“It's just anxiety”, “It's nothing”, “It's probably just your hormones”… These are just a few of the remarks that many women with ‘invisible illnesses' hear from their doctors, and even their friends and family.
Living with an invisible illnesses like long-COVID, post-Lyme syndrome, ME/CFS, Hashimoto's, and even high-functioning anxiety or depression, means having symptoms that may not be obvious to others, even though you're suffering, and for which conventional medicine may have little to offer by way of diagnosis, let alone treatment.
Join me for a rich and important conversation on the topic of invisible illness, redefining identity, and finding solutions where you can, with my guest, Meghan O'Rourke, author of the New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness, also a finalist for the 2022 National Book Award in Nonfiction!
In this episode, we talk about the disproportionate effects of chronic and invisible illness on women, the risks of medical gaslighting, the much needed bridge between conventional and alternative medicine, and what it means to be living on the edge of medical knowledge.
Meghan and I discuss:
- Her experience and story of living with an invisible illness, searching for support, and the internalized gaslighting she experienced from not being seen by her medical providers
- The importance of seeing and validating the experience of people living with a chronic and invisible illness and making the Invisible Kingdom visible
- The medical gender gap and how gender plays a role in receiving a diagnosis and being believed
- How long covid is potentially changing the conversation around invisible illness
- Why it's so important to deeply trust your body and learn to discern what is — and isn't — working for you from medical interactions to conventional and alternative therapies
- Non-negotiables for living well and navigating work + motherhood, with a chronic condition
- The need for a third path in medicine that bridges conventional and alternative medicine
- Meghan's advice on how we can advocate for ourselves to get the labs and support we need from our medical providers and so much more
If you or someone you live is living with a chronic, invisible illness, I hope this episode offers you support, comfort, and compassion – and removes invisibility so that anyone struggling alone feels seen and heard.
To LISTEN, use the player above or go to where you listen to podcasts, and please SHARE this episode widely so we can all better understanding chronic, invisible illness and support those who are facing them.
This conversation has been edited for clarity and length.
Aviva: My guest today, Megan O'Rourke, is the author of the New York Times bestseller, the Invisible Kingdom: Re-Imagining Chronic Illness, which was a finalist for the 2022 National Book Award in non-fiction. She is also the author of the memoir, The Long Goodbye, a book about grieving the loss of her mother as well as the poetry collection's sun in days once and half life. Her writing has appeared in the Atlantic Monthly, the New Yorker and the New York Times and more. She resides in New Haven where she teaches at Yale University.
In her twenties, Megan began suffering from mysterious symptoms ranging from crushing fatigue to rashes to strange neurologic symptoms. The search for a diagnosis which consumed a decade of her personal and work life led her from doctor's office to doctor's office where she was routinely dismissed by physicians who had no answers or if any it was to psychologize her and eventually to the world of alternatives and integrative therapies where she did find some lifestyle answers and understanding amongst others who similarly both struggled with a wide range of strange symptoms and who too often had also been marginalized by conventional medicine left to figure it out on their own.
But this world had its own limitations, questionable practices, unrealistic promises, and its own shadow side of psychologizing and blaming the patient. Her experiences led her to not only be profoundly disturbed by the American medical system, but to have to redefine her beliefs about illness, healing and identity as she faced living with chronic disease, the loneliness of living with invisible illness. Those symptoms which may not be obvious to others, though you're suffering and for which conventional medicine often has little to offer at least yet by way of diagnosis, let alone treatment, which she describes poetically the invisible kingdom. Her book written through the eyes of one, struggling with invisible illness and with the rigor of a research journalist is one of radical compassion and empathy and is a healing bomb for anyone struggling with chronic disease or who loves someone with chronic disease, which given the startling statistics about the number of people suffering with Long COVID only makes this book all the more important and relevant right now.
Megan, thank you for being with me today and taking the time to share your story.
Meghan: Oh, thank you for having me and thank you for that just incredibly beautiful introduction. It's everything I hoped the book would be and everything I feared it might not be, so it's really moving to hear your words.
Aviva: It's a joy. You wrote in the introduction to the book that you got sick the way Hemingway says “you go broke” – gradually and then suddenly. You describe yourself at one point as almost entirely unrecognizable to yourself. For listeners who haven't read your book yet, can you describe your symptoms, their progression, and also how you experienced and ultimately coped with this new reality and this self-unrecognizability?
Meghan: I will try to give the short version to that question because of course the book is a long version, but the short version is that I became invisibly ill or mysteriously ill in my early twenties right after graduating from college. I was 21 and I had had strange health symptoms my whole life. One question I often ask myself in retrospect is when did this begin? But certainly when I was 21 starting my first job with all the excitement of a young person setting out in the world, one day I was walking to work and I was beset by this sense of electrical shocks flickering all over my body, extremely severe, extremely painful, so much so that I had to rub my arms and legs or else they would just start spasming actually and twitching. And that heralded the beginning of a rollercoaster of ups and downs in my health and of symptoms that ranged widely, and included subjective ones that are hard to measure, such as fatigue or brain fog, pain – but also some pretty concrete ones like hives that I experienced every day, wrenching night sweats, I'd have to change my clothes in the middle of the night.
