How to Find Healing with Chronic Illness with Meghan O'Rourke

how do we reform health care and our discourses around medicine and sickness to accommodate the fact that our bodies aren't always these tidy containers that behave exactly like everyone else is.

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Thanks for joining us. Our guest on this episode is Megan O'Rourke, a journalist, poet, and New York Times best-selling author. Her work often tackles challenging subjects like grief, illness, and more. Megan's previous books include the best-selling memoir, The Long Goodbye, and the acclaimed poetry collections, Sun in Days, Once and Half Life. She's passionate about advocating for those living with chronic illness, and is a recipient of the Guggenheim Fellowship in many other awards.

Today, Megan and Eric discuss her book, The Invisible Kingdom, Reimagining Chronic Illness. Hi, Megan. Welcome to the show. Thanks, Eric. It's so good to be here. Yeah, I'm excited to discuss your book with you. It's called The Invisible Kingdom, Reimagining Chronic Illness. But before we get into that, let's start like we always do with the parable. There's a grandparent who's talking with her grandchild in life. There are two wolves inside of us that are always at battle.

One is a good wolf, which represents things like kindness and bravery and love. And the other is a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops and thinks about it for a second and looks up at their grandparents and says, well, which one wins? And the grandparent says the one you feed. So I'd like to start off by asking you what that parable means to you in your life and in the work that you do. Such a rich parable. And I think there's all kinds of ways we'll

dig into things today that pack to that parable. But I very quickly just think about how it reminds us that our expectations shape our lives and our expectations shape our stories. And I'll just quickly say that I think that's true for cultures as well as people. And so I'm thinking a lot about that story as it applies to our culture at large as well, to each of us individually.

as we talk about illness from a lot of angles, there's certainly a cultural angle to the way we look at illness. But maybe start off telling us a little bit about your journey of chronic illness in maybe the three minute version. I know you wrote a whole book about it, but just to sort of paint the broad picture for people and then we can kind of drill down into deeper areas. Absolutely. The three minute version is hard to tell because I in fact got sick

gradually and over the course of many years. But I can say that basically I was sick for more than a decade before I got any kind of diagnosis, right? So I was living in this period, in fact, really almost 15 years of living with no name for the suffering that I was undergoing.

And my symptoms were really ones that roamed the body and early on at least came and went. When I got really sick, they were pretty unrelenting. But in my 20s, you know, basically I just start feeling tired and fatigued and having strange neurological symptoms like electric shocks and joint pain. And over time ended up with not one diagnosis but a

cluster of diagnoses that included autoimmune disease. I had an autoimmune thyroid condition and also what my doctor calls an undifferentiated connective tissue disorder. It doesn't look quite like known diseases, but it's there.

And Lyme disease and something called Ehlers-Danlos syndrome, which is a genetic condition. So you hear there's this whole cluster of diagnoses I end up with that are in many ways, in my case, interrelated, but it would take really almost two decades to learn and understand more about how those interrelations existed. And so you go through this process and you get sicker over time.

Yeah, exactly. Sort of when I began getting sick, I had graduated from college. You know, possibly in college, there were bouts of fatigue and some of the same stuff, but it's really when I'm 21. It's the fall of 1997. I'm walking down the street and I start getting various sharp electric shocks. And then from there, over the next 15 years, I get sicker and sicker and sicker, like somebody waiting into ever deeper water. I'm not knowing where it's going to take them.

Do you end up with a diagnosis? Does it get sort of narrowed down? So over the years, you've got all these different things and then eventually you kind of get and you go, okay, now we kind of know what it is. Talk a little bit about what that process was like in the later stages.

So, you know, if I had been going to doctors in my 20s and saying, I don't know if something seems a little wrong, you know, what I had been met with was, well, maybe you're just anxious or you're stressed, right? But when I turned 32, my mother died and she had been living with cancer and as is the way, you know, it was a very stressful, challenging time where I didn't sleep much. And the day after she died, I came down with a virus of some kind and basically never got better.

I get this virus. I start being really severely fatigued and fatigue isn't even the word for it. It's we need another word. It was more like cellular innovation like felt like the very most basic energy functions of my body just weren't working like my legs were made of lead and

My body was sand that I had to somehow kind of hold together through effort. And you know, you go to a doctor and you say that to them and it's very hard for the doctor to figure out, you know, what to do with you. So over the next... Let's lay off the mushrooms, Megan. Right, totally, totally, right?

Yeah, doctors were kind of like, well, your mother decided, you know, and I had a new health insurance. So I had a whole new set of doctors who really didn't know me. And one of them said, well, maybe it's because you get your period and you're tired. And I was like, I don't think so. I'm also having joint pain and really distinct neurological problems at this point where I'm having a lot of difficulty with word recall.

Now, I'm a writer and a teacher and I work with words for a living, so this was really noticeable. It wasn't like a small thing. It was just basic words like sprint.

couldn't think of. And I would find myself saying, you know, the season that comes after winter. So I was getting increasingly kind of panicked to be honest and frustrated and scared because it was clear to me that something was really wrong. And I was kind of trudging from specialists to specialists and everyone was basically saying, Oh, it's not my problem. I'm not finding anything wrong in your labs.

So this goes on really for a few years. And I finally end up in the doctor, in the office of this doctor, who is the first to offer a diagnosis, and she listens to my story and takes my family history much more carefully than anyone had. And there's a lot of autoimmune disease in my family.

