symptoms — heart palpitations, crippling fatigue, extreme brain fog, shortness of breath — the list goes on. That condition has come to be known as long Covid.
But in many ways, it’s still shrouded in mystery. Physicians still don’t know exactly what triggers the condition or how best to treat it. Skeptics argue for psychological explanations or blame cultural hysteria. All the while, millions of Americans are suffering. And that dissonance raises all sorts of important questions about how our health care system and our society deal with chronic illness.
My guest today is uniquely suited to discuss these questions. Meghan O’Rourke is the editor of The Yale Review and an award-winning poet and journalist who has done excellent reporting on long Covid for The Atlantic. But the main reason I wanted to invite her on the show is that we have both suffered ourselves from mysterious chronic illnesses that somewhat resemble long Covid. And we’ve both written books about what we learned from the experience. My own, “The Deep Places,” is just out this week. Meghan’s, “The Invisible Kingdom: Reimagining Chronic Illness,” is due out in March of next year, and it’s terrific.
So this conversation will be scientific and personal for both of us. We’ll talk about chronic illness in its varied forms, from long-haul Covid to chronic fatigue syndrome to autoimmune conditions and Lyme disease and more. We’ll cover the debate about what causes these conditions, the conflicts over treatment, the battles between established medical knowledge and more experimental ideas, and the struggle to get the medical system to take patient experience seriously.
And then we’ll also talk about what it’s like to experience a chronic condition from the inside, over years in my case, and more than a decade in Meghan’s, and how all of these controversies play out when it’s your body that’s in pain. My conversation with Meghan after the break.
Meghan, thanks so much for being with me.
Thanks so much for having me, Ross.
So we’re going to have a conversation about chronic illness in general that I suspect will get progressively weirder as we go through it. But I want to start as close to normalcy as we can with the chronic illness debate of the moment, which is around what gets called long Covid. So can you just start by giving us an overview of what is long Covid and what do we actually know about it at the moment?
So there’s a lot we don’t know about it at the moment, right? So we can start with that uncertainty. But what we do know about it is that in the weeks after the first wave of the Covid epidemic hit New York City, a number of patients started reporting ongoing symptoms, some six weeks out from their initial infection. Of course, this was happening elsewhere, too, but startlingly, it happened in New York. New York was hit so hard. There were many patients. And what quickly became apparent to a group of physicians at the Mount Sinai Hospital there was that these patients had a set of overlapping symptoms that involved shortness of breath, heart palpitations, chest pain, fatigue, and brain fog. Since then, as we’ve all heard, basically, long Covid has become a bigger and bigger problem. It seems to affect up to 30 percent of patients who get infected with Covid.
Startlingly, even those who can have mild cases of what’s called acute Covid, which is just the period when you’re kind of actively infectious for one or two weeks in the beginning of it, even some of those patients with mild cases of Covid were ending up really, really sick in the weeks and months to come.
So it’s not just that patients can get these long-term symptoms when they have mild courses of the disease. It also seems like long Covid is concentrated in a population that we don’t think of as being at super high risk for acute illness and death.
Yes, the people who are showing up with long Covid tended to be young. They tended to be between the ages of 20 and 50, which, of course, was not an age group that doctors had thought were likely to suffer the worst effects of the disease. And again, often, they hadn’t been hospitalized, even. They hadn’t had the lung pneumonia that serious acute Covid is associated with. These weren’t the patients who had lung damage, heart damage that was easily measurable, that we had seen in some hospitalized patients.
Also, because they hadn’t been hospitalized, these weren’t patients who could be labeled with Post-Intensive Care Syndrome or PICS, which is a syndrome we do know about and we knew about before Covid, in which people who spend a lot of time in the intensive care unit can come out with the kind of long-term symptoms of fatigue and memory loss and other problems because, of course, they were so, so sick, and they were not mobile for a long time. So, yes, a mysterious group of patients here.
Right, there were those famous images early in the pandemic of people who essentially looked like their lungs were like ground glass. These are not patients who seem to have suffered obvious massive physical damage in the way that a lot of ICU patients have.
Exactly, so the first round of tests that they did on these patients where they looked at their lungs to see if they had ground glass and that was causing shortness of breath, or they looked at their hearts, weren’t showing up anything. So one of the physicians I talked to when I reported on long Covid said to me everything was coming back negative. And so, as a result, western medicine wants to say you’re fine.
But a point she made was that there were further tests that weren’t being done where you could start to find problems with these patients. But initially, no one was doing those tests. So here’s this mysterious group. They’re young. They get a mild case of Covid, and suddenly, they’re saying, I can’t walk down the block. I can’t walk up a set of stairs, which is an extreme manifestation of some kind of illness. If you can’t walk up a set of stairs and you’re carting your toddlers all around New York City, and then suddenly, you can’t walk down the block with your stroller, that’s a big change.
Right, and so we’ll come back to the testing and diagnostic questions in a minute. But let’s just ground this for a minute in a personal story. When you wrote about this for The Atlantic, you had a number of patients you talked about, but one in particular whose name was Caitlin Barber. Can you just talk about sort of her experience as an illustration of what long Covid looks like in an individual life?
Absolutely. Caitlin’s story is a really dramatic one. So Caitlin was 28 — she might have been 27 when she contracted Covid. But she was newly married. She lived in upstate New York. She ran half marathons competitively.
When I first interviewed her, she spoke vividly about how she used to structure her workday. She would get up early, go to work. She was a registered dietitian working at a nursing home. Then she would go to the gym for two hours, work out really hard, then go home, make dinner for her husband, go to bed. Her whole life was structured around her work and then this really intense training regimen that she was on.
So she felt she had a kind of perfect life. She was looking forward to having children. She got a mild case of Covid. It wasn’t bad. She told me it was kind of like a cold. Two weeks later, she went back to work. That’s what we all thought. It’s two weeks, you get better, you go back to work. And then she told me, within three days, her world had crashed. The most notable symptom at the time was that she suffered profound brain fog. Now what does that really mean? If you haven’t experienced it, I think it’s hard to convey what brain fog is. But as she explained it, she was doing a feeding tube procedure, which was dietitian 101 for her, something she’d done rotely many, many times. And she’s holding the tube, and she looks at it, and she doesn’t know what to do next. And she had to call her supervisor to take over.
So she kind of enters this period where she’s going back and forth, trying to go back to work, but just finding that cognitively, she couldn’t remember the steps that she was supposed to take to do her job. She couldn’t remember things. She also found that any small noise or surprise would set her heart really racing.
And soon after trying to push through this for some time, she found herself unable to stand up without her heart racing to something like 180 beats per minute, where a typical rate is 60 to 100. If she tried to stand up, tried to push through it, she would actually go into convulsions and have to go to the ER.
So her life went from active, athletic, hopeful, to pretty much bedbound and really, really at a loss as to what was going on and what her future held and who could help her, within a few months.
So what did she do, besides suffer, right?
She suffered and I think she started reading online, right, which is something I’m sure we’ll talk about later. But when you’re in this day and age in the 21st century, when you’re a patient and no one is helping you, and no one is actually acknowledging that what you have is real — in fact, at the ER, a physician said to her husband, I can tell your wife is very, very sick, but her labs look perfect. Everything has come back perfect. And I can’t admit her.
So she starts reading around, and she learns about this center at Mount Sinai, the Center for Post-Covid Care. And she gets herself on a waiting list, and she gets there. And this is one of the first centers that started treating long Covid and really trying to codify long Covid. What is it? How does it work? What are the manifestations we’re seeing? Are there separate pathways to long Covid? Is this group of patients we’re seeing, are they all getting to the same set of symptoms with the same cause? So these were questions that they were trying to answer, but they were clinical. They’re practicing. They’re actually trying to help patients. So, with very little research to support them, they start trying to help support these patients in the whole body. And Caitlin gets there at a time when they’ve already managed to figure out some of what’s going on with long Covid. And they start helping her through PT and therapy.