What happened was that I started seeing doctors and no one could find anything exactly wrong. In retrospect, one of them said, actually you did have a positive ANA, which can be a marker for autoimmune disease. And she was like, maybe in retrospect we should have realized. But I think there was this sort of instinct or rush or unconscious pull to see my problems as being manifestations of anxiety or hypochondria or just a sort of neurotic young woman. And I internalized that for really a decade and it took about 10 years for me to start actively seeking more help. I haven't said this often, but I mentioned it in the book, there was this clarifying moment where my mother who had stage four cancer and was on her seventh session of chemo. I was staying with her in Connecticut and one morning she woke up and was like, let's go take a walk. And she had more energy than I did. I was 31 and I was not doing chemo and I did not have cancer. I was like, something is wrong, right?
Aviva: You knew something was wrong and yet externally you probably looked fine to all the world.
Aviva: I think a lot about this term, invisible illness. It has a lot of nuances to it and I have a lot of patients who come to me because of that going from doctor to doctor, and we know the more often you go to the next doctor, the more next doctor is likely to consider you neurotic, and the more next doctor and the next doctor and the next doctor start to add on these psychological diagnoses, this is well-documented in medicine. So you've got this situation where your symptoms aren't seen by others and your symptoms aren't seen by doctors. Many women who talk to me in this situation, and it sounds like you went through some of this, kind of become invisible in their own lives because they just don't have the energy to show up and be out there in the world anymore. So there are all these nuances that I think about when I think about invisible illness. And clearly you have given some thought to this word because it's the title of your book, the Invisible Kingdom. Can you talk about this experience of this invisibility and how you chose this title?
Meghan: Yeah, I love everything you said. The invisibility really is so complicated, isn't it? There's the invisibility of your symptoms or the so-called invisibility of your symptoms, which is to say that again, often women with autoimmune diseases have post-treatment Lyme disease syndrome, Long COVID. If you're experiencing problems with your autonomic nervous system, they're not evident to others. But your life can be so challenging because you're having trouble temperature regulating and generating enough blood to your brain when you stand up. We know that there's fatigue and brain fog.
So the symptoms were invisible, and then when I went to doctors, whatever was wrong wasn't showing up on tests. And what became extremely clear writing this book, and as you well know, modern medicine is built on measurement. If medicine can't measure it, your condition is rendered invisibile simply because it doesn't fit into the known tools we have for measuring. If you think about it logically, just because something doesn't show up on tests doesn't mean that nothing is there. It may mean you don't have the right tests.
Aviva: We're not using the right measurements. I always say to my patients, they'll go to their doctor and they have every symptom of a thyroid problem. And I'm also really careful not to over-diagnose thyroid problems because this happens in the integrative-functional world all the time. But I'll say to my patient, so the cutoff of the lab is 4.8, you have all the symptoms and your lab results show 4.6. It's a little bit like water isn't boiling technically until it's 212, but at 210 something's going on, right?
Meghan: At one point I read about the statistics of the range and the range is designed that if you actually know the statistics scientifically, that statistically people will fall outside the range. And yet no doctor ever talked to me that way. No doctor ever said, well statistically there are people who fall outside the range and you have all the symptoms and you're close to the range, so therefore that should be a clinical diagnosis. But the more profound invisibility you're talking about is that one of not showing up. And that definitely happened to me where I was sick for so long that I started to internalize the idea that I was just this sort of anxious, overwhelmed person who maybe just was bad at living. Either I over-committed or just everyone else sort of soldiered on and I didn't. I didn't know if everyone felt this way.
So the invisibility gets very complicated because it renders you invisible to yourself in some way. I mean, one of the reasons recognition is so important is that we're social creatures and the judgments of others deeply shape not only our experience of disease, but our experience of our selfhood. And one of the deepest concerns I have is that when we don't recognize these invisible illnesses and we don't make room for them and we don't take them seriously, we render invisible whole people, whole parts of selves, whole possibilities for future treatment. So the invisible kingdom, it was the last part of the book to write. I had a different title that I'd never loved and I was thinking about it and it wasn't satisfying. Then I was talking to my husband, he was like, there's something kingdom. And I was like, oh my God, it's the invisible kingdom.
Because the book was written out of my sense that I was incredibly lonely in this experience. I'm sure many of your listeners have felt lonely, but I remember clearly this moment where I had been patronized and met with kind of coldness by a new doctor. And I exited just like brokenhearted, weeping, leaning on someone's dusty car in the street and suddenly thinking, if this is happening to me, this is happening to millions of other people. And that was the genesis of the book – it was just that moment. Indeed, starting to research, I interviewed about a hundred people. And then the research shows us, yes, then there is an invisible kingdom out there. And hopefully together we can be visible and change the way these conditions are thought about and talked about and treated.
Aviva: So not to be cheeky, but every time I look at the invisible kingdom, my brain replaces it with the invisible queendom.
Meghan: I love it. That's an even better title.
Aviva: Only because it's not just that I mostly take care of women and children, it's that statistically these types of symptoms – the fatigue, the brain fog, the pain, for thyroid the weight gain, for many autoimmune conditions the depression, these are symptoms that historically have been chalked up to names like hysteria and neurosis and have had all kinds of cures over hundreds of years and are primarily symptoms that show up in women, which historically we know from medical gaslighting and medical misogyny are more likely to be dismissed.
You use this term. It is the summary of what I say to my patients all the time when they come to me looking for answers. And I'll say, I'm going to do everything that I can to help you find an answer. And I believe you – I believe that all these symptoms are really happening for you. But what I know about reliable medical science and even some of the fringe testing that's available is we still might not find an answer. And you say “living at the edge of medical knowledge.” So I want to swing back to that.
