Meghan O’Rourke: When Illness is Not Validated
Writer, journalist, and poet Meghan O’Rourke—a former editor at The New Yorker, and the current editor of The Yale Review—has written stunningly, about many topics in our culture. But her latest book—The Invisible Kingdom: Reimaginging Chronic Illness—is a memoir of her own suffering as she navigated the medical world in search of a diagnosis. Her journey to understand what is wrong with her—to even be seen as a sick person—was particularly complex because she has a web of autoimmune diseases, which…is not that uncommon, actually, particularly for younger women. In her book, she explores the complexity of illness and what it means to look fine—vital, even—and yet feel like you’re failing inside, and how quick we are to dismiss suffering we cannot see. Particularly when it’s the suffering of women. I loved our conversation on Pulling the Thread.
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TRANSCRIPT:
(Edited slightly for clarity.)
ELISE LOEHNEN:
How are you feeling? Let's start there.
MEGHAN O’ROURKE:
I'm okay. I'm okay. I'm doing okay. I say to a friend and who is also chronically ill, and also mostly functional like me, you know, I was like, I've got my hacks. I sort of live on my little coping mechanisms that get me by. Actually, we took a vacation last week, which means that I'm feeling a little less well than usual. Cause anytime I have to go out of my little set of routines and foods and everything, I do end up feeling a little sicker.
ELISE:
And you have kids.
MEGHAN:
And I have kids and they both had croup on our vacation. So it was, family time as a friend of mine put it, not vacation.
ELISE:
Oh yeah. They’re trips, not vacations. We have like, I think every family does this, we always have at least one bag in our hands as we head to the airport because someone has started puking the night before. It's like vacation: Let's go be sick in a hotel.
MEGHAN:
That's exactly what happened to us.
ELISE:
My youngest or was coughing this morning and I was like, great, let's clear this out just in time for me to get sick. Right before we get on the plane anyway. Well I'm glad you're feeling well. And thank you for your book. I feel like there are so many beautiful moments throughout, you're such a beautiful writer, so congratulations. I know, the invisibility, as you say, sort of The Invisible Kingdom, and the invisibility of so many of these chronic diseases, which typically impact a lot more women than men, it's all these layers of compounding issues as you delineate, the way that it has Venn diagrammed in your body is, you know, a fascinating cultural. I mean, I know it's not fascinating because it's your body, but it is quite meta.
MEGHAN:
It is. And you know, I felt like there were moments when I was sick where I was fascinated. Not in a like happy way, but as you're saying, like, there are all these reasons where in the situation, which are not immediately evident and that's quite interesting.
ELISE:
And just this fact, you know, that you talk a lot about, if you don't mind if I read to you, early on in the book, you talk about going to see one of your, just going to see a doctor and feeling dismissed and you write, “Her office was busy, and she had patronized me, and rushed me out the door. I felt more acutely alone than ever. I had no ally. Worse, the encounter left me with a rusty taste in my mouth. A sense that perhaps I didn't deserve an ally. But this is a strange thing about a vulnerability that remains unseen by others. An illness that is unacknowledged by society. It is the sick person whose worldview warps. And the wounded one who absorbs the idea that the most indelible aspect of her present condition is in fact, a defect, a distortion of her own making.” But this is the experience, right, that so many feel.
And I frequently say my dad's a doctor, my mom's a nurse. I grew up filing charts in the medical office. I served trays in the hospital cafeteria. I, an intimately aware, I mean, I'm not in healthcare, but of how that system works. And I have a lot of respect and reverence for it, but it's very broken. And as someone who has tried everything in your pursuit of feeling better and your pursuit of the diagnosis, really, how would you remake a patient centered world? What would that have looked like?
MEGHAN:
Hmm, such a good question. And, you know, by the way, I hope it does come through in the book that I too have reverence in a lot of respect for the medical system and certainly for the individual professionals within it, who are trying really hard despite a broken system to deliver care. But the system's broken. So, and it's really good at acute care. It's really set up for crisis care. It's not set up for chronic illness care, and in particular, chronic chronic illness care for people whose illnesses roam the body. And maybe our still poorly understood, like mine really are. Even though I have diagnoses, I have these diagnoses that kind of cluster at the edge of knowledge in a lot of ways. So I think the first thing I would do when we're talking about these complex systemic illnesses, like autoimmune disease or, myalgic encephalomyelitis, chronic fatigue syndrome, and now of course long-COVID, is create coordinated care.