And one of the key things that Mount Sinai figured out was that a lot of patients who were having ongoing symptoms, these particular subset of symptoms where you have a racing heart, shortness of breath, brain fog, and fatigue, had evidence of something that looks a lot like a condition called POTS for short, or Postural Orthostatic Tachycardia Syndrome, which is a disorder of the autonomic nervous system that we’re learning more and more about even before Covid.
Now these patients don’t look like classic POTS patients, but some of them have something that physicians start referring to informally as Covid POTS. So some of them have that. They also find that some of these patients, many of these patients, when they try to exert themselves, just like Caitlin had, they get much worse.
So the kind of common refrain that you hear from doctors of kind of gently trying to rehab yourself and get up, take a walk, go back, push through it a little bit, we have this — it’s not just American medicine that has that model, but we really have that as Americans, right? We should get back to work. We should push through this.
It’s our culture.
It’s our culture. It’s our lifeblood, that this very phenomenon, which has, in other circumstances, many good things about it, was actually making these patients much, much worse. And that’s precisely what had happened to Caitlin. She got much worse by trying to return to work. And Caitlin was not alone. I talked to many patients who had similar experiences.
So what did the Mount Sinai team try to do instead?
They basically found themselves in the position of having to be experimenters. But scientists like to experiment with some data to go on. And one thing they noticed early on — there’s a cardiologist at Mount Sinai named Amy Kontorovich. And she, along with David Putrino, noticed that these patients really did look like POTS patients. And they knew that in POTS, you have to retrain the autonomic nervous system according to a very gentle kind of rehab that does not trigger that overreaction of the nervous system that makes all the symptoms worse.
And one of the ways to do this is to rehab your system while lying down or on a recumbent bike. And the reason for that is that your heart isn’t working as hard as it would have to work if you’re, say, taking a one-mile walk for the first time, right? So they start to rehab patients using these kinds of POTS techniques, and they find that the patients start getting a little bit better.
They also realized that even in patients who had very mild cases, their breathing had changed. Something had happened to their lungs where they weren’t breathing deeply anymore. They didn’t know that they had this lung problem. They hadn’t experienced breathing issues in the same way that patients who had been hospitalized had. But they nonetheless were just taking shallower breaths.
And why does this matter? Well, it matters because the body really is an ecosystem. And your breath actually stimulates your vagus nerve, which is part of your autonomic nervous system, which in turn kind of helps reduce fight or flight responses. So their bodies were in this kind of state of alarm and also just not getting enough of the balance of oxygen and carbon dioxide in particular into their systems that they needed.
The assumption in this theory, then, is that the infection essentially stimulates this persistent response from the body that continues even after the infection is gone.
Yes, you’re right, Ross. Although in ways that you’ll be sympathetic to, I would say that these doctors wouldn’t even have necessarily said after the infection was gone. They were looking at all explanations for that ongoing set of problems. And at that time, when I was reporting on this story, they had three possible theories. One is that, in fact, the virus persists in small reservoirs in the body, which we know can happen with Ebola virus, or that fragments of the virus persist and kind of trigger an immune response.
Another theory was that this virus, SARS-CoV-2, triggers almost unheard of amounts of autoimmune responses in the body, autoimmune antibodies they’re called, in which the body starts to essentially attack itself. Another theory was that the virus itself just triggered a massive immune response that, along the way, created huge amounts of what’s called inflammation, which is really what makes us feel sick a lot of the time when we’re sick. It’s your body’s immune system rushing to fight the pathogens invading and to destroy them. And along the way, it kind of creates damage to your tissues, right? It’s sort of, if you think of it as a war, right, as many people do, it’s just the collateral damage, right? Your body takes these hits, even as it manages to get rid of the virus. And so possibly, that was a cause, too, right? Maybe the virus had been in the vagus nerve. There’s evidence it went there. And then the vagus nerve got damaged. And then that triggered poor breathing.
So they really still don’t know, I would say, exactly what pathway to long Covid these patients had. But over the past two years, they’ve been studying and studying, and we certainly do know that there’s a lot of autoimmune activity triggered by Covid. We also know that there’s certainly some evidence of viral persistence, right? They’ve been doing studies where they see that when you study patients, that some of them are testing positive for Covid weeks after they’ve had it. So there’s some evidence that either fragments or actively replicating virus persists in their bodies.
Right, but then you also have patients who have symptoms that clearly would place them into the long Covid diagnostic bucket, but who didn’t test positive at the outset or didn’t get tested because it was obviously really hard to get a Covid test in the first few months of the outbreak, but later on, don’t test positive for antibodies six months or a year after the initial infection. There are studies of patients who report long Covid symptoms who find people in the studies who have the symptoms fall into these no initial positive test or no antibody test.
And that connects to what I think is the fourth commonplace explanation for long Covid to go with the explanations you’ve just offered, right, which is that it is, in some sense, actually, mental health related and some version of what is often called a psychosomatic or psychogenic illness, with the basic argument being that Covid-19 was for everyone a kind of psychologically traumatic experience. Everyone had less social connection, had more anxiety about the future, knew people who were getting sick, lived in fear of the illness.
And this created some kind of collective mental health crisis. And mental health problems manifest in all kinds of different ways. But for some of these people who are being diagnosed with long Covid, they actually never had it. And somehow they have acquired a psychosomatic illness that mimics it. So what do you think of that argument?
Yeah, so there’s a lot in there that I want to try to unpack. First, let’s acknowledge that because of the terrible lack of testing and the unpreparedness of the American government for the coronavirus, we have all these people who got sick with something in March or April of 2020. They weren’t able to get a test, and then they never get better. Let’s stipulate that in that cohort, sure, there are some people who didn’t maybe even have Covid.
That said, you have this enormous population of up to 30 percent of people all manifesting with a very similar set of symptoms, some of which clearly point to autonomic nervous system disorder or others of which point to ongoing inflammation.
There are biomarkers we can look at that show that these patients have very specific kinds of dysregulation of their immune system and ongoing activation of certain cells, sometimes elevated autoantibody levels. Again, those are the kind of autoimmune antibodies that should be fighting viruses. And pathogens instead start fighting your own body and attacking your own tissue. That’s what an autoimmune antibody is.
What you’re describing is kind of a deeper layer of testing than the kind of tests that you get if you go into an ER and they run a battery of blood work on you.
Exactly, so when researchers like those at Yale or those in San Francisco who are really looking at the biomarkers and trying to understand what’s happening to these patients. They are finding things, right? They’re finding very clear signs of dysregulation. What does it all add up to? They’re still trying to work on that and put it together. So I think that clearly, the experience of Covid was psychologically upsetting for many people. I don’t see that there’s a causation between that that we know of that shows that that triggered a psychosomatic illness.
The other thing that’s really important to say is that even if we’re seeing in this cohort people who didn’t actually have Covid, let’s say we’re looking at all the antibodies. First of all, we do know that antibodies wane, right? So it’s hard to use that as our marker. Second of all, even if some of those people didn’t have Covid, it doesn’t mean that this was all psychosomatic. Some of those people might have had incipient autoimmune diseases. And yes, they’re getting caught up and thinking of their symptoms as long Covid when perhaps they never had the virus. But it doesn’t mean they’re imagining it.
Now, is brain, mind, body all deeply connected in ways that hopefully we’ll talk about a little bit later? Yes. But could people who have long Covid also be suffering from depression? Absolutely. Many people with chronic illnesses also suffer from depression caused by their symptoms.
But one thing that’s really important to note, too, is that some of the researchers I spoke to were really frustrated by this particular line of thinking, partly because they were — and I’m thinking of David Putrino at Mount Sinai. He was really able to identify that the cohort of patients who had positive tests and the cohort of patients who didn’t, but were coming and saying, I think I had Covid, and these are my symptoms, really overlapped. Their symptoms really overlapped, their progression really overlapped. Some of their biomarkers overlapped. So, given that we didn’t have those tests, that’s pretty good data. People are really doing that work to try to figure out who their cohort is and who really has an overlapping condition or sets of conditions triggered by Covid. So it’s not like that work isn’t being done.
