Speaker 1: How do we reform healthcare and our discourses around medicine
Speaker 1: and sickness to accommodate the fact that our bodies aren't
Speaker 1: always these tidy containers that behave exactly like everyone else's.
Speaker 2: Welcome to the one you feed Throughout time, great thinkers
Speaker 2: have recognized the importance of the thoughts we have, quotes
Speaker 2: like garbage in, garbage out, or you are what you think,
Speaker 2: ring true, and yet for many of us, our thoughts
Speaker 2: don't strengthen or empower us. We tend toward negativity, self pity, jealousy,
Speaker 2: or fear. We see what we don't have instead of
Speaker 2: what we do. We think things that hold us back
Speaker 2: and dampen our spirit. But it's not just about thinking.
Speaker 2: Our actions matter. It takes conscious, consistent, and creative effort
Speaker 2: to make a life worth living. This podcast is about
Speaker 2: how other people keep themselves moving in the right direction.
Speaker 3: How they feed their good wolf. Thanks for joining us.
Speaker 3: Our guest on this episode is Meghan O'Rourke, a journalist, poet,
Speaker 3: and New York Times bestselling author. Her work often tackles
Speaker 3: challenging subjects like grief, illness, and more. Megan's previous books
Speaker 3: include the best selling memoir The Long Goodbye, and the
Speaker 3: acclaimed poetry collections Sun and Days, Once and Half Life.
Speaker 3: She's passionate about advocating for those living with chronic illness,
Speaker 3: and as a recipient of the Guggenheim Fellowship in many
Speaker 3: other awards. Today, Megan and Eric discuss her book, The
Speaker 3: Invisible Kingdom, Reimagining Chronic Illness.
Speaker 4: Hi, Megan, welcome to the show.
Speaker 1: Thanks, Eric, it's so good to be here.
Speaker 4: Yeah, I'm excited to discuss your book with you. It's
Speaker 4: called The Invisible Kingdom, Reimagining Chronic Illness. Yes, but before
Speaker 4: we get into that, let's start like we always do
Speaker 4: with the parable. There's a grandparent who's talking with their
Speaker 4: grandchild and they say, in life, there are two wolves
Speaker 4: inside of us that are always at battle. One is
Speaker 4: a good wolf, which represents things like kindness and bravery
Speaker 4: and love, and the other's a bad wolf, which represents
Speaker 4: things like greed and hatred and fear. And the grandchild
Speaker 4: stops and thinks about it for a second and looks
Speaker 4: up at their grandparents says, well, which one wins? And
Speaker 4: the grandparent says, the one you feed. So I'd like
Speaker 4: to start off by asking you what that parable means
Speaker 4: to you in your life and in the work that
Speaker 4: you do.
Speaker 1: It's such a rich parable, and I think there's all
Speaker 1: kinds of ways we'll dig into things today that back
Speaker 1: to that parable. But I very quickly just think about
Speaker 1: how it reminds us that our expectations shape our lives,
Speaker 1: and our expectations shape our stories. And I'll just quickly
Speaker 1: say that I think that's true for cultures as well
Speaker 1: as people, And so I'm thinking a lot about that
Speaker 1: story as it applies to our culture at large, as
Speaker 1: well to each of us individually.
Speaker 4: As we talk about illness from a lot of angles,
Speaker 4: there's certainly a cultural angle to the way we look
Speaker 4: at illness. But maybe start off telling us a little
Speaker 4: bit about your journey of chronic illness in you know,
Speaker 4: maybe the three minute version. I know you wrote a
Speaker 4: whole book about it, but just to sort of paint
Speaker 4: the broad picture for people, and then we can kind
Speaker 4: of drill down into deeper areas.
Speaker 1: Absolutely, the three minute version is hard to tell, because I,
Speaker 1: in fact got sick gradually and over the course of
Speaker 1: many years. But I can say that basically I was
Speaker 1: sick for more than a decade before I got any
Speaker 1: kind of diagnosis, right, So I was living in this period,
Speaker 1: in fact, really almost fifteen years of living with no
Speaker 1: name for the suffering that I was undergoing. And my
Speaker 1: symptoms were really ones that roamed the body, and early
Speaker 1: on at least came and went. When I got really sick,
Speaker 1: they were pretty unrelenting. But when my twenties, you know,
Speaker 1: basically I just start feeling tired and fatigued and having
Speaker 1: strained neurological symptoms like electric shocks and joint pain, and
Speaker 1: over time ended up with not one diagnosis, but a
Speaker 1: cluster of diagnoses that included autoimmune disease. I had an
Speaker 1: autoimmune thyroid condition and also what my doctor calls an
Speaker 1: undifferentiated connective tissue disorder. Doesn't look quite like known diseases,
Speaker 1: but it's there, and lime disease, and something called Eller's
Speaker 1: dan Low syndrome, which is a genetic condition. So you're hear,
Speaker 1: there's this whole cluster of diagnoses I end up with
Speaker 1: that are in many ways, in my case, interrelated, but
Speaker 1: it would take really almost two decades to learn and
Speaker 1: understand more about how those interrelations existed.