Before we get there, do you feel like it wasn't just the edge of medical knowledge that prevented you from getting a diagnosis? Do you feel like there was anything about the fact that you are female and that there was this, you used the word patronizing, how do you feel gender played into all of this and into how your symptoms were perceived?
Meghan: It's impossible for me to disentangle this from my gender. It just is, and in a number of ways, one of the ways being the ways in which I gaslit myself. I just wish I could go back in time and say, listen to yourself. I get asked all the time, what should I do? What should I tell someone? Listen to yourself.
I had been acculturated and raised in a patriarchal culture that taught me not to listen to my own needs. I wish for everyone that we could listen to our own needs. That was number one. And your own instincts. There's that kind of broader acculturation, which I was a young woman with vaguely disordered eating who would be like, well, I just ate some pizza and it's all my fault. That's why I feel sick today. Cause I did feel sick anytime I ate pizza.
I had all these associations, but then when I went to doctor's offices, I was entering offices in which the legacy of hysteria was as present as the stainless steel exam table or whatever it was. That legacy doesn't mean that we're all reading Freud and thinking about Freud or reading SW Mitchell and saying, oh, these things are the disease of nervous exhaustion. But it does mean that we have more than a hundred years of history in which medicine has been taught to think of women's testimony about their own vague, so-called vague and subjective symptoms, as particularly unreliable, as often evidence of a hidden trauma or hidden truth that they're unwilling to admit. And there's even a moment in Freud where he sort of says something like, the more they insist – I'm paraphrasing broadly – but it's like the more they insist, the more you know it's not true.
There's this kind of gap in terms of being willing to listen to women and then we just simply do not know enough about women's bodies. And we should say too, transgender bodies and what happens to bodies after medical transition because we don't know enough about that either.
You have this combination of distrust of women as reliable testifiers on their own behalf, plus a just basic lack of knowledge about how we metabolize things. Why is autoimmune disease on the rise and why is it mostly women? There are reasons, but why. We have hints but we don't have conclusive evidence exactly. So absolutely gender is a huge driver of the silencing and the making invisible. And as you say it is, it's not wrong to say that there is kind of an epidemic of medical gaslighting when it comes to these kinds of illnesses.
Aviva: Absolutely. Even in medical school, so what, 17, 18 years ago – so I was a home birth midwife and doing out of the box things before for 20 years – we would have the patient who came into the emergency department with vague symptoms and I would actually watch an attending roll their eyes. Or you would hear the little acronyms like, oh, she's a PIA (a pain in the ass) Or it would be “that kind of patient” with air quotes.
Statistically conditions like what we've called encephalomyelitis, what we've called chronic fatigue syndrome, fibromyalgia. Even though these are now well established medical conditions with etiologies and diagnostics, even if some of those are clinical or symptom-based, some studies show that 70% of physicians in some hospitals, medical centers don't believe that these are real.
Meghan: Yeah. And I know that tickborne illness and Lyme disease is a really contested subject. The CDC itself now acknowledges that in, I think up to 20% of patients, there's ongoing symptoms after an infection for reasons it doesn't talk about or it's not sure that that's because of persistent infection. But they themselves are saying this is real. And I talked to doctors when I was reporting on Lyme disease who were like, that's just bullshit. This isn't real.
Aviva: And not only that, the CDC, I think it was last year or the year before, 2021 or 2022, said that they had underestimated the number of people with tickborne disease by at least tenfold. So where they thought it was 30,000, it's probably more like 300,000.
Meghan: I think they're headed in the right direction there. One of the questions I take up in the book is, well why is that resistance there? Why in a medical system – and medicine is about helping people – why when people go in need, are they met with – especially women – “well, nothing's wrong with you.” And I always like to offer an analogy which shows us, cause we've all gotten used to it, but just think about how strange it is. Imagine going to a restaurant, a really nice restaurant, sitting down at the table and your waiter, you know, have your napkin. You start to drink your water and the waiter comes over and says, what would you like? And you say, well, I'm in the mood for a steak today. And 10 minutes later the waiter has consulted with the chef and comes back and says, the chef doesn't think you're hungry.
It's just so weird. Medicine is there to help us. Why is medicine so skeptical of us? We're the people it's supposed to help? Sure, hypochondria exists, but actually the idea that there's limits to medical knowledge and that some of us live at the edge of it – when we actually know that autoimmune disease affects X number of people and that there's a sort of slow and oncoming of it and we don't have great tests. I just don't understand why the rational doctor doesn't sit and think, oh, maybe this person has an autoimmune disease and I just can't see it yet.
Aviva: Yes. Studies show this, that as physicians were trained to know and have answers and when we don't, it creates this huge resistance and anxiety and it's easier to just psychologize the other person and give an answer than sort of admit lack of knowing and just say, I'm in this with you, I don't know yet, but we're going to figure this out. Or at least I'm on the journey with you even if we can't figure it out yet. And I'm here. Believe me, I'm not justifying, I'm just explaining – the incredible level of burnout that physicians are under has really affected physicians' personalities and the level of hostility, rage, and like in so many systems and cultures that tends to get taken out on the person perceived as most vulnerable – often women – in any culture women are the most likely to receive the abuse, lack of knowledge about testing and broader interpretations of testing. So doing a broader thyroid panel, always getting an ANA with a reflex. There are just things that can be done – getting an Epstein Barr virus panel. And then I think because some of these things have been done outside of medicine with citizen scientists, that's how I like to say it. People who are trying to find the answers to themselves. Sometimes things swinging so far in a non evidence-based direction that physicians develop this almost reflexive, reactive, knee-jerk skepticism. I've had patients who have come to my practice who've had their doctor say, when they ask about a thyroid test or they ask about something for an autoimmune condition or an herb or a supplement, “oh, where'd you get your degree, Dr. Google?”