I think the first thing is just alleviating the burden of having to schlep from doctor, to doctor, to doctor, but also finding ways for those doctors to have time to spend with you. And this is the big financial piece that I have no answer for, which is how do we finance a system where doctors can really spend time with patients who have these complicated illnesses that need a lot of investigation. There's a lot of listening a doctor has to do to clues, and then collaborating. There's a center in Pennsylvania called The Autoimmunity Institute that I write about briefly in the book, and what appeals to me about them is that they have this real-time huddle hall, they call it, where the doctors get together and talk in real time about patients with really complicated autoimmune diseases. And they told me that once a week, they have these kind of mystery conferences where they'll talk about someone whose case they can't quite figure out. And maybe that person's main contact is a neurologist, but the neurologist will be talking, and the rheumatologist in the room will suddenly have an insight like, well, have you ever read this study? And there's so many people who need that kind of care. Where there is a kind of intellectual curiosity on the part of their doctors, and those doctors have the time to pursue it.
ELISE:
It's like House, you know, so many of the fantasies that we're sold about how medicine works come from TV. It’s fantasy, but it's a good idea, right? Like, as you said, those are the moments of, and I think you see this in teaching hospitals sometimes where you have these clusters of residents who are spitballing. And I remember my dad, my dad grew up in South Africa and he did his residency at the Mayo Clinic. And they were discussing a patient and hopefully I'm not butchering these facts, but they were discussing a patient and essentially and my dad was listening, and they couldn't figure out what was happening systemically in this patient. And my dad was like, well, did his flight where did his flight connect? He had stepped off a plane in Africa. He had malaria.
But because my dad had, is from Africa, he grew up in Africa. He was able to figure out what was going on just in that quorum-based approach. The wisdom of the crowd, and that sort of reflective care, and to feel, I think, you know, as a patient to know that you're not yelling into a vacuum, but that there's actually a desire to understand you. I mean that seemed to be such a through-line, that very human need. Do I matter, is anyone seeing me, can anyone reflect my reality? Can anyone tell me that they believe me, even though I don't look sick? That feels so sort of essential and primal in your book, that equality that, as you mentioned, like people don't have time. They don't have the answers. It's so hard to say, I don't know, but I will figure it out.
MEGHAN:
I think that medicine doesn't train doctors to be vulnerable. And to deal with uncertainty. It's interesting. I was talking to a doctor who's just written a piece about how the pandemic has brought that kind of vulnerability into healthcare in a really visible way. Because doctors also got COVID, and were as uncertain as all of us about what it really was. It's remarkable how powerful. And I think one reason I wrote the book is that the lack of recognition is such a powerful harm done to patients. And I think until you've gone through an experience like this, it's really hard to convey why that is. But basically it comes down to having the dignity of your suffering possessing some kind of meaning. And we're all social creatures. We don't actually get sick totally alone. It feels lonely. But one reason that my illness was doubly hard was that I had the loneliness of physical symptoms. And then I had the additional of never having them recognized or validated, which made it so much harder. I think if you feel that other people see your suffering and understand at least some aspect of it, the fact of it, you can kind of carry on. But to be robbed, even of the dignity of your suffering is really, it's incredibly, what's the word I'm looking for? Demoralizing.
ELISE:
And it took you how long, did it take to arrive at the, and is your Lyme diagnosis that didn’t feel definitive in the book, but is that definitive, or at least a factor?
MEGHAN:
It feels it's so hard to know with Lyme disease. It's very, we could do two hours, at least on the complexity of Lyme and testing. So I really do try to capture this in the book. So I can say, read the book, into the uncertainties and you'll learn about the testing there, but to those who are listening. As far as I can tell, I pretty clearly have an undiagnosed tick-borne illness. I did later. My Lyme test was itself a little bit equivocal, but when I was treated for Lyme disease, I went from being bedridden and unable to almost write sentences because cognitively I was so impaired at that point to running and being almost my normal self cognitively again within my like three weeks. So it's pretty clear that antibiotics for Lyme disease did something major to me. And I did later get a CDC positive test for another tick borne infection often, two at once. But you know, as I recount in the book, one of the things made it's astonishing that no one ever tested me for Lyme disease for many, many years.