Speaker 4: And so you go through this process and you get sicker,
Speaker 4: over time.
Speaker 1: Yeah, exactly. It's sort of what I began getting sick.
Speaker 1: I had graduated from college. You know, possibly in college
Speaker 1: there were bouts of fatigue and some of this same stuff,
Speaker 1: but it's really when I'm twenty one. It's the fall
Speaker 1: of nineteen ninety s. I'm walking down the street and
Speaker 1: I start getting very sharp electric shocks, and then from there,
Speaker 1: over the next fifteen years, I get sicker and sicker
Speaker 1: and sicker, like somebody waiting into ever deeper water and
Speaker 1: not knowing where it's going to take them.
Speaker 4: Do you end up with a diagnosis? Does it get
Speaker 4: sort of narrowed down? So over the years, you've got
Speaker 4: all these different things, and then eventually you kind of
Speaker 4: get and you go, okay, now we kind of know
Speaker 4: what it is. Talk a little bit about what that
Speaker 4: process was like in the later stages.
Speaker 1: So, you know, if I had been going to doctors
Speaker 1: in my twenties and saying, I don't know, something seems
Speaker 1: a little wrong, you know, what I had been met
Speaker 1: with was, well, maybe you're just anxious or you're stressed. Right,
Speaker 1: But when I turned thirty two, my mother died, and
Speaker 1: she had been living with cancer, and as is the
Speaker 1: way you know, it was a very stressful, challenging time
Speaker 1: where I didn't sleep much, and the day after she died,
Speaker 1: I came down with a virus of some kind and
Speaker 1: basically never got better. So I get this virus, I
Speaker 1: start being really severely fatigued, and fatigue isn't even the
Speaker 1: word for it. It's we need another word. It was
Speaker 1: more like cellular enervation. Like felt like the very most
Speaker 1: basic energy functions of my body just weren't working, Like
Speaker 1: my legs were made of lead and my body was
Speaker 1: sand that I had to somehow kind of hold together
Speaker 1: through effort. And you know, you go to a doctor
Speaker 1: and you try to say that to them, and it's
Speaker 1: very hard for the doctor to figure out, you know,
Speaker 1: what to do with you. So over the.
Speaker 4: Next way off the mushrooms.
Speaker 1: Megan right, totally, totally right. So, you know, doctors were
Speaker 1: kind of like, well, your mother just died, you know,
Speaker 1: and I have a new health insurance, so I had
Speaker 1: a whole new set of doctors who really didn't know me.
Speaker 1: And one of them said, well, maybe it's because you
Speaker 1: get your period and you're tired, and I was like,
Speaker 1: I don't think so. I'm also having joint pain and
Speaker 1: really distinct neurological problems at this point where I'm having
Speaker 1: a lot of difficulty with word. Recall, now, I'm a
Speaker 1: writer and a teacher, and I work with words for
Speaker 1: a living, so this was really noticeable. It wasn't like
Speaker 1: a small thing. It was just basic words like spring
Speaker 1: couldn't think of and I would find myself saying, you know,
Speaker 1: the season that comes after winter. So I was getting
Speaker 1: increasingly kind of panicked, to be honest, and frustrated and
Speaker 1: scared because it was clear to me that something was
Speaker 1: really wrong. And I was kind of trudging from specialists
Speaker 1: to specialists, and everyone was basically saying, oh, it's not
Speaker 1: my problem. I'm not finding anything wrong in your labs.