Well, and also, I mean, one key difference here, I think, between how long Covid has been sort of experienced by the medical system and how other illnesses have been experienced is that the traditional pattern is that chronic illness sort of creeps up on society. It may be linked to some kind of infection. There are theories that chronic fatigue syndrome can be linked to, for instance, Epstein-Barr, which lots and lots of people have. But there isn’t this sort of moment when, suddenly, tens of thousands of people who weren’t sick before are sick with something new in the span of three to six months.
And my impression is that that has made the medical system as a whole much more responsive to long Covid than it has been to other chronic illnesses. That you do have this argument that it’s fairly common that, well, this is probably at least partially psychosomatic, or it’s mass hysteria. But within the medical system, that idea is weaker than it’s been with other chronic illnesses, not least because so many doctors and nurses, because they were on the front lines of the epidemic, have also been the people who get long Covid.
There’s two differences here, right? One is that this is happening on such an enormous scale, as you said, it’s just harder to write off. The evidence is before people’s eyes. It’s in the hospitals. It’s in doctors’ rooms. Second is exactly as you say. So many doctors either got sick with Covid or knows someone who got sick with Covid.
And as one of the doctors at the Mount Sinai Center for Post-Covid Care told me, he said these are my colleagues. I’m going to believe them. And that did change my mind and open my mind to this. And they were able to report on and be detectives about their symptoms in a way that might have been harder for a person who didn’t have medical training.
Right, and that, of course, is an experience that both you and I have had ourselves, right? And so I mentioned this at the outset, but listeners should know that we are not unbiased discussants of this question of chronic illness. And you in particular have come to the subject out of not years, but decades of personal experience.
So let’s pivot to the personal for a minute and start getting our own biases in this conversation out in the open. And actually, we can talk a little bit about whether being a patient is a form of bias or whether it’s sort of a necessary aspect of understanding. But when did you get sick, Meghan O’Rourke?
Patient zero. I don’t know, and this is one of the things that makes it such a hard story to tell and so easy for me to imagine other people not believing it. I don’t exactly know. I had little things, kind of strange little things all my life. And in retrospect, I have been clearly diagnosed with some things that would explain that.
But what I can point to is that after I graduated from Yale in 1997, my family and I rented a house in Stony Creek, Connecticut for a week, not too far from Lyme, Connecticut, and had a graduation party, a week of rest and relaxation. And I just started feeling bad that summer. I got some kind of little flu, summer flu, and then, in the fall, started to have a very distinct set of neurological symptoms for the first time.
And those symptoms were strange electric shocks that would run up and down my body. It felt like someone was taking tiny needles and pricking me, not even tiny needles, and just pricking me all over my body, particularly my legs and my arms. It was so intense that if I didn’t rub my legs and my arms to sort of distract my nervous system from what was happening, they would start to twitch and even spasm.
I started experiencing intense vertigo. At the time I worked at The New Yorker magazine, and it had two floors that were connected by a set of stairs where it was just floating planks with no back. And I started to find it really hard to walk up and down those stairs. I would get intense vertigo and dizziness. Now, this was really odd to me because I had been a pretty intense gymnast most of my life and an athlete who was used to flipping around in the air and having good air sense, as we all heard that term from Simone Biles this summer.
So this was really noticeable to me. I thought something weird is going on. But I thought, ah, maybe this is just what happens when you get to your 20s. And I start having these strange bouts of fatigue, very intense fatigue, and brain fog, and it would come and go. And then I started having hives all over my body. And then I started having joint pain and very intense night sweats, and the list goes on.
And so what you’re describing is a multiyear period.
This is a multiyear period. It starts in the fall of 1997 when I was 21. And it goes on and off until I’m 32 with periods of relatively good health and then periods where I was pretty not well. But every doctor I saw said, oh, my God, your lab work is perfect. I ran half marathons. I really was able to keep functioning in the main, and nothing looked off, except, oh, here’s this autoimmune marker. Maybe you have lupus. We test for that. No, it goes away. So things would kind of show up and come and go, but they were very little signs. Like, I was really anemic sometimes, and yeah.
So what was it like to see doctors during this phase of your life?
In the early phase, truth be told, I just thought, oh, they’re right. I’m a hypochondriac. I’m just a little bit. This is how everyone feels, and I’m just, I’m a poet. I’m sensitive. I just take it in. I worked really hard, right? So there was that explanation. I work really, really hard.
You were under stress.
I’m stressed. I was under stress. I worked at The New Yorker. Then I was writing a weekly column at Slate and editing the culture section. I had a fast-paced, intense life. And so I thought, OK, maybe it’s normal that when I have to meet someone after work, I can barely keep my eyes open. But really, things came to a head when I was 32 and my mother died after a long, stressful period in which I was helping care for her. And I really hadn’t been sleeping.
And the day she died, I got a really bad virus and had to take antibiotics. And just, no one knew exactly what it was. And I just never quite got better. A few months later, I got diagnosed with Epstein-Barr virus. And from then on, I really went downhill. And in that period in my 30s where I was starting to feel that my life was, more or less, over, as I had known it— in fact, more over, not less over. But my life was pretty much over as I had known it.
And in that period, it was really heartbreaking to see doctors. And it was heartbreaking not because they dismissed me entirely. They were really nice. I had great doctors. But they just weren’t in a system that was set up to help them become the kind of detective that they were going to need to be to figure out what was wrong with me.
So, again and again, it was, well, you’re a little anemic. Maybe we should give you some iron. Then a really wonderful doctor realized. She’s like, I’m sure, listening to you, that you have some kind of autoimmune disease. I was diagnosed with autoimmune thyroiditis. I took thyroid medicine. And the idea was, OK, that’s why you’re tired. You’re going to get better. But I just didn’t get better. And in fact, the symptoms were getting worse, in particular, the cognitive symptoms and the brain fog and the neurological symptoms.
And so it was very puzzling and sad because I would say, well, but what about the fact that I’m shaking all the time? And she would say, well, let’s do some more tests, or I would go to a neurologist or I would go to a rheumatologist. But my symptoms were so strangely roaming across all systems of my body that it was really hard to find the one person who was going to listen. Almost no doctor ever got the full list of my symptoms because they’re all specialists.
Well, and also maybe you were a little reluctant to give them the full list because of how they would look at you?
Yeah, as I think I say in the book that I’ve just written, at some point, I realized that I was what this very famous paper coined the term for what doctors call “heartsink patients.” And they’re patients who go from doctor to doctor. Their medical records have a long list of their symptoms, and kind of won’t take no for an answer and insist something really is wrong with them. And that was me. And so very early, I realized, oh, I should not tell the doctor all my symptoms. I just shouldn’t. I should focus on the one that’s causing me the most suffering.
Right, there is incredible pressure — I have certainly found this— to be a reasonable patient.
Right, you want to present as a patient as a reasonable person because only by presenting as a reasonable person can you trust that a reasonable doctor will take you seriously.
So I want to focus on an aspect of this, which I think can get easily overlooked, which is that when we’re describing chronic illnesses, the language that we end up using can sometimes obscure or just seem to minimize the actual experience of the suffering itself. So when you talk about symptoms like fatigue or brain fog, what are we actually talking about? What does it actually feel like to experience one of these conditions day in and day out?
Well, I’m sure there’s many different manifestations. And so I can talk about mine, which is — and I think what we both had, Ross, were infections that also destroyed our immune systems or did things to our immune systems. So in my case, it’s almost beyond language. It was not like being tired. Fatigue was the only word I had. We don’t have a word in the English language for what I felt.