It took close to two decades to get answers. But one complexity was that I ended up having multiple different simultaneous conditions. One of them genetic called, Ahlers Danios syndrome, another of them autoimmune, and another, a form of a nervous system disorder called dysautonomia in my case called Pots where my heart races when I stand up. And they probably are all linked actually. But it also meant that when I was being treated for thyroid disease, it helped a little bit, but not all my symptoms went away. And then when I was being treated for Lyme disease, it helped a lot. But then I still had these other symptoms cause we didn't realize I had Pots, etcetera. So I always say, I think one framework we're missing right now when we think about medicine and illness and particularly these kind of 21st-century illnesses that I feel I'm talking about, is that they can be caused by successive hits to the immune system, or an overlapping array of immunological and nervous system problems. That medicine hasn't really foregrounded in medical education. And we don't really have a public narrative for it.
ELISE:
Right. And then sort of the factors of life emotionally and otherwise can often start. You know, there can be an inciting event that might be, you know, some sort of traumatic, you know, a death in the family or something else happens that sets you going in a stress response. And then suddenly you're swamped by an emergence of latent viruses. You know, I think we probably, I don't know this for a fact at all, but that I think, you know, as someone who's had strep throughout my life, I think I have latent strep. I this an inclination to get strep when I'm stressed. I'm sure that that could be completely off-base, but it's seems like it must be in my body, ready to activate. And it seems like you described that sort of like you take a hit and then it's like the minute your defenses are shifted or down something else emerges. And I think people can relate to that, like that feeling of being subsumed, by wave after wave in a way that's oh, exhausting. My heart went out to you, as I was reading about this experience, u and being like the, the gender part of it too, right. The fact that women are, are perceived as hypochondriacs are the, the diseases that affect us for so long were not considered to be real. Now they're real.
MEGHAN:
Oh my God. Right. I mean, we could talk about this for hours too, but absolutely. I think one of the things that's so wild was realizing that what I was going through was not singular, that so many people, many of them women were going through the same thing, and that because so many of us get autoimmune diseases when we're relatively young. And in fact that age is getting younger, and the average age of onset is getting younger and younger. I think medicine tends to dismiss young women when they come in. And, you know, I talk in my book about the legacy of hysteria and there's this really complicated history there, but this 19th-century rise of diagnosing hysteria in female patients who had vague symptoms like fatigue, and brain fog, and abdominal pain. I try to suggest that that's really still with us that, you know, when Freud came along and said, by the way, after doctors couldn't fix those patients, they first thought they'd had biological illness. And then as soon as they couldn't fix them, the male doctors of the time they decided, oh, it must be in their heads because if it were real, I’d be able to fix it.
You can sort of read between the lines. I mean, that's not the formal history, but it's pretty clear when you read the texts of the time, which I did. And then Freud comes along and it's actually repressed sexuality or it's, you know, the more someone doesn't speak a symptom, the more it's likely that it's the sign of a trauma they can't speak. And so I think women are in this incredible catch-22 now where the more you go to the doctor and insist, this is real, the more your insistence is seen as a sign of something psychosomatic, your own resistance to acknowledging something mental is going on. So I found it was this incredible kind of philosophical conundrum, right? The more I would use my language to try to assert the reality of my disease, almost the more I could see that reality of becoming suspect in some eyes.
ELISE:
And it's so interesting too, like our, the instinct culturally to disparage something, the emotional and mental components of something, which are also very real and measurable, you know. You mentioned Ted Kaptchuk, you wrote about his research at Harvard into placebo and acupuncture. And I think you talked about his Irritable Bowel Syndrome study and the treatment,the discrepancy in the way that they were treated. One group brusquely, right. And the other group empathically and warmly, and the one treated with warmth, they didn't receive acupuncture. Or how did it go?