Speaker 1: So this goes on really for a few years, and
Speaker 1: I finally end up in the doctor in the office
Speaker 1: of this doctor who is the first to offer a diagnosis,
Speaker 1: and she listens to my story and takes my family
Speaker 1: history much more carefully than anyone had, and there's a
Speaker 1: lot of autoimmune disease in my family. And she said, look,
Speaker 1: before we even do labs, I highly suspect that we're
Speaker 1: going to find you have an auto immune disease. So
Speaker 1: that was an incredibly validating moment to your question of
Speaker 1: what was it like? And it was an important moment
Speaker 1: because it helped me feel that someone saw what I
Speaker 1: saw and believed me. And sure enough, the labs came
Speaker 1: back and showed that I had a lot of autoimmune
Speaker 1: activity and I had this autoimmune thyroid disease. And for
Speaker 1: about a year I thought that was it. I thought, Okay,
Speaker 1: I've got it. She's given me medicine. She said, Look,
Speaker 1: the medicine takes a while to kick in. Let's give
Speaker 1: the some months. We'll tweak it, we'll fine tune it.
Speaker 1: We do that, I'm just still not better. I'm like
Speaker 1: marginally more energetic. But my thyroid labs now look optimal,
Speaker 1: this other autoimmune activity has gotten better, and yet I'm
Speaker 1: just still incredibly sick. And so that's when, in a sense,
Speaker 1: the deepest part of my quest began, and I began
Speaker 1: to understand that whatever was wrong with me was not
Speaker 1: going to be a single label for which I could
Speaker 1: take a single medication, you know, and get better.
Speaker 4: Yeah, this conversation comes for me. Not to long after,
Speaker 4: I had a conversation with another writer and she wrote
Speaker 4: a book about getting seven different mental health diagnoses over
Speaker 4: the course of her adult life, and it really speaks
Speaker 4: to this idea of how difficult it is when your
Speaker 4: symptoms are not straightforward and they seem to potentially fall
Speaker 4: into a whole lot of different categories. And you know,
Speaker 4: she ultimately got to the point with her where she
Speaker 4: did not want and does not want diagnoses.
Speaker 3: She doesn't want to know.
Speaker 4: And you talk about this a little bit about you know,
Speaker 4: we can look at diagnoses twofold. We can look at
Speaker 4: them sometimes they are very very helpful and encouraging because
Speaker 4: they allow us to go, Okay, there's a name for
Speaker 4: what I've got, and they can give us hope. We
Speaker 4: also know that the flip side of them can be
Speaker 4: they can be stigmatizing, they can limit us. But I
Speaker 4: also think there's a third element that we don't talk
Speaker 4: a lot about, which is sort of what you just
Speaker 4: referred to, which is we get a diagnosis, it gives
Speaker 4: us some degree of hope that things are going to
Speaker 4: get better, and then they don't, and now it's even
Speaker 4: more confusing.
Speaker 1: Absolutely, I mean, diagnosis is so complicated. So as you
Speaker 1: just heard, for me, that initial diagnosis really did bring relief.
Speaker 1: And I talk about this in my book, which is
Speaker 1: I really didn't want a diagnosis, right, And I think
Speaker 1: in my case it was because I, in a way,
Speaker 1: it's a flip side of your other guests story where
Speaker 1: I was having these symptoms that I was really convinced
Speaker 1: had some kind of origin that we're not in mental health, right,
Speaker 1: and I was being met with the sort of reflexive
Speaker 1: it's anxiety. Now. I hope we do talk about the
Speaker 1: ways in which all this is intertwined. And I think
Speaker 1: it's really important to talk about mental health in chronic
Speaker 1: illness and anxiety and depression in chronic illness. But you know,
Speaker 1: as someone who had undergone on a kind of mild
Speaker 1: depression in the past, this just felt so different, and
Speaker 1: it had so many very concrete symptoms that were very
Speaker 1: very physical, and I really had the intuition and that's
Speaker 1: really what it was, that something was being overlooked. And
Speaker 1: so that is the first piece of why I think
Speaker 1: diagnosis can matter for what a're often called invisibly ill
Speaker 1: patients with things like autoimmune disease, because it does help
Speaker 1: validate and categorize your experience, right in a world in
Speaker 1: which no one wants to make accommodations for you where
Speaker 1: everyone is like, why are you canceling dinner yet again?
Speaker 1: Even your friends, right, But I completely agree that in
Speaker 1: a way, with the book Charts is the journey from
Speaker 1: that moment when I get the debt first diagnosis, to
Speaker 1: a kind of understanding that diagnosis is just a small
Speaker 1: piece of the journey, and that the actual work of
Speaker 1: living with a disease is to live with the disease
Speaker 1: in whatever form it takes, the illness, the manifests of it,
Speaker 1: the many ways in which it's individual, and it doesn't
Speaker 1: you know, exactly map onto someone else's experience with the
Speaker 1: same set of of diagnosis, and then finally to your
Speaker 1: third point, which is so important. I think one thing
Speaker 1: that really inhibited me was that it felt unlikely that
Speaker 1: I would have multiple diagnoses, right, and so I did
Speaker 1: kind of stop looking. And that was a hindrance too,
Speaker 1: because actually there was more going on, and the kinds
Speaker 1: of conditions I write about in my book often there's
Speaker 1: more than one of them, and they coexist, and this
Speaker 1: is part of the framework I'm really trying to unpack
Speaker 1: and show, because I think at the time I kept thinking, God,
Speaker 1: maybe this all is in my head. How could I
Speaker 1: have so many things wrong with me? Right? Does that
Speaker 1: make sense totally?