And she said, look, before we even do labs, I highly suspect that we're going to find you have an autoimmune disease. So that was an incredibly validating moment to your question of what was it like. And it was an important moment because it helped me feel that someone saw what I saw and believed me.

And sure enough, the labs came back and showed that I had a lot of autoimmune activity and I had this autoimmune thyroid disease. And for about a year, I thought that was it. I thought, okay, I've got it. She's given me medicine. She said, look, the medicine takes a while to kick in. Let's give this a month. We'll tweak it. We'll fine tune it. We do that. I'm just still not better. I'm like marginally more energetic, but my thyroid labs now look optimal. This other autoimmune activity has gotten better and yet I'm just still in

incredibly sick. And so that's when in a sense the deepest part of my quest began and I began to understand that whatever was wrong with me was not going to be a single label for which I could take a single medication, you know, and get better.

Yeah, this conversation comes for me not too long after I had a conversation with another writer, and she wrote a book about getting seven different mental health diagnoses over the course of her adult life.

And it really speaks to this idea of how difficult it is when your symptoms are not straightforward and they seem to potentially fall into a whole lot of different categories. And she ultimately got to the point with her where she did not want and does not want diagnoses. She doesn't want to know.

And you talk about this a little bit about, you know, we can look at diagnoses twofold. We can look at them. Sometimes they are very, very helpful and encouraging because they allow us to go, okay, there's a name for what I've got and they can give us hope.

We also know that the flip side of them can be stigmatizing. They can limit us. But I also think there's a third element that we don't talk a lot about, which is sort of what you just referred to, which is we get a diagnosis. It gives us some degree of hope that things are going to get better. And then they don't. And now it's even more confusing.

Absolutely. I mean, diagnosis is so complicated. So as you just heard, for me, that initial diagnosis really did bring relief. And I talk about this in my book, which is, I really didn't want a diagnosis, right? And I think in my case, it was because I, in a way, it's a flip side of your, your other guest story where I was having these symptoms that I was really convinced had some kind of origin that were not in mental health, right?

And I was being met with the sort of reflexive its anxiety. Now, I hope we do talk about the ways in which all this is intertwined. And I think it's really important to talk about mental health and chronic illness and anxiety and depression and chronic illness.

You know, as someone who had undergone a kind of mild depression in the past, this just felt so different. And it had so many very concrete symptoms that were very, very physical. And I really had the intuition, and that's really what it was, that something was being overlooked. And so that is the first piece of why I think diagnosis can matter for

what are often called invisibly ill patients with things like autoimmune disease, because it does help validate and categorize your experience, right, in a world in which no one wants to make accommodations for you, where everyone is like, why are you canceling dinner yet again, even your friends, right?

But I completely agree that in a way with the book charts is the journey from that moment when I get the first diagnosis to a kind of understanding that diagnosis is just a small piece of the journey and that the actual work of living with.

a disease is to live with the disease in whatever form it takes, the illness, the manifestations of it, the many ways in which it's individual and it doesn't exactly map onto someone else's experience with the same set of diagnosis. And then finally to your third point, which is so important,

I think one thing that really inhibited me was that it felt unlikely that i would have multiple diagnoses right and so i did kind of stop looking and that was a hindrance to because actually there was more going on and the kinds of conditions i write about in my book.

Often there's more than one of them and they coexist. And this is part of the framework. I'm really trying to unpack and show because I think at the time I kept thinking, God, maybe this all is in my head. How could I have so many things wrong with me? Right? Does that make sense?

Totally. Yeah. Let's talk a little bit about this idea of invisible illness that you talk about. You say the less we understand about a disease or a symptom, the more we psychologize or often stigmatize it. Yeah. So this is an idea I really borrow from the writer Susan Sontag.

who wrote a really great book published in 1978 called Illness as Metaphor that interestingly was occasioned by her own experience of breast cancer, but in the book she doesn't even write about herself. She just writes about the fact that there are all these diseases that

we don't understand well that we make kind of elaborate stories about. So tuberculosis was once thought to be a disease of romantic young souls, okay? And then over time we realized that bacteria causes it, but it's not until we have a treatment for TB that we stopped thinking of it as a disease that is somehow connected to a particular psychology.

she makes the same case about breast cancer that it was once thought to be repressed emotions were causing breast cancer. And she really objects that. So part of what I was interested in this book is the ways in which I think that these invisible illnesses that are driven by immune dysfunction

that by the way impacts every part of the body, including the brain, often, were being psychologized and stigmatized in ways that reduced their complexity and rendered them further invisible. And I think also, importantly, let society off the hook, thinking about them, worrying about them, helping treat them, and

researching them, which is to say there was this kind of reflexive and itself stigmatizing idea that these people are mentally ill and so we're putting them in this box and we're not thinking about these aspects of it, if that makes sense.

Yeah, you talk about how from a medical perspective, we tended to go from, broadly speaking, a time where we thought that disease was a condition of the person, a problem with the person. And then we've moved more into a model that says, hey, there's a germ and you treat the germ and then the problem gets resolved. And that both are sort of incomplete views.

Yeah, so in my own experience of illness, what really interested me early on and confused me, to be honest, was that it was really clear that when I was more stressed, or I had a really difficult week at work doing things maybe I didn't exactly want to do, or maybe I did want to do, but I wasn't feeling well enough to do them so that I was worried about doing them.

those weeks I was much sicker than any other weeks. And so initially that to me was really a confounding factor because I thought, God, does this mean that somehow it is all invented in my head, right? There was maybe no illness, you know, organic illness as we call them.