And then as women, we feel unwell. So we're already exhausted. We have these bad experiences. We're taught not to make waves and speak up. And our mothers are sometimes still of the age saying, ‘honey, listen to the doctor.' It's complicated. So I love this I expression: living at the edge of medical knowledge. I think that for me as a physician, it's a beautiful term to be able to share. So thank you for that gift because I will really be using that more and more with my patients. It's how I explain it, but now I have that sentence.
Meghan: This describes it. Because I've spent years trying to be like, what's going on? And then I was finally like, no, I'm just at the edge of knowledge. It doesn't mean I'm making anything up.
Aviva: And for physicians they should look at that as an opportunity for curiosity.
So with your symptoms, you're coping to be a functioning human being. I'm imagining as for so many people with these unusual symptoms, you had some waxing and waning, sometimes you felt okay, sometimes you didn't. Better days, worse days. How did you write a book and have a deadline with all of that going on?
Meghan: I couldn't write the book until I was much better, a word I like to put in air quotes. So you can see, and I'm saying that so our listeners can hear, because I'm not better in the sense that I thought I would be when I first got sick. I'm not a totally well person. I'm a person with chronic illness. But I always like to let people know, I really could not have written this book when I was at my sickest. And in fact, it grew out of a piece I wrote for The New Yorker in 2013 during a kind of period of remission where I wrote at my sickest. I would've been able to write these sentences, but I would not have been able to make paragraphs of them.
Which is to say that I could have thoughts, I could put things down, but the brain fog and fatigue were so severe I couldn't do the synthesizing deep intellectual work that this book required. And I say that because I think it illustrates too how profound the impact of these diseases are like. Because they relapse and remit, because you look okay, people often think it can't be that bad. I think they think it's just being a little tired now and I want to say no, I couldn't do the things that I loved and that gave me meaning and that also brought in income. I just couldn't do them. That's how sick I was. It wasn't tiredness, it was cellular fatigue.
Aviva: Can you read that passage that we talked about earlier before we hopped on the interview – on page 48 – where you talk about this debilitating fatigue?
Meghan: Definitely. So I think one of the things that's hardest for all of us is that this word fatigue gets used. It's a kind of a lay word and it's a word we use to mean sleepy or tired from just a long day. And as anyone listening to this knows who experiences it, it's something altogether different. I was actually explaining it to my four-year old this morning as like if there's little furnaces in your body making energy, all of them suddenly went out. So walking down the street, you just didn't have that furnace to keep you going.
Aviva: I ask my patients, when you talk about fatigue, are you saying you have that feeling in your head and you want to put your head down? Is it the feeling like, I didn't get a good night's sleep, but a cup of coffee's going to make a difference? Or is it just bone-weary? Just that bone-weary and you're talking about that.
Meghan: And fuzziness in the head that sometimes it felt like coffee would help, but then the coffee never helped.
Aviva: Yeah. Not the best solution necessarily.
Oh, okay. So I'm going to read from a passage where I'm talking about the ways in which when you're chronically ill and you're searching for answers and you don't have recognition, part of what you're doing is impersonating the self you think others want you to be, the self the world wants you to be, the self you might want to be, right? So I write…
There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if no one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there? The hardest thing to convey to doctors or friends with the debilitating fatigue, which many other patients I knew experienced as well. Complaining of fatigue sounds like moral weakness. In New York City, tired is normal, but the fatigue of physical dysfunction I came to recognize is as different from normal sleep deprivation as COVID-19 is from the common cold.
It was not caused by needing sleep I thought, but by my body's cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self. It wasn't just that I suffered brain fog. It wasn't just the loss of self that sociologists talk about in connection with chronic illness in which everything you know about yourself disappears and you have to build a different life. Rather as I got sicker that winter, I no longer had the sense that I was a distinct person. On most days, I felt like a mechanism that moved arduously through the world simply trying to complete its tasks. Sitting upright at my father's birthday, dinner at a quiet restaurant required a huge act of will.
Normally absorption in a task, an immersive flow, can lead you to forget that you feel pain. But my fatigue made such a state impossible. I might at the nadir of my illness have been able to write any one of these sentences, but I would not have been able to make paragraphs of them. To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you're sick the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. “Farewell me, cherished me, now so hazy, so indistinct.” [Alphonse Daudet, a 19th century French novelist.] That was a line I now often thought of. My mental sensation of no longer being a person had a correlating physical symptom. My eyes no longer seemed like lenses onto the world.
They seemed rather to be distinct parts of my body as perceptible as fingers, oddly distant, protuberant, like old-fashioned spectacles. My face was a mask I was conscious of at all times. It made me feel categorically fraudulent. I could feel the fat in my cheeks and the weight of my bones as I spoke. I experienced a mounting anxiety. Everything was wrong and that wrongness was inside me, but I wasn't sure anymore who that me was or how to express what was happening. As Virginia Wolf testified in On Being Ill, “English, which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver and the headache. The nearest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind for her. But let a sufferer try to describe a pain in his head to adopt her and language at once runs dry.”
Aviva: People experience loss, unexpected adverse events in their lives that shift their lives, and also beautiful things that shift their lives, change their identity. I don't know why, but winning the lottery comes to mind, right? Things happen, both sides of the coin, but there's a start and stop to them and then there's a healing. With chronic illness have you redefined yourself as someone with chronic illness? Have you resisted defining yourself that way? How do you integrate that? This is something you have better days, worse days? Tell me what your recreation of your identity has been.