But what I felt was that the cells in my body were unable to perform the most basic of functions. That’s what it felt like. It felt like if I were trying to stand up out of bed, I was made of sand. And I was trying to hold all that sand together. And it was incredibly heavy. And there was pain that roamed all around my body. To be honest, pain was the least of it. Pain was something I could kind of focus on and manage.
The hardest part about it — and I ended up trying to write about this in my last book of poems because I do think in some way, we don’t have literal language for it, right? That we do need to find a kind of invented language for this experience. But for me, it was the brain fog, right? Which I think you hear if you’ve never suffered from it in an intense way, and you think, OK, we’ve all had those fuzzy days. You just kind of focus and carry on.
And I guess what I would encourage listeners who’ve never suffered from this kind of illness to imagine is maybe you’ve had a really bad hangover. Maybe you had a really strong reaction to your Covid vaccine shot. Maybe you had a flu once. Imagine the worst hour of that flu. Imagine that it goes on and on and on for weeks, and then months, and then years, and it never, ever goes away. And on top of that, you have all these other problems that no one can explain to you.
And so I think for me, I was suffering in that way, but no one was recognizing that suffering, with maybe one or two exceptions. So I also was wondering, am I losing my mind, right? Is something really wrong with me mentally? Have I completely lost my grasp on reality? And I would toggle between that question and then seeing a doctor who clearly was not taking in the import of what I was saying. And at this point, I was also doing a lot of research and reading and starting to educate myself on what might be going on in my body.
And having a reaction to them by thinking, I do know things about my experience that you don’t know. I am living at the edge of medical knowledge, I found myself thinking one day. And at that point, when I articulated that to myself, it just made it much clearer that I had to believe what was happening was real, and I had to try to find an answer. But I think another part of it that was hard — and I think you suffered from this, too, and you write about it really beautifully in your book — is that it kind of changed.
So it would be that one flulike feeling all the time, but then on top of it, I might have the electric shocks. Or on top of it, I might have horrific hip pain that made it hard to walk up and down stairs. Or my heart would start to race, or my blood pressure would drop really, really low so I was fainting repeatedly and got a concussion. So I think the not knowing was a really hard part of it, too, which is — I remember saying to my husband, I wish there was just a little panel like the one I have on my heating system at home that would just say, code 42 error, you know? And then you could look it up in the manual and figure out what’s wrong.
Right, or that you could just sort of expect the same pain, right? You get into this weird feeling where you’re envying people who have one single thing wrong. You’re like, OK, this person had to have their leg amputated, and that’s terrible. But at least they wake up every day and they know, OK, today I wake up, and I don’t have a leg. Whereas you woke up every day and were like, hmm, I wonder if my heart won’t work today. I wonder if there will be pins in my foot today.
Exactly. There’s a lot of really apt critique of our hyper diagnostic age, right, where you can get a diagnosis of everything from shyness to ice cream headache, as I think I say in my book, right? There’s a medical term for that. So there’s valid critiques to make of diagnosis, especially as the end point of a chronic illness story. As you and I both know, a diagnosis isn’t the end point when you’re dealing with a chronic illness. And so the chronicity itself is really, really hard to deal with.
But I did really believe and still think that diagnosis is important because it comes from the word to know, right? Knowledge. And it helps you know something about a disease. It’s not the end-all of your knowledge, but it’s a piece of knowledge. And it gives you a point of contact to explain to others, this is what I had. This is what’s wrong with me.
And I remember reading Alice James’s diary, the sister of William and Henry James, while I was sick. And there’s this incredible moment where she’s been diagnosed with hysteria her whole life, and oh, my God, she’s gone through this, that, and the other. She’s been given the milk therapy and that. And just, her life has not ever become what she wanted it to be. It’s thought that she has mental illness, which she may well have had. She gets a diagnosis of breast cancer finally near the end of her life, and she rejoices in her diary, to him who waits, all things come.
And she says, ever since I’ve been ill, I have longed and longed for some palpable disease. And it just could have been my words. So I think there’s that part of the chronic illness reality, too, which is, you may or may not have a diagnosis with these kinds of contested illnesses that we’re talking about. If you do in the case of, say, long Covid, it’s not exactly clear yet what that diagnosis means. We’re still learning about it.
And we live in a culture that really subscribes to the muscle through it. What doesn’t kill you makes you stronger. You’re going to get over it. And so we have these narratives which are of overcoming or of succumbing kind of spiritually and beautifully. We don’t have a popular cultural narrative of chronic illness. No one wants to listen to that. It’s hard to listen to. It’s a hard, chaotic story to hear.
So let’s keep following your story, right? My basic template for understanding how people can think about chronic illness is that there are four categories. One category is the it’s not real at all analysis, where you are the princess in your family. You want attention. You have some minor aches and pains. You blow them up because you like being sick. You like seeing doctors. You like attention, and so on, right? So that’s phase A. So you went through that phase.
Right, exactly. And my great-aunt Gert was thought to be that person.
She was bedridden and everyone would say at parties, oh, well, Gert, she likes to be sick.
Right, she likes people around her bed.
She likes people around her bed, yeah.
Right, so then a second theory is a more sympathetic vision of sort of mind-body connection which says, no, your illness is psychogenic, meaning that it doesn’t have a sort of specific pathogenic cause. It’s connected to some kind of mass event like the onset of Covid or some kind of trauma in your own life that then has physical manifestations, and that’s real. You’re not faking it. But it’s not something that if you treat it, you can’t treat it with a drug.
Then the third phase — and this is where the first diagnosis really that you are given — is the sort of autoimmune category, where something has happened to trigger your immune system in a way that it effectively can’t turn off and is constantly either overly alarmed or attacking your own body, instead of a pathogen. And that was the first diagnosis that you were given that helped you.
That’s exactly right. And that’s what started this book project, was I became really interested in why it had taken so long for me to get that diagnosis. And I do have autoimmune thyroiditis. I still have it. I am given a medicine for it and it does help.
Autoimmune thyroiditis is where your thyroid —
Can you just explain?
Sure, absolutely. So your thyroid is being attacked by your own immune system. So again, it’s sort of this, if we stay with the war models, which some people like to move away from, but they can be very useful. As you talk about —
As you know, I’m a defender —
— a defender of the war model.
I kind of come down on both sides in my book, but it is useful. Basically, your immune system is trying to attack these pathogens and get rid of them. It makes this fundamental mistake, right? And the question is why. But it makes a mistake. And it starts attacking your own organ, possibly through something called molecular mimicry, where it’s trying to attack a viral protein that turns out to look like a molecule from your thyroid. And so it ends up attacking your thyroid by mistake. That’s one theory. People don’t exactly know.
But in my case, right, my body was attacking and destroying my own thyroid, and that meant that I had low thyroid levels. So the thyroid helps kind of your metabolism. It can make you sluggish and fatigued. So it was a really credible explanation of why I was fatigued and sluggish. And I have it, but the problem was that when I took the medication, it only made a very small difference in my symptoms.
And so now you’re in your mid-30s.
I’m in my mid-30s. This would have been in 2012, early 2012. And it took two more years of searching for answers in which — we can talk about this — but in which I basically began to experiment on myself and to treat myself as an experimental subject when I realized that the rheumatologist basically said, well, you have something that looks like a connective tissue disease like lupus, but it’s not lupus, but I don’t know. And it’s not really — your labs don’t make it seem that severe, so I’m not sure why you’re so sick.
And then the neurologist said, well, I see this is happening, but I don’t know why, and over time, came to the diagnosis of tick-borne illness, which at first, I was really skeptical of, but ended up going down that road. So, right, the sort of —
So which gets you and that’s sort of the fourth— we’ll get into the specifics of Lyme disease, but sort of the fourth theory or category. And this obviously applies back to the long Covid debate, is after autoimmune, it’s residual infection. It’s the idea that you get an infection, and you have an acute phase and your body fights it. But then it never clears it. And either it just stays there and you sort of stay sick, or it exists in reservoirs in your body, sort of effectively hiding from both your immune system and drugs and sort of comes back in waves at different times and places.