MEGHAN:
I may pull up the study cause you know, the nature of my linger, I know effects, I would say is thatI just like to verify everything. But basically yes. So I think they both had the same sham acupuncture. In fact, iit wasn't known to be acupuncture that would help, like it wasn't actually using acupuncture points. It was just…
ELISE:
Random acupuncture.
MEGHAN:
And one group group was treated by a perfunctory researcher who didn't ask them any questions and was kind of even a little rude maybe. And the other was treated by a warm researcher who would ask them questions and say, I'm so sorry you're suffering. And what was shocking was that the group treated by the empathetic researcher experienced more reduction of their symptoms than the group group treated by the brusque researcher. In fact, a really shocking part was that that reduction in symptoms was more significant than even the reduction in symptoms caused by the strongest medication we have for IBS. And you there's a similar study in diabetes, which you'd think, how does that respond to empathy? But there's just a ton of shocking studies that show how profoundly our biomarkers themselves, the little measurements of levels in our blood of various chemicals and substances change based just on how people talk to us.
ELISE:
Yeah. And isn't it saying that it's our cultural instinct right now in the society that we live in to then say, oh, then that's really irrelevant. Or the placebo is irrelevant or that doesn't count, when in fact it's like, wow, look at how powerful, the power of relating, the power of care, and the power of feeling seen. Yeah. And validated it's remarkably powerful. And yet, because it's really, it's really wild.
MEGHAN:
It's wild. And I actually, one of the doctors I currently see, I chose partly, but because at one point he said to me, it's possible that how I'm treating you is just, the reason you're getting a benefit is just through placebo. He's like, but that's fine if it's through placebo. And I was like, right, exactly. Like is not the only danger of placebo is if you're giving someone something damaging to their body. And in fact it's something else. And in fact, what I would say about this study is it should tell us we can do a lot with something that's completely not damaging, which is just our words. Right. You don't have to give other stuff.
ELISE:
Yeah. I think it's so interesting. And I hope that we start to reframe the power of placebo, which is a very difficult standard to beat in studies. And that we start to actually explore what the factors are that drive that rather than the dismissal that it so typically receives. I think it's one of the most fascinating cultural quandaries within health. And I loved your book because just reading about the various protocols that you pursued in the name of health and the spectrum, which I think is right. You know, I think that any sort of quote side of medicine that would reject, you know, I think it's wrong to reject Eastern medicine. It's wrong to reject Western medicine, the two work so much more powerfully together. But I loved your explanation if you don't mind if I read again, where you write, “The discourse of natural medicine, of alternative and integrative medicine of wellness culture draws on our nostalgia for an imagined past. It is a discourse not only of optimization, but of regret, though this aspect is rarely acknowledged. Regret that we cannot undo what we have done to the polluted world, that we cannot have the best of science without having the worst of it, that we live atomized, exhausted, late capitalist lives running from here to there, eyes on our phone. The natural approach appeals because it trades on notions of purity as a way of restoring health. It promises to return us to a time when our bodies were untainted by modernity, technology, and pollution, a path to a prelaparsian physical self, capable of almost anything, including self-healing.” That's a beautiful sentiment. And it's also so complicated, you know, to espouse any view in its entirety and reject…we need a much more democratic approach to health and a much more, like let's see what works and then embrace it.
MEGHAN:
Yeah, I think, especially with these, the category, I'm trying to really talk about here, which are these diseases that are driven by immune mediation because the wild thing about our immune system, I mean, in all these other systems too, but is how much, you know, it's a base, a reactive system, right? It reacts to the environment, it reacts to other things, it reacts to your nervous system. It reacts to stress. It goes up and down according to stressors in your life. And so it's also highly personal, right? Your immune system is a record of your life, your encounters with pathogens, with chemicals, with stress. And so we do need, I think going back to a great question about redesigning healthcare, you know, I'd really love to see an evidence based medicine that takes the best of Western medicine, the best of these other modalities, and is really committed to the complicated and hard work of helping people make lifestyle modifications.