It is something purely driven by anxiety. And it was only researching this book and really going through the journey for the next 20 years that taught me that there's this whole category of disease we don't do a great job of thinking about, which are diseases that are organic to use the term that helps define them as not exclusively in mental illness. And they have a clearer cause of some kind. We don't understand that cause very well, but they are also shaped by

biography, by our lives, by things like stress, by things like food, by things like sleep, and all these choices we make. And it's really hard for us to think and talk about these diseases. Yeah, you say complicating germ theories paradigm of a specific disease entity

or the infection that tightly resolves. Researchers are showing that much of health depends on the interplay between soil and seed, host, and infection. With the immune system and one's microbiome as confounding factors, and as you just sort of added in there, I think our mental states are also another factor. So all of a sudden we have these incredibly complex

things going on that are very hard to tweeze apart. We all relate things back to ourselves. And so as somebody who's recovering from addiction and have worked with people recovering from addiction for a long time, addiction is such a complicated thing to reduce it to say, well, it's genetics. No, genetics probably have a role. It was the way you were raised.

Well, yeah, that probably had a role. It's your social support. It's hundreds of things. Now, again, there is, in your case, if we now extend that further into illness, there is actually probably to use the term an organic underlying or a germ component, but these things get so complicated.

Yeah, absolutely. And addiction is a great analogy in many ways, I think. But, you know, before modern medicine, all kinds of medical practices around the world and pre-modern medicine really thought about disease as the consequence of the encounter between something in the world. They didn't know what it was. They called

that sometimes things like animal cues and all these theories or bad winds, and also a specific person with a specific biography, right? They really thought of illness as biographical in some ways, in ways that could get us into trouble, right? But in ways that I think there's an important

piece of that that we just left behind when we embraced germ theory and moved from this idea that the soil mattered to just that the seed mattered. And part of what I'm arguing in the book is that there's this emerging understanding of medicine and disease that I think we've seen

vividly dramatized in the pandemic that shows us that we really need to think about both the soil and the seed. Disease is not just some abstract thing that happens to us and behaves exactly the same way in each of us. Even a virus behaves really differently in each of us. But for decades, medicine thought the whole definition of

germ theory is based on the idea that these things behave in almost exactly the same way in different bodies. That is turning out to be really not true as we've seen. And I think it leads us to a really interesting set of practical but also philosophical questions about how do we reform healthcare and our discourses around medicine and sickness to accommodate the fact that our bodies aren't always these tidy containers that behave exactly like everyone else's.

Yeah. Like anybody who's sick, you saw it help from all kinds of places. You know, anybody who's sick for a long time, you'll turn over a whole lot of stones. Let's broadly say though, to keep this simple, you did sort of traditional medicine and you did alternative medicine.

And they both have different paradigms and there is helpfulness in each. And there are things that I think are deeply problematic in each. Let's start with conventional medicine and just talk a little bit about where some of your key frustrations were there and what some of the real problems that you encountered were.

There were things about conventional medicine that were really important, and there were things about it that kind of ended up helping me tremendously. But what I found along the way was that I realized at some point that I was in a body that lived at the edge of medical knowledge. And as a consequence, I would show up in a doctor's office and labs would not show really clear cut, preexisting pattern. They would show a lot of strange things, by the way.

was showing up as something's going on. But doctors often would just not have the time, the energy, the bandwidth, the curiosity to explore this person who sickness looked really weird. And I think some of that's that we're in a really bureaucratic system that has as its basic building block, the 15 minute appointment. I mean, how do you take a complex history?

But the other problem was that these doctors were thinking of my body as if it were a car, right? It was a body that was made up of discrete parts and each person talked almost as if those parts were not interrelated.

And they were just there for the tune up, the oil change. Like if they couldn't see like, here's the problem in the carburetor and we know how to fix it. If I wasn't in crisis with a thing they could like really operate on and repair, they didn't know what to do with me. And I at this point needed not just answers, but also help living with illness and the absence of answers and conventional medicine had really nothing to offer to me.

in terms of how to help me learn to live with this new reality. And no one ever asked the question, for example, what symptom is bothering you the most?

Let's work together to figure out how we can improve your life by 10%, even if we can't fix the problem. That kind of discourse and exchange was just utterly missing from every single conventional medicine appointment I had. And so as a result, I'm sort of trudging from specialists to specialists. Each one takes more blood. It's stressful, exhausting, disheartening, dispiriting, right?

None of them are talking to each other and this is before electronic medical records. I was often faxing records from person to person. So it felt like I had just woken up in this pageantry of care that was really just this elaborate bureaucracy offering me something that wasn't what I needed.

Yeah. And there's that whole element of when you're feeling really miserable and you wait a long time to see a specialist. Totally. And you finally get in to see the specialist and then it's completely at best useless and at worst, just insulting and all that. It's just, it's so painful, you know? Oh, it's, it's, yeah, exactly.

You have a really interesting point and you referred to it, I don't know, five minutes ago, but I'm gonna bring it back up. You said doctors don't like to manage, they like to fix. And as you said, a lot of this dealing with a chronic illness is about management. And so we've got a healthcare system that is not designed in any way. There is no manager of your care. Ideally your primary care physician would be this, but that's not broadly speaking what most of them do. That's not what they know how to do.