Right, so there’s groups of researchers now who are really digging into this question of, does the Lyme bacteria persist in your body? Do other kinds of viruses persist in your body? We have strong evidence that Ebola persists in the body for up to years. We’ve found it in semen, for example. So there’s researchers who are really using tools that have never existed before. Sort of, there’s new technologies that are letting researchers really look into these pathogen reservoirs in connective tissue and brain tissue. It’s something that’s really hard to study because you need to do autopsies, basically, right?
So that’s one reason this is actually a kind of — I don’t think when I first was told about the possibility that I had a tick borne illness that I credited very much of this at the time. I didn’t know very much because I didn’t know how little it had been studied in a certain way.
But yeah, just to take you back to my story for a second, I kind of lived with autoimmune — I definitely have autoimmune stuff. There’s a lot going on in my family there. And so it seemed like a really logical explanation, except that none of my autoimmune markers were nearly as severe as my disease was, which could have just been the case, but eventually led me to a test that was suggestive of the fact that I had Babesia, which I did test positive for, and something called an [INAUDIBLE] Lyme disease.
And so you’re from New England. I’m from New England, right? And we both, in different ways, grew up with Lyme disease sort of in the background of our lives. But interestingly, both of us, in very different experiences, sort of didn’t take it seriously, I would say. And the reason for that basically seems to be — so Lyme disease is a tick borne illness. It’s discovered effectively in the 1970s around Lyme and Old Lyme, these two really lovely towns on the Long Island sound, where you love to take a long walk in the woods or in the marshes. And —
And then lie on the grass.
And then lie on the grass, and a tick, a deer tick, which carries Lyme disease and other pathogens, will embed itself in you and deliver them into your system. But from the start, there were sort of two realities. One was that the doctors were looking at what seemed like a pretty consistent set of symptoms where a lot of people who got Lyme disease got this famous bull’s eye rash around the tick bite. That was sort of a clear indicator that you were sick at the initial stage. That sort of offered very clear diagnostic criteria, which doctors, for understandable reasons, like. And then once you treated people with that condition with antibiotics, most of them got better. And then some of them didn’t.
Right? And it led to this separation where there was a mainstream consensus that Lyme disease was a serious illness, but also pretty easy to diagnose and treat. And then there was this other category of patients who had something that eventually got termed post-treatment Lyme Disease Syndrome, which you will notice is not described as Lyme disease itself.
Or chronic Lyme.
Or chronic Lyme, which is the term that patients actually use. But they were off sort of in their own category, being treated by a somewhat eccentric group of doctors and sort of separated from the main body of received medical wisdom. And so that was the backdrop, I think, for both of us, where I understood Lyme as, yeah, as something serious. And if you got it, you got a bull’s eye rash. And so you knew you had it, and you needed to treat quickly with antibiotics, or else, you might get arthritis and serious problems later on. And also that you would test for it, right?
And the test would show whether you had it or not. But then the reality is considerably more complicated because in your case, right, so you had, let’s sort of assume what I think is reasonable to assume, that when you got really sick in your early 20s in Stony Creek, Connecticut, which anyone who ever goes to Stony Creek and knows anything about ticks would say it’s a great place to —
For ticks. But you didn’t have a bull’s eye rash.
You didn’t have swollen knees a few months afterward. You just got sick in other ways very gradually. And then, finally, you had a doctor suggest that you get tested for Lyme disease in your 30s, right, instead of the zone of maximum suffering. And what happens?
Well, I get this equivocal— equivocal from my perspective— equivocal test result, probably not equivocal from the CDC’s perspective.
From the CDC’s perspective, your test result would have been negative, right?
From the CDC’s perspective — I like to be really clear about this — I was negative.
Which means that there are certain bands that activate.
Yes, so complicated.
Right, we’ll lift up from this complexity in a second. But there are bands that activate in the presence of antibodies. And you probably had three bands activate, and the CDC requires five to activate for a diagnosis.
Yes. So my infectious disease doctor, who I credit with being evidence-based and open-minded, said it does not seem unreasonable to imagine that you were infected with Lyme disease. What she wasn’t sure was, is that the cause of your symptoms? And that left me in this very strange position of having to, in effect, decide, was I going to become a Lyme disease patient?
Were you going to join the culture?
Was I going to join the culture, right? And I think even our listeners who haven’t experienced something like this can kind of understand that there are these junctures in your life where you’re presented with uncertainty, and you have to make a decision. And Ross, I think like you, I was used to assimilating information and reading and making a judgment. And so that’s what I started to do, right? I didn’t just run off and start taking antibiotics. I actually didn’t take antibiotics for another six months after getting this test.
I hesitated, which I think, to some people in retrospect, seems really strange and certainly seems strange to my husband, who’s a very rational person and said, just as you’ve said, you’ve tried all these other things. Why not take some antibiotics, the one thing that is really sanctioned by the medical establishment? But I wasn’t at that point a chronic Lyme patient. I was a patient who had been infected with Lyme and never treated for it, which you actually never even read. There’s nothing out there that says, here’s what you do if you’re that patient. Basically, what the CDC says is, there’s no evidence that antibiotics work for a patient like you.
So I made the plunge eventually, right? And one of the reasons I made the plunge was that I read all of the studies. And I’m not a doctor, but I am a reporter. And it just wasn’t clear that the evidence was as definitive that antibiotics didn’t work, as I was being told. It just wasn’t clear. And what I found in my reporting, which I know you found, too, was that there was this real divide among high-level researchers, accredited academic institutions, where it wasn’t just my instinct, right?
It was then when I talked to scientists, they were saying, we are not confident that we have the answers here. We think there is evidence that the Lyme bacteria persists even after the standard course of treatment. But it became so politicized with the mainstream experts really doubling down on this is just not a disease that persists after treatment. It’s really unwise to continue to take antibiotics. This is the line of thinking that they’re coming to the table with and for good reasons, right? Antibiotics are not things you should just take willy nilly.
So what we’re talking about is what Michael Specter called the Lyme wars at this point. You and I enter the idea that we might have Lyme disease, very cognizant that there’s essentially an all-out scientific war happening over what is the very nature of this disease, let alone how do you treat it.
So you took the antibiotics, and what happens?
So I took the antibiotics, and I actually ended up taking various sets of them. But I immediately, within the first three weeks of doxycycline, had this kind of intense reaction known as the Jarisch Herxheimer reaction, right, where you get much, much sicker. And the idea is that the bacteria are dying, and your body’s kind of clearing them out and having a reaction to that. And I did have that. I mean, it was intense. It felt like rain was falling over my body. And then I really was, in three weeks, was noticeably better, which I think is a different experience from what you had. But to me, it was like, if you’re talking about evidence and I had this little chart, and I would chart my symptoms, I mean, noticeably better, from almost bedridden to being able to run. That wasn’t the end of it. It took a long time to keep ratcheting upward in time, but it was really hard to disbelieve the evidence in my own body, not just in front of my eyes, that the antibiotics were making me better. I went into it, thinking, this is going to do nothing. But it was very clear that it did something. And I got mostly better.
So my case is sort of the opposite, where I got sick six years ago now, while we were moving to Connecticut, buying a house in the country, this whole grand delusion of the rural life. I got sick very, very rapidly, not sort of things picking up and pinging over time. But over the course of three months, I had phantom heart attacks. I was sleeping an hour a night. I lost 40 pounds. I couldn’t eat. It was just sort of disastrous.
So instead of the long experience of descent, I had the short experience of descent. And then once we actually made the move to Connecticut, we were coming from Washington, DC. I quickly found a lot of doctors who said this really seems like a tick-borne illness. And they started giving me antibiotics. And I had the hesitancy that you had, but it was over the course of two weeks, instead of six months. I started taking them. I immediately stabilized in the sense of no longer going to the emergency room every three weeks with horrible chest pain, being able to sleep four or five hours instead of one.