Speaker 4: Yeah. Let's talk a little bit about this idea of
Speaker 4: invisible illness that you talk about. You say, the less
Speaker 4: we understand about a disease or symptom, the more we
Speaker 4: psychologize or often stigmatize it.
Speaker 1: Yeah. So this is an idea I really borrow from
Speaker 1: the writer Susan Sontag, who wrote a really great book
Speaker 1: published in nineteen seventy eight called Illness as Metaphor that
Speaker 1: interestingly was occasioned by her own experience of breast cancer.
Speaker 1: But in the book, she doesn't even write about herself.
Speaker 1: She just writes about the fact that there are all
Speaker 1: these diseases that we don't understand well that we make
Speaker 1: kind of elaborate stories about. So, tuberculosis was once thought
Speaker 1: to be a disease of romantic young souls, Okay, and
Speaker 1: then over time we realize the bacteria causes it. But
Speaker 1: it's not until we have a treatment for TB that
Speaker 1: we stopped thinking of it as a disease that is
Speaker 1: somehow connected to a particular psychology. She makes the same
Speaker 1: case about breast cancer that you know, it was one
Speaker 1: thought to be repressed emotions were causing breast cancer, and
Speaker 1: she really objects that. So part of what I was
Speaker 1: interested in this book is the ways in which I
Speaker 1: think that these invisible illnesses that are driven by immune dysfunction,
Speaker 1: that by the way, impact every part of the body,
Speaker 1: including the brain. Often we're being psychologized and stigmatized in
Speaker 1: ways that reduced their complexity and rendered them further invisible.
Speaker 1: And I think also importantly let society off the hook
Speaker 1: thinking about them, worrying about them, helping treat them, and
Speaker 1: researching them, which is to say, there was this kind
Speaker 1: of reflexive and it self stigmatizing idea that these people
Speaker 1: are mentally ill, and so we're putting them in this
Speaker 1: box and we're not thinking about these aspects of it,
Speaker 1: if that makes sense.
Speaker 4: Yeah, you talk about how from a medical perspective, we
Speaker 4: tended to go from broadly speaking, a time where we
Speaker 4: thought that disease was a condition of the person, a
Speaker 4: problem with the person, and then we've moved more into
Speaker 4: a model that says, hey, there's a germ, and you know,
Speaker 4: you treat the germ and then the problem gets resolved,
Speaker 4: and that both are sort of incomplete views.
Speaker 1: Yeah, so in my own experience of illness. What really
Speaker 1: interested me early on and confused me, to be honest,
Speaker 1: was that it was really clear that when I was
Speaker 1: more stressed or I had a really difficult week at
Speaker 1: work doing things maybe I didn't exactly want to do,
Speaker 1: or maybe I did want to do, but I wasn't
Speaker 1: feeling well enough to do them, so that I was
Speaker 1: worried about doing them. Those weeks I was much sicker
Speaker 1: than any other weeks. And so initially that to me
Speaker 1: was really a confounding factor, because I thought, God, does
Speaker 1: this mean that somehow it is all invented in my head? Right?
Speaker 1: There's maybe no illness, you know, organic illness as we
Speaker 1: call them, and it is something purely driven by anxiety.
Speaker 1: And it was only researching this book and really going
Speaker 1: through the journey for the next twenty years that taught
Speaker 1: me that there's this whole category of disease. We don't
Speaker 1: do a great job of thinking about. Which are diseases
Speaker 1: that are organic to use the term that helps define
Speaker 1: them as not exclusively in mental illness, and they have
Speaker 1: a clearer cut cause of some kind. We don't understand
Speaker 1: that cause very well. But they are also shaped by biography,
Speaker 1: by our lives by things like stress, by things like food,
Speaker 1: by things like sleep, and all these choices we make,
Speaker 1: and it's really hard for us to think and talk
Speaker 1: about these diseases.