Because one of the things that I found, and a lot of the people I interviewed for my book found, was that they had to make some modifications to their life to get somewhat better from these chronic illnesses. And by the way, better means kind of living with them better. And often, you know, there's things like food sensitivities because of food sensitivity is immune based in nature, right? So if your immune system having all these problems, you often end up with like, I can't eat eggs randomly. Some researchers I talked to who are working on long-COVID said a feature of a lot of long-COVID patients is that they have food sensitivities that are new, that are triggered by the incredible immune response to the virus they think. But it's a really underexplored area. And then even when we know a lot about it, it's going to resist a sort of one size fits all stamp, right.
It's gonna require medical care where you have to really talk to patients and I needed to learn to sleep better. Sometimes like, I love to stay up late at night writing and I just can't do that anymore. So we really need that more holistic in the true sense of the word, dimensional approach to our bodies because you know, it's funny what you were saying before about the placebo. It's like the poet and me kept being like right. Of course care matters. Of course warmth matters. Of course sleep matters. But you're almost trained out of thinking that way as a 20th-century person.
ELISE:
Well it's very materialist, you know, it's a very, it it's and I think we're moving into a new era that can sort of imagine that there are other factors that we don't yet understand, or don't have language for. We can't quite measure them yet, but I’m confident we will be able to. And I think too with women, you know, and certainly I think a lot of doctors are attuned to that, but the factors were more complex hormonally. But with autoimmune, you know, a lot of the doctors that I've talked to about this autoimmune epidemic in women, and again, it's not fully understood, and there are obviously a lot of external factors. Like we live in a patriarchy, and all of these things as well, but also we are, as we are attuned to accept immune-modulation, you know, by virtue of pregnancy, right? Like we grow other beings in our bodies, and our bodies know not to attack them. And so there's clearly, you know, one of my best friends has MS, and she feels her best when she's pregnant because the immune system is taken down. But that feels so under-researched and not well understood, um, in a way that you would hope resources would be funneled faster.
MEGHAN:
It's really astonishing how little we understand about the hormonal piece of autoimmune disease. So what do we know? We know immune autoimmune diseases are rising in the West. Part of it through better diagnostics, right. We can diagnose them better. But part of it, according to pretty much every researcher I talk to is clearly something environmental changing. How our very delicate balance of, you know, the immune system is working, and leading it more often to attack our own bodies. But as you say, we know things, there are studies showing, you know, like right. Women with MS, do a lot better in pregnancy. We know that certain key hormonal stages lead to more autoimmune disease, but it's still, so it's like the tip of the iceberg, and meanwhile, close to 50 million women or people I should say in America live with autoimmune disease. About 80% of them are women.
ELISE:
Yeah. Yeah. I don't know about, you know, endocrine disrupting chemicals and their impact on autoimmunity specifically, but there's also, you know, it's like, as you mentioned, this, the environmental toxins that have been unleashed in our environment and we still don't understand. I mean, there are terrifying and fascinating studies. Mike Skinner, University of Washington, Bruce Bloomberg writes about obesogenic chemicals, DDT, and what they see show up in, in mice, in future generations in terms of turning on obesity gene. We know that there are dementogens. And I have to imagine that there's will be breakthroughs and understanding how environmental chemicals are igniting. And it just feels obvious, I guess, but I think know everyone doesn't know how to contain it and, or it's very scary obviously.
MEGHAN:
And there's not a lot of money to study it, right. Because they benefit anyone. But the, the journalist Donna Jackson Nakazawa, who's a really good book about autoimmune disease, uses the term autogenic chemicals is a lot of what her book is about. And they have found a couple, they have certainly isolated, a few compounds because the other challenge, you one to show that that compound triggers autoimmune disease as opposed to the 400 others that are in our breast milk and body, you know, so sad, but you know, when they've been able to isolate them, they're seeing tons of autogenic effects. So I think if we think about the revolution and understanding carcinogenic chemicals, we're still a little bit behind and the curve and recognizing the huge advents of autogenic.