But then it took me a very long time, many years, to figure out what mix of treatments would take me from being stabilized, but still suffering tremendously to actually getting better. And what struck me throughout that experience was something that has given me a lot of sympathy for the medical establishment as it confronts these cases, right? Because in your book, you talk about this as the germ theory of disease, right?
The basic, the foundation of the success of Western medicine is the idea that you have an invading pathogen, you find something to treat it, and people either get better or they don’t. And you can test this, right? You can do a double blind placebo controlled trial of a drug and see whether it works or not by giving it to someone for four to six weeks.
And I spent not four to six weeks, but three to five years working through different combinations of antibiotics, different combinations of herbal supplements to go with the antibiotics, and a bunch of much stranger stuff in order to figure out how to get better. And I don’t believe it worked. It did work. It saved my life.
But if I were to go to a major research university and be asked, well, how could you design a double blind controlled trial to study this, right, it’s like, oh, well, do you have patients who can go in your program for three years and do this right? And this gets at, I think, one of the really interesting points in your book, right, which is just that there are ways in which the very success of how we treat acute illnesses means that the medical system we have, just, it’s not set up to treat chronic illness at all. And not out of malignant, conspiratorial evil, but because it’s really hard to transition your models of care from acute illness to something where you’re basically asking doctors to be artists and sort of follow patients over years and years and years.
And when you see these doctors who treat chronic patients, you sit down with them, and they’ll give you a 10-page questionnaire to fill out and spend two hours talking to you about your disease history, which is not something that can go on in doctors’ offices, as they’re set up right now. And so this is to go from sort of people treating long Covid to people thinking about chronic illness generally. What are the models for medical care that you can imagine spreading beyond this sort of eccentric fringe to help people who have these kind of illnesses?
Well, I have two answers to that question, and also just want to echo everything you’ve just said. And the first would be thinking about research. You capture this really wonderfully in your book, and it’s something I really spent a lot of time thinking about and trying to capture, which is this question of, let’s say you have an illness that’s at the edge of medical knowledge, right? That was sort of my framework. I had this map in my mind, and I’m standing at the edge of the map.
So why was it that it was so hard not just to get treatment, right? I understood that. No one knows exactly what’s wrong with me. But even to get recognition that something was really happening, right? I kept thinking of this analogy that, can you imagine going to a restaurant, sitting down, and the chef comes over and says, what would you like? And you’d say, I’m really hungry for a steak. I really feel like a steak. And he says, well, I’m not sure you want a steak. I think maybe you actually — you’re not hungry at all, right? And that was sometimes what it felt like to go to the doctor.
But part of this is that medicine is, as you said, based on germ theory, germ theory comes along. It saves our lives. We have longer lives than ever. And germ theory is based on those postulates that say germs elicit a very specific set of symptoms that are similar across patients and people. And that can be treated in very similar ways and then go away. And I think what we’ve seen vividly dramatized by long Covid is that pathogens can actually have very different effects on the human body. And this is really the kind of forefront of a new paradigm of medical science, right? A lot of research today is looking at this question of, how do pathogens act differently in different bodies?
Now, one thing that you get at really well in your book is that the culture of medicine is, in some sense, essentially conservative. It is based on institutional support. It’s based on consensus of reviewers. It’s based on trying to do no harm. It’s based on what can we establish as a baseline of hard evidence and build on from there. But I think as Covid is also vividly dramatized, when you’re looking at novel pathogens, it takes a long time and there’s a lot of mistakes along the way and understanding that, right?
So when I think about how might medicine, as it pivots to try to look more globally at what some researchers are calling infection associated illnesses, where we truly don’t know, is there persistence? Are there viral reservoirs, bacterial reservoirs? Is there incredible autoimmune activity? Is there all of the above? What I think medicine needs to do is adapt, kind of on the research front, what one source I was talking to recently who runs a big foundation on background said.
We need almost these seed funds, right, where you have the kind of standard conservative step-by-step process, and then you have places and federal support of kind of real experimental, out-of-the-box ideas, right? To move Alzheimer’s research forward, let’s try this idea. But there’s so much fear of failing or betting on the wrong thing that research can be just very slow to include all the avenues of possible treatment that it might. So I think there’s that. There’s this question of how can we research in a more open way while still being based on evidence.
And then the second is the clinical end of it. And in this very, very siloed medical culture, which is something I spent a long time talking about that we live in a medical system where you might end up with 12 doctors as a patient with one of these infection-associated illnesses, because you might have neurological symptoms. You might have joint problems. You might have connective tissue problems. You might have lung problems.
What we need are organizations and institutions that facilitate true communication across silos, that kind of do away with silos, silos being this kind of each doctor works in their specialty, but the neurologist is not talking to the pulmonologist. So instead, there are these models. The Mount Sinai Center for Post-Covid Care is one of them.
There is an Autoimmunity Institute in Pennsylvania at the Allegheny Health Network where the doctors actually all meet with the patient the same day and then kind of gather in the hall afterward and have this quarterbacking area where they all chat. And they realize things about those patients’ cases that they wouldn’t have realized because in the past, it would have taken them two years to share the medical notes, et cetera. So I think there’s a real need for kind of moving away from this silo-based medicine toward centers for care for these kinds of illnesses.
And some things like that exist right now, right.
Some things like that, mm-hmm.
But they’re expensive.
They’re really expensive. They’re all pretty much in the experimental mode right now, right? And I think that there’s a lot of people waiting to see, does this work? And part of the reason that they’re expensive is that you have to spend a lot of time with a chronically ill patient. I mean, of course, there’s certain kinds of chronic illness that are a little more cut and dried, but the kind that we’re talking about where the immune system — I really think about it as these immune mediated illnesses, that we’re still at the tip of the iceberg of understanding, if we’re even there.
These doctors are like detectives. They have to spend a lot of time looking at the patient, looking at the labs, talking to one another. As one source at the Autoimmunity Institute told me, he’s like, we see things no one has ever documented. It takes us a long time to find that showing up in the lab work, to elicit the patient’s history in the right way. So we need time, and we need a less bureaucratic and more communicative clinical care system.
That issue of expense gets at something that I think both you and I are well aware of, which is that we are, in different ways, but overlapping way, is, I would say, extremely privileged people.
Meaning not just that we have sort of the financial wherewithal to pay to see doctors who don’t take insurance, but also that we’re, shall we say, overeducated, hyper educated?
We spend a lot of time on the internet. Ideally, we know pretty well how to sort of sift the internet and try and distinguish what is plausible from what is crankishness and so on. And given all those advantages, between the two of us, we spent 24-odd years of accumulated time being incredibly sick without having a clear way to get better, which, when I try to imagine my own experience or your experience for people who come from a different class background, are, for various reasons, less likely to be able to see lots of doctors, less likely to get doctors to take them seriously, if they are able to work, less likely to have the time to not work while trying to figure out how to get better, I think it casts a unique and very, very depressing light on things like the epidemic of chronic pain in working-class America, right?
Which, again, I think from the perspective of sort of the average Acela corridor dweller, there’s an image of that as somebody who works in a steel plant and has a bad back because of it and ends up taking opioids, being prescribed opioids or something. And obviously, that story exists. But when you’ve sort of wandered through the worlds of chronic illness, it’s very easy to imagine a much more diverse and complex picture of chronic pain as having all kinds of different causes that doctors in elite areas are ill-equipped to handle, and people outside those elite areas are just getting lost.
Yes, there’s so much in what you said. And I certainly — one of the reasons I wrote the book that I wrote was not because I thought I had the worst story, right, but because, in fact, I felt very lucky to have been able to pursue treatment for as long as I did and find some answers, or at least, answers that got me to where I am now. I am highly concerned about the epidemic of long Covid. And absolutely the epidemic of chronic pain that you talk about, that’s one of a real area of interest for me. And I absolutely agree that our kind of narratives of it are limited.