And so, you know, the other thing you talk about is how quickly doctors empathy wanes. Yeah. Yeah. So we have this structural problem. I interviewed David Cutler, who's an economist who writes a lot about healthcare. And he said to me, you know, if something I wouldn't have known, he asked me, who's the second highest paid person on a football team? And I was like, well, I don't know. And he said, first paid is the quarterback. Second is the coach. And he said, that's because you need a coach to pull the choreography of all the moving parts together.

but we lack in healthcare is the coach, right? Primary care physicians, they should be that, but that's not really how medicine is set up. It's unrealistic in the current situation to ask bad of them, I think. This was really startling. I started researching doctor-patient relationships because it won't surprise you that I was really fascinated as a reporter, as a writer, as a person.

to realize that when I was going to doctor's office, that sometimes there was this kind of faint atmosphere of antagonism, right, which is really strange because it's called health care. And it was really noticeable, right? And there were reasons for it. And I think a lot of those reasons have to do with, as it turns out,

When you study doctors and empathy and healthcare workers and empathy, you find that doctors' empathy wanes alarmingly quickly when it gets measured, and it actually happens in med school. And it's almost a product by design in the way that med schools set up where these students are sent out, you know, into the hospital to do their, I forget what it's called, it's not rounds, but that basically it's when they're, you know, practicing in all the different departments.

And it's structured in a way such that they don't sleep and they're just exhausted. It's this kind of rite of passage in med school. You're supposed to go through this. And what studies have shown is that that period transforms these eager empathetic medicines into burned out would be doctors who have stopped being able to empathize with their patients. So it's really clear that there's structural realities in how medicine is set up that

uh, conspire really to drain empathy from doctors. I don't think it's that non-empathetic people want to be doctors. I think, right. The system does something to them. So this was pretty alarming to me and it's pretty noticeable. And on the flip side of that, I will just say what makes it even more alarming is that studies confirm what any of us lay people could tell them, which is that being cared for by a doctor actually makes us feel better.

I think any one of us who's been in an office knows that just this early. But when you stop and you measure outcomes, it's actually there in the outcomes too, that patients are pretty much impacted almost as powerfully by kindness and empathy as they are by some of the strongest medical drugs we have.

My mother has been in and out of hospitals for the last number of years and my partner's mom has Alzheimer's and that level of care, when you get it, it really does make a huge difference.

You know, I could just see it in my mom, you know, the difference when she's treated with kindness and respect and interest from a doctor versus when she's not. She's very different. You know, the quality of her life is very different. Wow. So amazing.

It's so intuitive, but we've come to this point where we have to study it to prove it to. Yeah, that's right. And to your point, a lot of this is not to vilify doctors, right? We have a structural system set up in such a way that time isn't there, that the pressure is on all aspects. So we've got this

conventional healthcare system that we've talked about where you're sort of rushed in and out. There's less empathy. You're treated sort of like a car. You're sort of less than human. We're looking at things in isolation. And then you go, all right, I had enough of this and you wander into alternative medicine. And you bump up against very often something very, very different feeling.

totally. I find it so challenging to talk about functional and alternative medicine. And by the way, there's a whole middle world too called functional or integrative medicine, which often is you're seeing MDs, people who have been trained in the Western system. And a lot of the people I saw had started as conventional doctors and gotten really disillusioned by what they were able to offer and had decided to study other modalities.

It's really hard to talk about because there's so much suspicion. Often there's just, you know, either people reflexively hate alternative medicine or they reflexively love alternative medicine, right? But I think there's a lot of us in the middle too, which is to say I came to it with a lot of skepticism. I just wasn't part of my childhood growing up. My parents were like, you know, you go to the doctor or they help you. That's it or they don't help you.

But what I found was that I needed this care, this warmth, and I needed coaching. I needed someone to help me calmly sort through the many symptoms I was having to look really deeply at what was going on with me as a whole system and to see how they could support me. I mean, I just needed that. I was really falling apart physically. I was really sick. And that's what I got from alternative medicine.

Did I see people along the way who I didn't trust and who I let sell me things that I don't think I really needed? Yes. But what I found in integrative and alternative medicine was another model of the body, which was one that was more like a garden, which was a much more appealing model as a sick person, which is your body is this kind of ecology. It's all interrelated.

If we tweak your sleep or if we help your nervous system rest by giving you acupuncture and putting you into a calm state.

It's gonna help in ways we can't entirely measure. And that was true for me, right? It didn't magically cure me, but I would say that some of these modalities really helped me by 20 to 40%. And the other thing they did was make me feel listened to, seen, cared for. And in that sense, they gave me the fortitude to continue and that sense of well-being in my mind that I needed as well, if that makes sense.

Yeah. So there's a lot of obvious benefits in the way care is delivered. I think to your point, the way we're sort of seen as whole systems, you know, my experiences with functional medicine have been largely positive, the things that you're describing. Yeah. And embedded in that world, broadly speaking, there are some challenges. Yeah. What would you say to you is sort of the biggest challenge embedded in that model?