ELISE:
And even, you know, with obesogenic ones with mice, it's typically shows up in, I think the second generation or third generation. So it's a lot of these impacts are from probably the fifties, probably the sixties. It's very complex, but all the more reason to acknowledge it is real. And so we can bring some, we can end the “ethical loneliness.” I loved that phrase, that Jill Stauffer phrase, which is the injustice of not being heard for all these women. And then instead of pretending like it doesn't exist, can we not turn into it? And find some system, you know, the quarterbacking of healthcare and the coalescing of records, and it's funny. You know, there's so much unhappiness with Google, right? And this idea that people are trying to decipher medical studies and research. And yet at the same time, it's like culturally is that connective tissue that translates research into terms that plebes can understand. And people have to advocate for themselves because you cannot find that within the system. And that has to change, I think, also for medicine and science to reclaim that sole authority space, if that makes sense.
MEGHAN:
Yeah. And I think it goes back to the need for centers for the care of these kinds of diseases. Because one thing I've heard over and over from people I interviewed was that, you know, especially if you have something like chronic fatigue syndrome or you get Lyme Disease, you get treated and you don't get better. I mean, medicine basically has very little to say to you in those cases, but those people are really, really sick. Right. And so of course you turn to Google, your instinct is to survive. And yeah, one thing I would say is that the more we actually recognize these as problems and creates centers for care, the less misinformation that will be out there, the more people will be able to get care. I mean, I think, look, Google's here to stay. I've talked to a lot of doctors about this.
They hate it. My doctor, I have a great knee doctor cause I had hurt my knee and she's like, I get calls in the middle of the night and I'm like, yeah, but it's, people's bodies. They're freaking out. Like you have to understand that reality. And I think the first step is to establish that openly and that us and sort of figure out from there, where do you go? But you can't just be like, don't use Google. I interviewed the former head of the Permanente Federation. He was like, one of the problems is too that, you know, if you have one of these less well understood diseases, and you're on Google, and you're reading medical studies. Yeah, there might be a lot you don't understand about it, but you might actually end up knowing more than the doctor does about your condition because they're a GP, you know, keeping up with everything. And he said, and that's a really uncomfortable position for everyone cuz a, you might have a lot of misunderstanding of what you've read and the doctor wants to feel like the expert. And so his point was, we just have to get beyond that moment and figure out, yes. How does, how does the doctor then say, okay, I'm not an expert in this. I'm gonna help you find an expert who can communicate this better.
ELISE:
Yes. I mean, we started the conversation talking about vulnerability, and there's so much shame and shaming wrapped up in medical care, or this feeling of powerlessness or impatience, or feeling threatened, you know, by a well-informed patient or pushy patient. But that's the reality of getting good medical care. Unfortunately for most people, is the insistence on asking questions. We need a new model where doctors can say, I don't know, I don't know. And I feel you, and I wish I knew, and I will help you. And we also need, you know, the less shaming of people around, you know, their bodies is a totally different conversation, but it's like, I'm putting off my annual because I don't wanna be weighed. There's so many factors in medicine that are like deeply shaming. I don't want to go and be told on either end of the spectrum don't do that, or don't do that. As long as it's not harmful or, and it feels helpful, you know. I love acupuncture. I'm gonna keep getting acupuncture. I love my OB GYN.
MEGHAN:
So, but there's that like, there's always that disconnect that we need to. We have, I think as a kind of cultural habit, I'm just generalizing here, but it's part of what I try to get at in that chapter about integrative medicine is that we just, we have this habit of going to extremes. I think temperamentally and experientially, I'm someone who found, you know, great help from certain aspects of conventional medicine. I mean, antibiotics really saved my life as I knew it, but acupuncture was absolutely crucial to my wellbeing. I think it helped my health tremendously. I love it. If you have kids, you know, it's somewhere calm where you get to be like the child in the womb. And herbs and acupuncture really helped with things that traditional medicine couldn't help me with like endometriosis and period pain. To me, there's a logic to people seeking out answers in things like herbs. And anyway, but we, we don't too often, these things are seen as being opposed as opposed to part of the same system of searching for genuine answers. One reason is that we don't have great systems for evaluating alternative medicine. It's really hard, if it's really person personalized, how do you study it in a kind of, you know, you know, randomized controlled trial, you can't really do that. But I think the solution here too is not to just reflexively dismiss, but to try to carve out a kind of more authentic conversation about what really helps people who are chronically ill live their lives.