Meghan: Oh, it's such a good question. I do both. I have integrated, am integrating, working on integrating my identity as a chronic illness person and have resisted it. I think that the book, the Invisible Kingdom, it was a challenge to write because chronic illness resists tidy narratives. We like to tell stories in this country of radical overcoming of illness. Just do it. Whatever doesn't kill you makes you stronger. We like there to be a big outcome. And I was telling a story of this kind of messy, I got sick, I got better a little bit. I got sick again, I got a little better. I got sick again. I got COVID. I got sick in this way. One problem we all have is that the world doesn't know how to listen to that story. Not that we feel we don't know how to tell the story, but actually the world doesn't know how to listen to that story.
Aviva: Well there's kind of a perception too, right? If you complain to your friend once about something, fine, but you shouldn't keep coming back with the same story. Right?
Meghan: Exactly. So I was really interested in how do I make a story out of this? What's the story? And I'm getting to your question in a sense that what I realized was that the story was the story of my own trajectory from getting sick, getting online, Dr. Google, reading everything, joining patient groups which were instrumental to my getting a diagnosis and thinking, I'm going to get better. Just do it. I'm going to do everything. I'm going to do all the things and I'm going to be okay again. I'm going to be myself again.
Okay, life had other plans. That's not what happened. But what happened was that I learned to become a different person who lived with my illness. But I could only learn to do that once the world recognized the reality of my illness. Because before that, I spent all my energy trying to get the world to recognize the reality of my illness, all my energy trying to persuade my doctors this is real or my colleagues or my friends.
And so that's something that's I think really important when we think about chronic illness, identity and experience, is that the reason we need this invisible kingdom to become visible is that we need to have the dignity as patients of being able to focus on our own adjustment to our new reality without having to say in the first place, this is a reality. For me that meant I am a really driven person. Like so many of us, I like to do things really well. I like consistency, I like control. I've had to accept a near total loss of control. I've had to accept pretty intense physical limitations.
But once I've done that with adequate medical care, taking antibiotics for my tick-borne disease, getting the right diagnoses, getting the right PT, I now live this really full life. I have kids I didn't know I'd be able to have kids. I wrote my book, I travel, I can take long walks, in the right conditions – not too cold, not too warm. Which is a long way of saying I have to work every day to use my life hacks, as I put it, and not overextend myself. And then sometimes out of nowhere, a really bad flare comes. This happened a couple months ago and I then have to resist the urge to blame myself. Maybe some of you are more enlightened, but when this recent flare happened, I kept like, well, I did that wrong. And I stayed out too late at this one. I had a work dinner and I stayed out too late and then I didn't do this and didn't take my whatever…. I just was full of self-recrimination and I had to really stop and be like, you know, you got unlucky. There are sociopolitical reasons you have an autoimmune disease and you have neglected tick-borne illness.
Aviva: I think that's my biggest message when people ask me about my book Hormone Intelligence. I keep coming back to, yes, it's all about the hormones, but my biggest takeaways, you are not broken, and it's not your fault. There are really complex total ecosystem reasons.
Meghan: Right. And we're like the canaries in the coal mine.
Aviva: Exactly. So you mentioned a few things that I'm really curious about and want to explore a little further. You said that online groups were instrumental in your getting a diagnosis. And then you do mention that you were diagnosed ultimately with tick-borne disease. It's not always easy to get doctors to run those tests. I kind of want to encapsulate this into a bigger global question and storyline that we move into.
So many people who don't get answers in conventional medicine have to go far outside the box. And also I think it's really unfortunate. People who are already sick and exhausted now have to figure it out for themselves. That's a lot of work and a lot of trial and error. It can be a lot of expense, it can be a lot of sometimes people recommending not so safe things. So at what point did you say, okay, I've got to go down this kind of, I'm going to call it alternative medicine road. There are lots of names – integrative, functional medicine, all the things, wellness. And also did you have to override your rigorous journalistic mind to go down that road?
Meghan: Yeah, definitely. Since I had basically been sick since my twenties – but in this self-gaslighting where I was like, it's just on my job to be a better human. I then had a big downturn when I was about 32. Interestingly, right after my mother died, which is something I think about a lot, I caught a virus the day she died or it manifested the day she died. And I just never got better. And I was going to doctor after doctor. Interestingly, my insurance had changed. That wasn’t really talked about. So my longtime GP, who had been pretty great actually, I couldn't see her anymore. And I saw this man and he was like, I think you're just tired because you get your period. And I was like, well, no. I've always had my period. I've never felt like I'm dying before. So I was like, I got to do something.
I just started a journalist asking around, asking friends in New York, what should I do? One friend recommended this amazing conventional doctor at Weil Cornell who saw me, and she was the one who was like, I highly suspect you have an autoimmune disease. She gave me the diagnosis of autoimmune thyroiditis and she is incredible and open-minded. And she said, some patients find they do better when they're not on wheat or gluten. The evidence isn't clear yet, but I'm giving that to you. And that led me to Google and patient groups. And pretty much with that diagnosis I started reading. What I really quickly learned is that even though she'd framed it as an autoimmune problem, we were still talking about it mostly as a thyroid problem. And my reading was leading me to think, oh wow, actually this might be a systemic problem and it might explain other things that are going on, like my bad digestion, my headaches, my joint pain. Maybe autoimmune disease is a kind of unifying, and microbiome disorders is a kind of unifying theory here.