I think the biggest challenge is that by virtue of what they are offering, which is a more individualized approach that goes beyond what evidence-based medicine can offer,

there's not necessarily evidence for it, right? And if the building block of Western or conventional medicine is this 15-minute appointment in which the doctor can't offer care, in a way, the fundamental business model of some functional medicine and integrated medicine is that they don't take insurance and that they are offering you a lot of things that you are paying for.

what occurred to me along the way is that, you know, of course, it's almost in their interest to make me feel I need a lot of supplements or tests or things because that's sort of part of what they're doing is that's how they function financially. But, you know, you have to believe or hope at the end of the day that you're finding what you trust and feel that they're really helping you find, you know, not 20 supplements

12 of which you don't need, but they're helping you in a more systematic methodological way. Find the four supplements you do need. But I think that's the challenge, right? It's like you're in this kind of uncharted, unmeasured by definition territory, and you really don't know whom to trust or who's good and who's not. You know, which by the way applies to the conventional medicine, but there you have this superstructure of the idea of evidence based care, whereas

In this other world, we're saying, you know, we can't really study acupuncture on large groups of people because the whole idea is that everyone behaves a little differently, right, which is true. Now, that said, there's some really good studies of how acupuncture, by the way, does help in these immune mediated diseases that are pretty clear cut. But yeah, it felt a little like I was

and explore in our uncharted territory. Yeah. The other thing I think that shows up in that world and the way you refer to it is it's enthrall to the idea that we control the outcomes of our lives in the alternative health world, often through the case of self purification. This is where things like, you know, the power of positive thinking starts to show up more.

or it's all because your diet isn't quite right, which is not to say that diet isn't a factor in things, because of course it's a factor in nearly everything. But I do think you start to run into this sense where you can a little bit, instead of the germ being the fault, it's the way you're living is the fault, or the way you're thinking can be the fault.

Yeah, and by the way, I really fell into this. Because I was having a lot of symptoms when I ate, I became very obsessed with my diet in ways that were ultimately very positive and helped me identify how to eat for my own personal health.

But along the way, I realized at one point that I was a bit caged by it, that I was so scared of eating the wrong thing that I would almost make myself say from the anxiety of, oh, no, I did eat an egg and I'm not supposed to, right? And I would focus on it. But also one reason alternative medicine is persuasive and powerful is that we do all have the sense that there are things about contemporary life that are not that healthy.

Right from our endless productivity and hyper connectedness to car exhaust noise pollution to you know our food system like it's true that all these things are not healthy so when presented with this world view that said look if you change these things you might be able to get better i wanted that to be the whole truth.

And I wanted it to be utterly under my control because I could have control of that. I could purify myself. I could drink green juice all day long. I could eat massage, kill salad and probiotics. And I could just will myself back to health. And in a funny way, I was still back in an old Western modern relationship to my body, but I had just replaced one set of muscle through it with another set of muscle through it, which is

muscle through it through self purification. And so that slowed me down and actually getting to the root cause ironically of what was going on with me because I think for a long time, I personally just got a little bit hung up on maybe I can control this through kind of purifying myself.

So this kind of leads us into the next area that I'd really like to talk about because I think you write about it in really helpful and nuanced ways. And I think that's an important way to have this conversation because it is very nuanced. And it is really the role of

emotions and thoughts and how they interact with physical sensations. We talked earlier about how we know that the care effect when you're treated more kindly by your doctor, you have better outcomes. So there's a clear element there of like, okay, something that's happening emotionally is translating to better outcomes

And this discussion tends to fall into one of two camps. One camp is, you know, the reason that you have breast cancer is because you have repressed emotions. Or we go to the other extreme and we go, well, none of that stuff matters at all. And the reality is far more nuanced. Talk to me about sort of some of your journey through that world. Yeah. So it's such a hard thing to talk about because I think

One thing that is worth saying is that our relationships as people who live with illness to these ideas probably fluctuates and changes too, right? And certainly my own did, which is to say I existed in a somewhat paradoxical state at times and in some ways still do. And that was that when people would say to me, well, maybe you're feeling sick because you're this kind of type A personality. You know, you're very

hard-working and perfectionistic and it's always type A people who are sick. I would really bridle at that because it put the responsibility for the illness and my suffering squarely on my shoulders. Meanwhile, letting the observer totally off the hook and also reassuring them that maybe this couldn't happen to them because they weren't

like me, whatever that meant. So there's this kind of way, I think, as a sick person with an ill-defined disease, which are many of them, you often encounter this reflexive way in which other people want to reassure themselves that they would never be in your shoes because even if they got there, they could control it somehow through being less stressed.

But at the same time, as I already said, I was aware that stress was playing a role in my illness. And I could tell that my own habit of taking things very, very seriously wasn't always helping me let go or relax. I could tell I lived in New York. I was probably never relaxing. I was never sleeping enough. I was never figuring out how to just let go and really let the restore and repair part of my body.

and help a nervous system kick in. So in the book, I set out to try to really think about these questions in a really transparent way. And part of what's challenging is that it's exactly what you've named because there's this reflexive desire to say that everything about an illness is caused by the mind. It's harder to have a nuanced conversation about, okay, in fact, a lot of illnesses are caused by a germ.

the combination of a genetic piece encountering a virus. But if that encounter happens at a moment when your mother dies, what else happens? How does that additional stress further shape and dimensionalize your illness? How does the fact that I had been bitten by a tick that had Lyme disease

intersect with my life history in ways that lead my illness story to go kind of gradually downhill and then suddenly downhill, right? And I became really interested in that conversation, that piece. And I turned to a lot of reading that shows really clearly, by the way, that there's this entanglement. It's kind of beautiful entanglement in a way.

of the immune system and the nervous system, which makes it really clear that when your nervous system is stimulated in certain ways, your immune system changes. And when your immune system changes in some ways, your nervous system changes so that if you are in a world of ever constant stress, it's just more likely that things are going to go wrong in the very beautiful dance of immune regulation that we're all experiencing.

all day long with the immune cells changing and coming and going. But second, I stumbled on this fascinating work of a woman at Harvard named Ellen Langer.

who really looks at how expectations shape our biology. And what she found is that expectations really do shape our biology, but not in a vague power of positive thinking kind of way, right? It's more that when we really are convinced of the reality of something, when we authentically and fully experience a reality, that impacts us.