You know, a model for this for me is palliative care, right? We didn't used to have palliative care. We used to just like throw medicine at people until they died. And basically it was a concept invented by various people, including someone I interview in my book named Susan Block, where they said, you know, if people are dying anyway, why don't we ask them what they really want from their last months? And that changed how we help people die and how we treat them. And I think we need a similar revolution in chronic illness care where we say, okay, we can't get rid of your illness, or we don't know exactly what it is. How can we help you? What are your goals? How do you wanna live? What's what's the symptom that's the most troublesome. No one ever said that to me. Any of those things.
So that's part of what I'm hoping we can start talking about in this country.
ELISE:
No, and palliative care, you know, obviously hospice is part of palliative care, but palliative care is just such a much bigger and more important conversation about selfhood and the qualities that matter, and people can work with palliative care for years, you know, it doesn't even have up and, and it's not even an end-of-life intervention. It what you're speaking to of. We will never remove, we will never be without some of these symptoms, but let's figure out how to, how to eliminate or alleviate the suffering.
You talk at the end about finding that so many people wanted to reassure you of the good things that this experience brought with it. Um, and that cultural narrative where that we, I am completely, I am guilty of this as well of like, everything has a lesson and there's always an upside and the silver lining, um, this, you quote unquote, “A narrative in which sickness is bearable because it transforms the sufferer.” What is your response to that?
MEGHAN:
Yeah. I mean, look, first of all, you know, I did write this book to try to wrest some meaning from my illness, right? So I certainly think that the impulse to cope and find meaning and, and reframe is a really important one in many aspects of our lives. The specific point I really wanna make here though, is that we kind of exclusively do that, right? We don't, because we're not pausing socially, personally, to recognize the reality of these invisible illnesses, we're going right from the silencing of the illness to the reassurance that it's all gonna be okay. And I've done it too. Absolutely. Before I got sick. And probably even since I got sick, there's this human impulse to make other people feel better, but the work I think we have to do here first, on our own and as a culture is to stop and say, I'm so sorry.
I see that you're suffering, right. We have this epidemic of long-COVID hitting, and we just need to stop. We're all arguing about masks and going back to work, we just have to stop and say, I'm so sorry that you're suffering. You got this virus and you just haven't gotten better. And no one knows exactly what's wrong. It's really powerful to witness someone suffering, it’s also really hard to do. But I do think it's our moral and ethical obligation to do that. And then let the conversation go from there where it might go.
ELISE:
What's your best advice for someone who is trying to find a diagnosis or in the middle of navigating?
MEGHAN:
I think the most important thing is to keep trying, and to believe yourself. To believe in your own intuition, to trust yourself. I think I spent far too long dismissing my own symptoms because doctors said, we can't find anything wrong. And I internalized the idea that something was wrong with me, not my body. My head as it were. The other thing is that, you know, having gone through for 20 years, I can say, there are people out there who care about these illnesses who can help you. There are centers, there are acupuncturists, there's all kinds of help. And so it's finding those people, which is really, really tough to do. And it's kind of like a marathon. And because it's a marathon, sometimes you have to pause and let yourself rest. I couldn't always search for answers. There were times I just had to pause, try to get by. But yeah, the more you can keep trying until you find that real partner in your health, the better,
ELISE:
Well, if you couldn’t tell, Meghan O’Rourke is a beautiful writer, and her book, for anyone who finds themselves on a similar path, or is curious about navigating the medical system, is a really helpful guide and resource. And I think anyone who finds themselves in this particular quandary, which unfortunately a lot of people, and a lot of women, it’s a really helpful guide. But it also speaks to this much larger issue, which is this culture of care that’s required for healing, that fact that we’re all so connected, that empathy is essential and needs to be integrated rather than dismissed as not science. We need to help feel a sense of wholeness, or at least the sense of feeling understood on their path to healing. As she writes, “But to be ill in America today is to be brought up against the pathology of a culture that denies this fact. In the worst moments of my illness, I was alone because of the ways that we have allowed ourselves to believe that the self, rather than community, must do all the healing.” And as we contemplate this pandemic, which will keep going, and long-COVID, and all these various epidemics, I think it’s incumbent on all of us that even if we are not afflicted, it’s our job to help others heal.