I’m highly concerned that even as long Covid is being, at least, more accepted than certainly something like post-treatment Lyme disease syndrome or chronic Lyme was in its early years, we are still treating this as an individual problem. We are still treating this as an opportunity to kind of litigate are these people psychologically ill or not. We are not pulling back to think about the ways in which immune-mediated illnesses, infection associated illnesses, are a social problem and need social solutions and need medical care reforms and just different ways of thinking about policy.
And take our stories. One thing you articulate really clearly in your book that’s true of me, too, is that we could both not only afford to be sick by paying for doctor’s appointments, but we could afford to perform at lower levels and not lose our jobs and actually maybe not have everyone even notice. You’re not a waitress at a diner, standing. I do have POTS. I can’t really stand for long periods of time. When I’m really sick still, in the moments I am, I can lie down and work. There are a lot of people who do not have that luxury. If they take a day off to go to the doctor, that’s a day off unpaid. So the discourse needs to shift to look at that as a structural problem.
And the other thing I say in my book is that even if this was a problem that was widely unrecognized before, the scale of long Covid brings it to a crisis point, even as — and we haven’t really touched on this — research shows that rates of autoimmune disease are rising at just epidemic levels in western countries for reasons that aren’t fully understood, of course, but seem to be tied to questions of environment — chemicals, microbiome, trauma, pain. So there’s just a kind of paradigm shift here, I think, that needs to happen because we’re heading for a crisis. And long Covid is the thing that’s going to really put us over the edge. And we’re just at the beginning of seeing what that crisis looks like, I think.
One point you make that I think applies in different ways kind of across the political spectrum, right, is that there’s a really strong impulse, I think in Western society in particular, to individualize illness where it’s seen as something that is under your control. If you’re sick, you did something wrong. And this takes a kind of right-wing form in prosperity gospel theology. And it takes a left-wing form in The Secret, the sort of Oprah Winfrey power of positive thinking stuff.
Or it takes a right-wing form pre-Covid, where people would say, oh, well, people who don’t get insurance shouldn’t be treated because they should have taken responsibility for themselves. But now you have liberals saying the same thing about the unvaccinated, right? There’s this desire to sort of link responsibility to health, right? Which is reasonable up to a point, right? Your health is under your control, to some extent.
But much of the experience of chronic illness is just sort of realizing your loss of control and trying to reclaim control, right? Neither of our books ends in some sort of place of total mystery, where it’s like, oh, you just have to learn to live with your illness and accept what the universe has given you. No, you can actually get better from a chronic illness. This is a really important point. You can get better. But in the course of getting better, you also have to give up on certain highly, yeah, highly individualistic conceptions.
Well, and what does better mean, right? So I think that was what I end up wrestling with. And there probably are people who can’t get better, right, and some of us who can. And I feel really lucky that — and I say this in the book. I feel incredibly lucky that I, to some degree, got better. And you can’t see me, but I have air quotes. But what does better mean? Better is not what I thought it meant when I first started trying to get better, right? For me, better means I can live my life, I can have a conversation like this one with you, and my brain is, more or less, working. I can run with my children along the beach. I can hold a job. I feel joy. I experience joy. When I was sick, I could not experience joy.
But to your point about absolutely, this is a phenomenon, really, of our culture across spectrums, which is, it’s really hard to think about other people’s suffering. We avoid thinking about it by placing the emphasis on individual responsibility in negative or positive ways, and celebrating those individuals who overcome, while not looking at the structural and systemic reasons that others are not overcoming and are sick in the first place.
And to pivot a bit from politics back to sort of medical science and medical politics, one concrete I hope I have that I didn’t get to mention that I think Ed Yong outlined really beautifully the need for in one of his recent Atlantic pieces is, patients have to be a much bigger part of research. Patients have to be valid testifiers about their own experience, right? I talk about in my book the British philosopher Miranda Fricker, who uses the term “testimonial injustice” to describe the way that prejudice against a group really unfairly undermines the credibility of an individual within it.
And I think that even to this day, despite the rise of patients’ rights, not just in medicine, but all of us culturally, to some degree, are suspicious of patients. We sort of unfairly undermine them. There’s something about as soon as you’re a patient, some authority gets stripped from you in our eyes. I think it’s a really deep, irrational response. And I think it colors medicine to this day. And I’m really hoping that advocacy efforts of groups like Patient-Led Research Collaborative are really going to help bring about a change in the kind of voices that patients have in not only sharing their stories, but kind of directing potential avenues for research.
So I want to follow up for a minute on that concept of testimonial injustice, because one thing we know is that patients whose chronic illnesses aren’t taken seriously by doctors are more likely to be female patients, more likely to be women. So can you talk a little bit about the role that gender plays in chronic illness and chronic illness debates?
Yeah, absolutely. I mean, before I’d gotten sick, I just had assumed that the medical system would care for me as well as it possibly could with objective rigor. And I think as I became more entangled in the medical system and as I reported this book — so this is based, really, also on a lot of reporting I did. I spoke to more than 100 patients, many of them women. I just discovered that it remains remarkably challenging for women to get consistent access to first-rate care. That becomes all the more true if you’re a woman of color.
So there’s wonderful histories showing how medicine treats women differently from the way it treats men. There’s Barbara Ehrenreich and Deirdre English’s “For Her Own Good: Two Centuries of Experts’ Advice to Women,” which really traces a kind of history of thinking about women and care back to the epidemic of turning to hysteria as a medical diagnosis in the 19th century, which is something I talk about in my book.
But notably, there’s two big differences. Research fails to consider the differences in male and female biology, including disparities in how people of different sexes respond to pharmaceutical drugs. For example, we metabolize them differently, they work on us differently. And yet many studies, for a long time, included overwhelmingly men in the studies, or even only men. Animal studies are often done on biologically male animals.
On top of that knowledge gap that’s created by the lack of research, there’s what happens when you walk into a doctor’s office as a woman. And part of what happens is that your testimony is seen as gendered, subjective testimony, especially around pain. And it has real implications for how you are treated. So your pain tends to be treated less promptly and less thoroughly than men’s pain. You are often disbelieved or told that you are suffering from what’s called a somatoform disorder, which is the kind of present day version of hysteria. It’s a disease where you are experiencing physical symptoms that are created by a psychological trauma.
So this is a kind of default that showed up in my reporting that I think 90 of the 100 women I interviewed were told to seek psychiatric help, not to support their depression going out of an organic physical illness, but because the doctors thought that what the real problem they had was a psychiatric one and that there was no physical, organic illness. And yet, almost all of those women ended up with a very clear cut medical diagnosis within three years. So we have a lot of evidence just showing that doctors listening to women’s testimony don’t credit it.
Part of the fascination, right, of this experience is that on the one hand, when the medical system is set up to be intensely material in its biases — you are identifying a pathogen, you are not supposed to be spiritual or supernatural in your diagnosis — but then there is this very quick default to mystery that’s in this, again, supposedly highly materialist profession, that the mystery is defined as stress. Some name is given to it. But the actual answer is, the body is mysterious, and therefore, we can’t help you, which the body is mysterious, but people still need help.
And as you’re getting at and as you and I have talked about, there is a real mind-body relationship, and there is very good evidence for stress having deleterious effects on your body or anxiety having bad effects on your body. The question, as one really good physician put it to me, is, everyone experiences stress. Why is it becoming pathological in some people? And as he put it, he was like, I think it’s because you have an underlying stressor, which is an infection.
So my suspicion is, in 100 years, researchers and doctors are going to look back at this phase in American medicine with some sense of the crudeness with which we’re talking about stress in the mind or the body or referring person to a psychiatrist or to this, as opposed to seeing this very intertwined ecosystem where the mind — after all, the brain is in the body — is affected by an infection. Sometimes it’s infected by chemicals. It’s affected by other things and vice versa, right? So we talk so much about psychosomatic, and I found myself thinking a lot about this idea of the somapsychiatric, too, right? Like the ways the body leads the mind.