What's harder to control is using our mind to persuade ourselves of the authentic reality of something. Right. Right. Does that distinction make sense? It's really important. So you can't like be a person who's allergic to horses.

walk into a barn and just say, I'm not allergic to horses. I'm not allergic to horses. I'm positively thinking about horses. That's not what she's saying. That's not going to necessarily work. She says, actually, you just shouldn't go into the barn. You should find those triggers and avoid them, but you should be aware of the ways in which your mind is contributing to creating

situations and you can in some ways set up situations in which you try to authentically be encountering, you know, joy, for example. The telling example she gives is a study, she calls the counterclockwise study where she takes a lot of older people and she brings them to a place where there's two groups and one group is treated as if they're 30 years younger than they are.

The old room is met at the door and people say, please let me take your bag. Let me help you up the stairs. Are your knees okay? Et cetera, et cetera. The other group, no one helps them. Everyone's like, your room is there. In their rooms, they're playing music from 30 years ago. They can only watch TV shows from 30 years ago. At the end of the week, that group has completely different biomarkers and pain levels than the other group, right? Which tells you something, but what exactly?

That's the problem for all of us. What exactly does this mean?

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I think what you speak to there is so important too, which is that it's the things that we really believe that do have an impact. It's just that we then get caught up in trying to think that we could get ourselves to believe something. I've read studies about do affirmations work or not.

Anything that's from the psychological study world, you've got to take with the grain of salt because we've got replicability issues and all kinds of things. But what it seems to point to is that it's sort of a cruel thing in that affirmations work for people who need them the least because they actually believe them.

So the affirmation that works for you is one that you actually believe. So if you can work to find an affirmation that you can believe, you know, I might find an affirmation that says, I tend to work hard most days. And I might go, yeah, I do believe that. And that's gonna, right?

On the other hand, I can't make myself believe something I don't. It's the cruelty of positive thinking sometimes is that it's just like, well, if you just thought positively, the reality is if you really thought that way, really felt that way, sure, there's benefits.

You've got a line in the book. I don't think I have it in my notes. I wish I did. But you basically talk about just the grinding weight of trying to keep this sort of constantly positive mood. And then all of a sudden you're in this sort of mental mind f of, oh my God, I'm thinking something negative. I'm terrible. Like what?

It's just is this tough place. And as we say, you can't completely say, well, your mind and emotions don't play a role. So it's another form of self purification in a mental sense. Totally, totally. And it's another place where I think those who

including us. Those of us who are experiencing sickness or things that we're trying to get over and those around us, it's another place we want to believe works. I can't tell you how many people gave me John Sarno's book, Healing Back Pain, because it works for some people to tell themselves, but it didn't work for me and they didn't believe it. They thought that still I was not doing it right. I was like, no, trust me, I've tried. It did help with my neck pain a little bit, but it didn't help with all these other symptoms.

right? So clearly there is this whole mysterious world of the genuine interconnection of our minds and bodies in ways that are like

fouling wild, sublime even, terrifying, but we want to reduce it to the most packaged kind of least threatening version of itself. And this is really different, but I'll give you an example that I'm going to botch slightly. But there's some evidence that when a mother dies, who's carried children in her body, that her children are more likely to get autoimmune disease.

But something about their immune cells changes after their, I mean, which is just like, so clearly there's these wild interconnections that should fill us with awe and awe is the knowledge that we don't understand as opposed to the desire to say, okay, just think your way out of this cancer, right? That's not the path here, I don't think.

Yeah, it gets to also an area I am really interested in, which is how free are we to make different choices based on our particular mental landscape? You know, go back to addiction. On one hand, it is absolutely true that the alcoholic or the addict is the one who has to make the choice not to pick up the drugs, right?

I also know that having sitting 15 years sober today or so, and one day sober 15 years ago, the degree of choice that I feel like I had is radically different. It's not the same thing to just say like, well, it was my choice. Well, yes, that's true. And I have a whole lot more choice today than I had then for a whole bunch of different factors, for a whole bunch of different reasons. And so when we start to talk about positive thinking, I think it's pretty obvious there are some people

That just comes pretty natural too. And then there are others of us like Eor, who's conducting the interview over here, who, you know, it's a harder battle for me. Yeah, absolutely. And also, I think in both illness and addiction and any of these conditions that we're talking about that are embodied physically and psychologically, right? There's a journey we go on. It's not the journey we think we're going on.

Right. I think there's something fundamental that 15 years probably took you places that you could not have anticipated, right? In some ways, a dark tidy that aren't exactly a script that anyone could have handed you. And the same is true in these illnesses, right? And yet we want for understandable reasons to kind of tidy the script. Yeah. Does that maybe make sense as a metaphor, tidy the script? I don't know, but you know what I mean. Yeah. Well, we want easy answers. Yeah. I mean, we want easy answers. I mean, the beauty is hard.