That led me to alternative medicine. I think one thing I like to always say is, look, in my view, both conventional medicine and alternative medicine/integrative medicine have their downsides. And even conventional medicine has its kind of quacks – the people who just have to make the money. People who will just do a C-section because it's easier and not because it's better for your body. Let's not forget that we intervene when we don't need to. And that is a problem, a non evidence-based approach that conventional medicine definitely takes. But what conventional medicine does have is the idea of evidence-based medicine. And where I think it's risky with alternative medicine is that we're not working in that same territory because most people are trying to help people at the edges of medical knowledge. The great tragedy here is that all of the work is put on the patient in terms of discerning what is trustworthy and what is not.
So I've thought a lot about this. We could talk about it for an hour, but basically what I came to is we need a system in which conventional medicine and alternative medicine are talking to each other more. And there's some kind of national board, and there is a way in which we rate, we need a rating system for what interventions are the least risky to the most risky, so that patients can be informed and say acupuncture, not very risky, possibly beneficial – in my case it was – versus… I did some pretty risky treatments. I think if we stopped arguing about the relative and had more of a holistic conversation on a national level about there are things we don't understand about the body's response to care and empathy and being treated as a whole that are really, really important and have to do with individualized care that can't easily be replicated in those randomized controlled studies, we could start to get somewhere more productive.
Aviva: I'm a hundred percent with you. I feel like I call it the third path.
Yeah, the third path.
It's like we know that there are things that we need from conventional medicine, not just for acute urgent things, but for chronic things. We know that the wellness model of care and looking at all of our ecosystem and our food and our stress level, all those things are important. There is a lot that could be done with the evidence that we do have in conventional medicine. Simple thyroid testing, simple EBV testing, Lyme testing, that isn't being used. And I think the tricky part with some of the not conventional therapies is that we don't know what is safe and isn't safe all the time because the research isn't there. So it's so marginalized, but I couldn't agree with you more. This conversation of what we can learn from each other is so important.
It’s really important for chronic illness care. And I think it's actually another way in which we're neglecting chronic illness care. Because in the book I talk about this, and I'm sure you know this, but I was fascinated as I did research to find out how many studies over and over in different kinds of chronic illnesses showed that having an empathetic doctor did as much to help the body's function for the patient as the most powerful medicines we have. So like in IBS an empathetic doctor was as effective as the best medication we have. So there's something, not to get too mystical about it all, but there's something about our bodies that the biology is social. Our biology responds to… we know it responds to trauma and stress, so why wouldn't it respond also potentially to warmth and joy and empathy. So anyway, I'm really fascinated by this area of research and hope that a lot more gets done and that we sort of shift to thinking about chronic illness care as including alternative medicine or practitioners who can help with the lifestyle changes that we know can really help.
Aviva: You mentioned a few things that I'd love to circle back to also. So in your opinion what is the balance, if you will, between, okay, yes, we know that certain foods for certain people, may be triggers versus, oh shit, I ate that and this is why I have this flare. I teach in the intimate partner violence class at Yale – it’s for the medical school – and the data on the trauma of intimate partner violence leading to autoimmune disease, chronic migraines, joint pain, sleep problems, actual measurable physical diseases is significant. So we also know that trauma, stress, all these things can contribute or cause. And yet there is that tendency to psychologize. So what's the middle place where we can hold both things as true without blaming the patient, without becoming nuts about everything you put in your mouth so that life doesn't become unpleasant or everything you do or think, how do you walk that balance?
Meghan: As I talk about in the book, there was definitely this period where I was in that state of everything I'm exposed to or eat is potentially harming me. And I was really focused on it, which is one reason it took me a while to realize that I also had a tick-borne illness, by the way. So I think what that taught me and what I think about daily is that when we live with these complex chronic illnesses, we have to stay alert to the depth of the complexity. And that when we pin too much on any one thing, we usually are going to end up telling ourselves a kind of reductive story about cause and effect. And that's been really liberating and helpful for me because I've had to truly lean into uncertainty.
I talk in the book about this great quote from the poet, John Keats, the 19th century poet, where he had watched his family members die of tuberculosis. His brother would soon die, he would soon die. And he's writing to his brother and he says… he's trying to think about what makes a great artist and what makes a merely good artist. And he says, I think it's his quality of what he calls negative capability, which is not irritably reaching after fact and reason. And I thought, oh wow. Of course. It takes a poet who's sick to articulate this. Because what he's saying is that to actually be present for the dimensionality of human life and to be able to write or reflect it, you have to allow radical uncertainty into your life. And you have to let go of control.
So how do we balance that with, if I do control things, I feel a little better? I think that's a dynamic. It's not an answer. Control can't be the answer. It's too static. So it has to be this searching for a dynamic in every day between control and going with the flow, between rest and the things that bring you joy. That's how I think about it every day, I'm going to spend energy, I'm going to need to conserve energy. I'm going to need to control, I'm going to need to go with the flow. And that changes for me daily, depending on if I'm in a flare or if I'm doing well.
Aviva: How did you reach a point for yourself of truly, deeply trusting your own body-knowing? Because even in wellness, it can be like this diet, these supplements, and you can feel like you have to do all of it, but if you actually stop… it doesn't always make a difference for that person as an individual. So how did you also discern which things were and weren't working for you, both conventionally and from outside the box?