So here’s one point that I want to stress myself. Throughout this conversation, we’ve both been pretty critical of the medical establishment — and with justification, I think. You have the dismissal of patient symptoms and patient testimony. You have misdiagnoses and sort of overconfidence in diagnosis. And then there’s just the reality that sometimes when you go to the edges of medicine and you find something that works for you, it’s something that’s just not part of official knowledge, like taking lots of antibiotics for Lyme disease, right, even if it’s not what the CDC officially recommends.
But then the question is, can you integrate those kind of experiences, that kind of hard-earned skepticism of what official medicine says, into a world picture where you still also accept that the medical establishment is right about a lot of things? Because the alternative is to sort of go to the fringes and then kind of fall off the map, right, into a world where you say, well, the medical establishment was wrong about my Lyme disease, my chronic illness. And so, it’s probably wrong as well about vaccines or about chemotherapy.
And I think we’re both trying to strike a balance here where realizing that the establishment gets things wrong doesn’t mean that you throw out establishment wisdom altogether. But it seems like if you look at our debates — and this doesn’t just apply to medicine — it’s really hard to strike that balance. And the tendency is either to be sort of fully in a kind of establishment, do what capital S Science says camp, or to reject official knowledge altogether and look for authorities completely outside official knowledge.
A question I have is, are there actually a lot of people out there like you and me who don’t have a distrust of institutions and a disregard for expertise but do have critical faculties that they can bring to bear on medical science and culture to ask, is this the best possible version of medical science?
Medical science, like anything else, can be politicized, can make mistakes, can find it hard to acknowledge mistakes due to politicization, right? We know that medical science has made major mistakes. We look at the Tuskegee experiment with syphilis and how it withheld penicillin from Black men who were shown to have syphilis to see what the course of the disease is. In some cases, the distrust of the establishment has really reasonable origins.
So what I would really love to understand more — I mean, I guess, yeah, I’m echoing what you say, Ross. I hope that there’s a way to thread the needle. I think of myself as someone who absolutely have tremendous faith in science. Science is what’s going to get us out of this. The question is, is that science being politicized? Is medicine looking at the historical origins for its distrust of patients’ testimony, particularly female patients? Does it understand why it has that distrust? Does it understand its own faith and measurement? And has it held itself accountable for what to do when measurement fails it?
And maybe that points to a good place for us to conclude, which is, we’ve been talking specifically about long Covid and chronic Lyme, but for anyone listening who is dealing with some kind of problem that won’t go away, as a veteran of that kind of experience, what’s your advice?
I think that you have to be your own advocate and pull in anyone who can also be an advocate for you. I do think that we know a lot more about our bodies than patients are sometimes credited as knowing. On the face of it, when I look back, it’s really clear to me I lost a decade of my life, because I didn’t trust my own intuitions about what was happening to me, right? That I did listen to my very lovely doctors and I didn’t push for answers. And if I had earlier on pushed for more answers, maybe I would have had my 30s, right? I kind of didn’t have a 30s. I was sick the entire decade.
So I do think just continuing to search for the physician out there who will be a partner in your treatment and your healing, knowing when to listen to things that are hard to hear, right? There were things that my doctors told me. For example, my wonderful primary care physician told me, look, you’re always going to be at 80 percent. And she’s, more or less, right. I didn’t want to hear it, but more or less. Sometimes I’m at 85, but that’s true, right? And sometimes you have to accept certain limitations. But I think you know when you click with a physician who’s really going to care for you and understand what you’re saying.
I think the other thing is the more you can find a system where your specialists speak to each other — I did not understand how important that was. I had a specialist here, a specialist there. And I think that was something that I was just naïve about. I didn’t understand how hard it would be to move test results from one to the other. So really working with the system as it’s constructed, but also having faith in yourself and finding support in those friends and colleagues and family members who credit your experience and not letting go of the authenticity of your experience and your knowledge of it.
And apart from the quest for care and treatment, how do you keep going, just generally? I mean, I would say, there is this line from Jesse “The Body” Ventura right, the noted political philosopher, where he was criticizing religion. And he said religion is a crutch for weak people. And as a religious person 10 years ago, I would have attacked that line. And as a religious person who’s been a sick person, I would say, yeah, absolutely, that was a crutch. You need crutches. You need to find reasons to keep going, reasons to live. What was the strongest thing that kept you going?
Such a great question. So I am not someone with a practicing religion, but I think some of my earliest experiences of life luckily were ones of joy. I’m a poet of just sensation, of reading and walking in a cold stream. There’s a beautiful scene in your book where you talk about sort of belly flopping into the freezing ocean as you used to as a boy, even though you were in pain, just to have that sensation of joy again, right, of what it is to be alive.
And I think that’s what kept me going. I remember sitting on the couch in the darkest month of my illness and just having this very clear image that I was dying, and also that I didn’t want to, and that there was this pilot flame was what I saw in my mind. There was this little pilot flame that was me. And it was going out, but it was there. And I was very exhausted at that point. I had just tried so many doctors. I’d gone down so many avenues. And the disappointment, as you can imagine, is heartbreaking, right? You get your hopes up and then to be crushed.
So that was when I was deciding whether to do the Lyme disease treatment. I was really exhausted. And yeah, it was that sense of connecting to that pilot flame, connecting to joy, connecting to possibility. I had a very vivid kind of vision of the possibility that lay ahead in that moment. And I just thought, OK, I’ve got to do this. But it’s hard. It’s really poorly understood how hard it is.
Hope is a thing with feathers, right?
I think that flame is a beautiful image and one — to me, it was like, there was always a version of myself that was still in there. And as long as you could hold on to that, you could imagine life existing maybe not in full, but enjoy at least again. So, as a poet and a literary person and a reader of books one of the customs on this show that I’m carrying on in Ezra’s absence is asking for book recommendations. So I’m wondering if you could give our listeners three book recommendations of things that Meghan O’Rourke thinks they should read.
Well, actually, I do have some recommendations. And they might be hard to find. One of them might be hard to find. But I absolutely love a book that is hard to find in print, but you can find it. And it’s called “The Journal of a Disappointed Man” by W.N.P. Barbellion. And it’s a diary that was kept over the years by this young man who wanted to become a zoologist in the early 20th century. And he has MS. So it’s really a record of his experience. And Ross, it toggles between what we’re talking about of just the frustration of being sickness and the excitement of his mind and his love for nature and his desire to be a zoologist. It’s just an extraordinary book. And it kind of kept me company when I felt really alone.
A more contemporary book that I love for the way that it looks at kind of scientific culture and cultural narratives around things like vaccination is Eula Biss’s “On Immunity: An Inoculation.” That’s a book I really love. Another book that I thought was extraordinary was Audre Lorde’s cancer journal, which was kind of keeping track of what it was like to be diagnosed with and have cancer and get a mastectomy and is very sharp on, again, kind of the ways in which a sick body intersects with pre-existing cultural narratives and just an extraordinary piece of writing.
Well, I will say after those three terrific recommendations that Meghan has been incredibly kind to come on and record this show while I’m guest hosting at a time when my own book is coming out and hers is not yet out for four or five months. And I’ll just say that Meghan’s book is absolutely terrific.
And I hope that listeners will reward her and ease her publicist’s despair by responding to this interview with many, many preorders, because it really is just a terrific book that has an incredibly wide lens, I think, precisely because you were sick so long without knowing, and so it covers not all, but almost all of the territory of this incredibly complicated chronic disease debate. So, Meghan O’Rourke, thank you again so much for this conversation.
Oh, thank you so much for having me, Ross.
“The Ezra Klein Show” is a production of New York Times Opinion. It is produced by Jeff Geld, Roge Karma, and Annie Galvin. It is fact-checked by Michelle Harris, and original music by Isaac Jones, mixing by Jeff Geld.