It's really hard. And particularly when you're suffering, you know, when you're suffering, you want like, think this, drink this, take that, you know, like we just want to be better. Yeah. Want to dive a little deeper into this idea of emotions and thoughts and physical symptoms. We've had a woman on the show a couple of times. She's a Buddhist teacher named Tony Bernhard.

She's lived with chronic illness, chronic pain. And she described this in a way that I thought was one of the best ways that I'd heard it described. And I think it's really interesting. She said, you know, if I'm talking about chronic pain, I can determine there are sort of three elements here. Element one is the physical sensations of pain.

Element two is sort of my level of resistance to those things, how much I'm fighting against it, and then the third element is sort of all the stories I'm telling myself about what this thing means. And her point is the first one, obviously, we may or may not be able to do anything about, right? You assume you're doing what you can do, you go to the doctor, you've got a chronic pain,

And the other two, we've got a little bit more control over and think that that makes a certain type of sense, although as you and I've just been saying, like element two and three in there, it's not like we have complete control over. It's not as easy as just going, well, I'll just think positive, right? But we have the ability to work with it emotionally. You described that when it came to your chronic pain, that you were able to sort of work with it a little bit easier in the way that I'm describing.

you were sort of able to separate it out into its little elements, but that when you got into some of your other symptoms, things like brain fog or tiredness, that that was much harder to do. So I guess I'll first ask you, what do you think about sort of breaking it into those three categories? And then secondly, share sort of what worked for you when it came to pain that didn't work in other areas. So yeah, I know Tony Bernhard's work and I think that's a really important observation, you know, again, with the caveat that

We don't control it all, but yeah, I thought a lot about Buddhism and I read a fair amount when I was really sick and I would add to her three categories a fourth which is what the world is throwing at you Oh, yes, because speaking for myself I'm in pain every day, but when like I'm just dealing with someone who it's not just great on me But I think like represents everything wrong in the world

Like, you know what I mean? Those kids people are like, this is not what we need. My pain gets harder to tolerate, right? Or then think about, okay, that's a trivial example. Think about someone who's got two young kids and is the father worried about providing for them and losing his job and how that exacerbates the pain.

right? That's not just a story he's telling himself. That's a story the culture is imposing on him. So I do think part of the work in my book is to try to add that fourth piece in and say, we got to all pause and talk about ourselves, but also talk about what's coming at us, right? Yeah.

In terms of pain, it's a really interesting thing because pain is a signal, right? It's a signal that creates an affect or a feeling. And there was a moment that I described in the book where I was in so much pain, I thought I was going to die. And I remember just stopping and thinking, okay, I'm just going to observe this. This is just something that's happening to me. That's how I'm going to survive it.

It didn't make the pain less bad, but it made time change a little bit and it gave me that little degree of this two shell paths that I needed in that moment. So I do think that one of the things we also don't talk about in terms of pain is where is it and how does it impacts you and how does that become part of the story so that

what enters with pain is fear, right? Fear that it won't go away, fear that it will come back, fear that it will come back just when you can't afford for it to come back. So, you know, I think in my life, one thing I've been able to identify in terms of pain and then even these other symptoms is the role that fear and lack of control play. Yeah. And my own

intense desire for control. And while I could learn to manage pain, what was really hard to learn to manage, as you said, was fatigue and brain fog, because those things were at the very center of my perceptual being. And they made it hard to apply effort to anything. Whereas if you think about what we're talking about pain, part of what we're doing, it's sort of a cognitive effort, right? You're having to be effortful.

about at least moving to that place where you're practiced at, okay, I'm breathing through this, whatever it is you need to do. But what brain fogged it was made it hard to even muster that effort, right? So you're just in this kind of morass that is really hard to visualize how you're going to keep surviving it because you don't even have the meaning of making meaning of it, right? Yes.

That said, what I can say is that now in my life, you know, I talk about this in the book, I'm not better in the traditional sense of the world, but I'm not as afflicted as I was. And a lot of days I'm sort of in the 60 to 80% range. And there will be periods where those symptoms return fatigue in particular brain fog. And it's really scary. And I can let that symptom exist. And then this whole story starts to tell, right? My brain

insurance, the story begins, and I think, oh my God, here I go, I'm sliding down this path, I'm never going to get better, my children, what will happen, my job. You can really start to catastrophize. And one of the things I talk about in the book is that I think the chronically ill patient has to live in a dual reality in which she's both insistent on the reality of her disease when she needs to be and advocates for herself.

takes the time to, you know, off when you need to, but also resist, you know, her own most catastrophic fears, right? And you have to work in that sweet spot somehow. And it's very much what Tony Bernhard was talking about of identifying the reality, living with it, observing it,

And time becomes this really complicated piece in chronic illness because you know it's going to come again. So some part of you is always waiting, even on the good days. What's going to happen? Yeah, it makes me think a little bit about depression. And I don't even know how to talk about it anymore.

It's sort of back to labels and diagnosis and all that. I've studied a lot in Buddhism. In Buddhism, we talk a lot about using the energy of the emotion to be transforming. And I'm like, yeah, okay, that's great, except when you're dealing with an emotion that has zero energy, like anger. Okay. Yeah.

I could see harnessing anger. I can even see harnessing sadness. But when there's nothing, it's more of a challenge to work with nothing. And that's what brain fog and fatigue are. They're nothing or there's something that's so amorphous as to be nothing.