Meghan: That's a great question. I think the frustrating answer is it takes a lot of time and it's just the pace of knowing, acquiring knowledge is slow. And so it really took me years. And trust me, there were months where I was like, I need the answer now. And it changes. So I think I was lucky and that there were a couple really clear things. It was very clear that gluten made me very sick, and it just became not worth it. And so I think once you find one of those big pieces, it starts to help you identify the smaller pieces. It took me years though to realize that eggs also made me sick. For example, I kept thinking I was having a Lyme flare, but it was just that I had started eating eggs again. So I think it's patience and keeping a really good journal and diary and just knowing it's not going to be perfect. And if you can figure out some stuff also. I don't know if people will resonate, but I found over time as I did that, that I started having a kind of intuition. It’s going to sound really weird. it's true.
I would have an intuition that certain supplements were good for me. Cause I would almost start craving those. I would be taking 20 supplements and I'd be like, Ooh, I really want to take that curcumin today. Or I really want to take the glutathione. And glutathione and curcumin are what I still take. And those I think for me are really, really helpful. Doesn't mean I'm taking all the other things I should take, but I kind of just have this feeling that these help me.
Aviva: For those listening who aren't familiar with them, they're anti-inflammatory. Do you have any non-negotiables for living that you're just like, these are things that I won't not do or won't do?
Meghan: I don't eat gluten ever. Just not worth it. I used to be an avid runner. I just can't anymore. I will treat myself occasionally to a “run.” It's like I'll run three blocks and be like, Woohoo, I did it. I really prioritize sleep. And I am really careful about if a friend is sick I don't see them because viruses knock me sideways for a month or two, even mild ones now. My kids are constantly sick. So I've had to just be flexible. They're going to get sick. They're kids. I just have to plan less. And I don't handle the cold well. So it was really hard in the pandemic. Speaking of these choices we all make, my kids could have play dates only outside. And I would really have to choose between my kids having a play date and my health. And I would know and I just sometimes would do it. I'd sometimes take 'em and I would just plan that, okay, I'm going to be in bed afterwards cause I'm going to have this whole crash from it, which I do. It's like my body just, all the energy drains out and it's like my batteries went out.
Aviva: I have a lot of mamas who I work with who have autoimmune diseases and they are a little more common at hormonal shifts in our life. So postpartum or menopause. And I think one of the most sad things that I see happening with autoimmune diseases or chronic illness in new mamas or mamas in general, at any point in being a mama, is just this incredible guilt that they don't have the energy to run around and play all the time or can't always go to the event. How do you cope with that piece of motherhood and how does your partner weigh in on all of this too?
Meghan: It's hard for him. It's really hard. I feel a lot of guilt. I've had to just accept that. I've come to accept that some days I like six o'clock, I'm just done. Or sometimes three o'clock or four. I feel lucky that a lot of days I do have the energy. But no, my kids will definitely be like, you're not playing with us enough. You're not playing with us enough.
Aviva: Every kid says that too. So you can just release that guilt from yourself right now. So many mamas are just done at four o'clock or six o’clock.
Meghan: Maybe this is the wrong strategy, so don’t quote me on it if it's not right for you. But I'm pretty explicit with my kids. I say to them, I have this, this is why it means this. It doesn't mean it every day, but today I don't have energy. And I make a joke a little, I'm like, you have all the baby energy and you need this, but I would need 1,200 coffees to play with you. And that would make me sick. I try to make it not threatening to them, but I'm pretty explicit. Like I have this stuff and it means this and daddy's going to play with you now. It's hard on my partner. I mean, it's hard on him. I don't know that he’s a hundred percent, he doesn't have the lived experience.
I get asked all the time about partners. How do we make it clear to them? Well, you know what? I think they just can't understand if they don't have the experience. But I think we can ask really explicit things. And so I'm like, I need you to do bedtime and bath and do the bed. And I'll say goodnight. And then he can even grumble about it. I don't care. It took me years to get to the place where I was like, oh, he might not be the person I go to for exact understanding. It might be one of you who are listening who's gone through it. You might be the person who understands. And what I need from him is the stability and the help when I really need it. It's hard to let go of that desire for total understanding. But I think that's something I've tried to bring into my life is to realize that I go to different people for different things.
It's been liberating. Cause then I'm like, not all my friends have to be great about my illness. Maybe they're great about other things, but I have these friends who are great about it.
Aviva: Do you think Long COVID is changing the narrative? As soon as Long COVID started being a thing, I remember just being in the car with my husband and hearing the first kind of reports of it and saying, oh, this is finally going to change the narrative and understanding and research for people with chronic fatigue, fibromyalgia, post Lyme, all the things. What are your thoughts?
Meghan: It changes daily. Yes, it's going to change things. It has to change things. We all have to band together in this moment and make sure it changes things. There is amidst this tragedy, which is a tragedy just beyond my ability…. It's just an epic tragedy. We have to come together and we have to say the scope and the visibility is there. I do think it's changing things. I think it's going to, the secondary tragedy, the knock-on tragedy is that it's going to take a lot longer than it should because people just… it's hard for physicians, it's hard for the government. It's hard for lay people to take in the reality of these diseases. But I'm working on a long piece about Long COVID right now and reporting. And I will say, on a note of hope here, I was up at Harvard meeting with all these researchers and it was so cool and so amazing. And what they're doing is paradigm changing, I think. And I think the answers are going to come. I do.
Aviva: I think it's going to provide some insights too. I remember when I was first hearing about Long COVID symptoms, I was like, well this sounds a little bit like POTS or mast cell symptoms. And I'm like, maybe low-dose naltrexone, maybe anti-inflammatories.