So let's talk a little bit about healing. You ask in the book, what does it mean for a chronically ill patient to heal? You say in some cases it may be a remission of disease, but in others it means the patient is now able to manage the illness with some degree of integrity. What do you mean by that word integrity? What I mean is what I was just talking about, about advocating for yourself

Accepting acceptance overused sort of buzzword, but this goes back to what we were just talking about. I think when I was first sick, I just wanted to get better.

And I meant better in the way that well people mean better. I just wanted this illness to go away. I wanted to go back to the person I had been. I wanted to forget this chapter had ever been part of my life and just be living in this other sort of delusional story in which, you know, I was this intact person who was just going to keep living my life as I thought it might unfold as a person in her twenties.

And so part of the travels, the quest that I went on, I thought I was going on a quest to recover, but actually the quest took me in places that were more about learning to live with limitations. Again, that can sound sort of jargony and easy to say, but I think anyone who's really done it knows how hard it is and how real the work behind that language is.

So part of what I mean is that integrity of not denying the very condition you have, but living with it with some integrity in which you have come to, if not acceptfully acknowledge, I guess, the reality that your body is not working in the way you hoped it would, and that your body is shaped by limitations, as are all of ours.

But in this way that's brought a kind of heightened knowledge to you and that you're able to both advocate for yourself and that you have people who see and validate that reality that you have now acknowledged I think that's the key other pieces you can't live in integrity unless you have.

that doctor, that physician, that acupuncturist, whoever it is, that friend who really sees and validates and understands that reality. Yeah, you talk about healing being thought of in a sense of wholeness. You say a patient is healed that is not solely by steroids or antibiotics, but also by nature, thrilling conversations, touch, empathy, being made to feel whole rather than distraught as she exits doctor's appointments.

Yeah, exactly, right? I mean, you can be a sick person whose life is, quote unquote, limited, but you can have incredible amounts of joy and these thrilling, right? What is healing? It doesn't mean that I can do whatever I want, but it means that I have the possibility of joy, I think, for me. And when I had the worst brain fog and fatigue, that wasn't fair, because also no one saw it. And so there was never the sense that I might experience a reprieve.

Yeah, there's an old Buddhist story of a person who is being chased by a tiger and they come to the edge of a cliff and they start climbing down the cliff on a vine and they've got a tiger above them and there's a tiger below them and it's a 200 feet fall and you know a mouse comes out and starts gnawing on the vine and at the same moment they see a beautiful strawberry right there.

And I love that story because I think that speaks to what we're talking about. Chronic illness makes it more clear that you've got a tiger above you, a tiger below you. The vine is getting gnawed on. But that's everybody's life to some degree, right? Your mom is sick, your dad is sick, your dog is sick, you're sick. You got laid off from your job, your lover left you. Life is just filled with this.

And then there are these strawberries. Let's wrap up here because I know we got to go, but I just real quick want to ask a question about something you call the wisdom narrative, which is, you know, we have this narrative, you say that stories we tell about illness are almost entirely about overcoming it. But if an illness can't be overcome, we have this story about we grow wiser as a result of suffering.

Right? Which there's truth in that, but there's more nuance to it than just that. Can you say a little bit about that kind of as a way of wrapping up?

You know, it's really hard. This is another chapter where I tried to get at something nuanced and say, I think there is a way in which wisdom comes, what you were just talking about, the knowledge that, of course, this is all imperiled. We're all imperiled. And we've got to just look at those strawberries. I think I say this in the book, or maybe I didn't in the end, but, you know, life is a lot funnier to me now than it was before I was sick because why not? Right?

Why don't I look for those strawberries and those moments of joy in different ways. But what I wanted to really point out was some ways in which the society around us, whether you're chronically ill, I'm sure this is true, addiction too, exacts a kind of moral tax, right? In order to have to think about your suffering, it wants to get something back from you.

which is the performance of moral grace, the performance of triumph over adversity, the idea that it was somehow worth it, because in the end, you've been enlightened. And what I objected to is the reflexiveness of that again. And what I wanna point out is that many of us might not choose to have gone through, we hear it all the time, by the way, or I would never, thank God I did go through this, right? No, screw that, I wish I had not.

I mean, I really do. But I did. So, you know, okay, so now what? But that should be on my terms and not other people's terms, right? It shouldn't be that those of us who experience these things are kind of asked by society. There's a sociologist who's a really famous sociologist of illness and talks about like how inspiring it is to watch people

suffer with moral grace. And I was like, well, but what if you can't suffer with grace, right? What you are caring for six children and you've lost your job. Like, I know when there's no great disability out there for you. So, you know, that's a lot to ask of that person. So that's what I'm trying to unpack and say, you know, I think wisdom does come. The word itself is a fascinating word. Etymologically, it's connected to the word doom.

And I think in the book, I talk about the idea that wisdom is something you get from the encounter with doom. But an encounter with doom leaves its claw marks on you too. And it's complicated. It's just, again, one of these really complicated things that we need to talk about in different ways, I think.

Yep. Well, thank you so much. Like I said, I really loved the book, beautiful writing, lots of great insight that's not, you know, as we've said, sort of not bubble gum insight, but true deep reflection on a really difficult situation. So thank you so much for taking the time to come on. I've really enjoyed getting to spend some time with you. Thank you so much. I really enjoyed this conversation and look forward to listening to many more and thanks again.

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