Meghan: Totally. And I think there's a lot of work around micro-clots that's really interesting. I have a bit of Long COVID. Unsurprisingly, when I got COVID, I just didn't handle it all that well. And so my health took two notches down last summer. It's taken a lot of work to get back to closer to where I was. One really interesting thing has been thinking about this idea of micro-clots that are coming out in research and this idea that your blood flow is slowed. So there's these paradigms, which even if not, that's not the one. Something is being really seriously explored that could be at work.
Aviva: It's even just allowing the question in a bigger way – something is really happening. This is not mass hysteria as people were kind of leaning to at one point. There's this sort of mass psychosis – no, something is really happening and we are living on the edge of medical knowledge.
Meghan: And let's get that knowledge. Also, look at funding on a really practical level. It's getting funded. So I think that's going to help.
Aviva: Before we go, if you could tell your younger self anything, how old would she be and what would you tell her? Would you add to anything about listening to yourself and really trusting yourself?
Meghan: I do wish I could go back in time and say, trust yourself listen to yourself. I think I would also add be compassionate to yourself, and it's funny but that's going to turn out to be one of the hardest things for you, for many of us who live with illness. And when you are having trouble compassionate to yourself, imagine for a moment someone you love and they're going through what you're going through and ask what advice you would give them.
Aviva: One thing that was critically important for you was finding that place that worked for you between getting conventional testing and also the wellness integrative world. How can people in your experience, in your opinion, advocate for themselves to get these tests from their providers and also explore the integrative wellness world in a way that also doesn't take them down a rabbit hole that may not be safe for them?
Meghan: Absolutely. I'll take the first part first, which is I have come to strongly feel – this would also be advice I'd give my young self – that if you're seeing a doctor who's really resistant when you ask for labs or when you would ask, could this be this or should I think about diet, you should just move on. I mean, in my experience it's really hard to get a resistant position partner to become suddenly accommodating. And I spent a lot of time trapped in these relationships that aren't working. So as hard as it feels and there's more legwork involved, move on. There are a lot of really good conventional doctors out there who are very open-minded and great also about saying this, I'm comfortable with, this is not for this reason, and my doctor is like that, she's awesome.
How do we navigate integrative and alternative medicine is so much harder because it's a more varied and complex terrain. Using your own gut check and just remembering not to just believe things you read, but to try to, as a journalist my training is to always have multiple sources confirming, but also to always ask, what if this is not true? And that training comes in really handy because it doesn't mean I'm not going to do the thing, but I'm like, okay, well what if this is not true? And I sort of pursue, what can I find about this that's would contradict this finding? The other thing is there's people out there like you, who are really interested in these areas of overlap but are going to say, well, this, I'm skeptical of this for this reason, or this myth is going around, but it's not true for this reason, but this is helpful. Luckily there's an emerging group of people who help us do that, and I try to listen to a lot of podcasts and not always believe every comment online, but actually listen to podcasts and inform myself and bring healthy skepticism.
Aviva: So your book was a finalist for National Book Award. Were you surprised? How did you feel when you learned that?
Meghan: Oh my god, I screamed out loud.
Aviva: Did you? I would too. That’s amazing. Congratulations.
Meghan: Thank you. I was so excited. I was surprised. I mean, I'll tell you, it goes to the heart of what we're talking about. I was terrified to put this book in the world because I do talk about exploring alternative medicine, and people have really deep feelings. Conventional medicine is like, no, don't do this. And some people in the wellness world are like, oh, this is great. I try to bring this, I try to be your best friend on the illness journey. Here's what I've done. This is what's helped. This is what's not, here's how I think about it after years. But it felt really scary, right? It's like this is kind of uncharted territory.
Aviva: Did you worry about being judged or losing credibility?
Meghan: Absolutely. And I also talk about, I have tick-borne illness that hasn't gone fully away after antibiotics, partly because I didn't get treated for 20 years. It doesn't seem so wild to say that maybe that left some stuff in me that for whatever reason is making me not feel great.
Aviva: Or just changed your immune system in ways that we don't know how to measure yet.
Meghan: You know the fundamental message of my book is there's too much incuriosity and too many supposed answers where there's still deep questions. And that felt terrifying to say out loud. I mean, it did. Who am I? I'm just a journalist.
Aviva: We are also celebrating a paperback coming out, so can you tell everyone where to find you and where to find your book?
Meghan: You can find your book on Amazon, barnesandnoble.com, at Bookshop.org, and hopefully your local store asks for them. If they don't have it, they'll order it for you. You can find me. My website is MeganORourke.com and I'm on Twitter and Instagram @Meganor, that's M E G H A N o r. And I'd love to hear from readers. I don't always have time to respond to each, but I read every email and we are trying to get slowly caught up. Many of you've been writing me. I'm trying to slowly respond to everyone.
Aviva: You're such a lovely human to talk with. Thank you for being here. Thank you for pushing beyond pushing the energy you had to bring this book to birth for so many people.
For everyone listening, please get Megan's book. But also if you have the resources, consider ordering a copy for your local library. Consider bringing a copy even if you don't have a chronic illness or invisible illness to your primary care doctor's office and give it as a gift because each of us making these little changes can actually change the shape of conventional medicine so that people who are sick and tired and struggling don't only have to be the only ones doing it. Thank you everyone for listening. We'll see you next time. And Megan, thank you again for joining me.
Meghan: Oh, thank you so much. This was a true delight.