Speaker 4: Yeah, you say, complicating germ theories, paradigm of a specific
Speaker 4: disease entity, or the infection that tidally resolves. Researchers are
Speaker 4: showing that much of health depends on the interplay between
Speaker 4: soil and seed host and infection with the immune system
Speaker 4: in one's microbiome is confounding factors. And as you just
Speaker 4: sort of added in there, I think our mental states
Speaker 4: are also another factor. So all of a sudden, we
Speaker 4: have these incredibly complex things going on that are very
Speaker 4: hard to tweeze apart. We all relate things back to ourselves,
Speaker 4: and so as somebody who's recovering from addiction and have
Speaker 4: worked with people recovering from addiction for a long time,
Speaker 4: addiction is such a complicated thing to reduce it to
Speaker 4: say well it's genetics. No, genetics probably have a role.
Speaker 4: It was the way you were raised, Well, yeah, that
Speaker 4: probably had a role. It's your social support, It's hundreds
Speaker 4: of things. Now again there is in your case, if
Speaker 4: we now extend that further into illness, there is actually
Speaker 4: probably to use the term an organic underlying or a
Speaker 4: germ component. But these things get so complicated.
Speaker 1: Yeah, absolutely, an addiction is a great analogy in many ways,
Speaker 1: I think. But you know, before modern medicine, all kinds
Speaker 1: of medical practices around the world, in pre modern medicine
Speaker 1: really thought about disease as the consequence of the encounter
Speaker 1: between something in the world. They didn't know what it was.
Speaker 1: They called it sometimes things like animalcules, and they had
Speaker 1: all these theories were bad wins, and also a specific
Speaker 1: person with a specific biography, right. They really thought of
Speaker 1: illness as biographical in some ways, in ways they could
Speaker 1: get us into trouble, right, but in ways that I
Speaker 1: think there's an important piece of that that we just
Speaker 1: left behind when we embraced germ theory and moved from
Speaker 1: this idea that the soil mattered to just that the
Speaker 1: seed mattered. And part of what I'm arguing in the
Speaker 1: book is that there's this emerging understanding of medicine and
Speaker 1: disease that I think we've seen vividly dramatized in the
Speaker 1: pandemic that shows us that we really need to think
Speaker 1: about both the soil and the seed disease is not
Speaker 1: just some abstract thing that happens to us and behaves
Speaker 1: exactly the same way in each of us. Even a
Speaker 1: virus behaves really differently in each of us. But for decades,
Speaker 1: medicine thought, the whole definition of germ theory is based
Speaker 1: on the idea that these things behave in almost exactly
Speaker 1: the same way in different bodies. That is turning out
Speaker 1: to be really not true, as we've seen, and I
Speaker 1: think it leads us to a really interesting set of
Speaker 1: but also philosophical questions about how do we reform healthcare
Speaker 1: and our discourses around medicine and sickness to accommodate the
Speaker 1: fact that our bodies aren't always these tidy containers that
Speaker 1: behave exactly like everyone else's.
Speaker 4: Yeah, like anybody who's sick, you sought help from all
Speaker 4: kinds of places. You know, anybody who's sick for a
Speaker 4: long time, you'll you'll turn over a whole lot of stones.
Speaker 4: Let's broadly say, though, to keep this simple, you did
Speaker 4: sort of traditional medicine and you did alternative medicine, and
Speaker 4: they both have different paradigms, and there is helpfulness in each,
Speaker 4: and there are things that I think are deeply problematic
Speaker 4: in each Let's start with conventional medicine and just talk
Speaker 4: a little bit about, you know, where some of your
Speaker 4: key frustrations were there, and what some of the real
Speaker 4: problems that you encountered were.
Speaker 1: There were things about conventional medicine that were really important,
Speaker 1: and there were things about it that kind of ended
Speaker 1: up helping me tremendously. But what I found along the
Speaker 1: way was that I realized at some point that I
Speaker 1: was in a body that lived at the edge of
Speaker 1: medical knowledge, and as a consequence, I would show up
Speaker 1: in a doctor's office and labs would not show a
Speaker 1: really clear cut pre existing pattern. They would show a
Speaker 1: lot of strange things by the way, I mean, it
Speaker 1: was showing up as something's going on, But doctors often
Speaker 1: would just not have the time, the energy, the bandwidth,
Speaker 1: the curiosity to explore this person who sickness looked really weird.
Speaker 1: And I think some of that's that were in a
Speaker 1: really bureaucratic system that has as its basic building block
Speaker 1: the fifteen minute appointment. I mean, how do you take
Speaker 1: a complex history. But the other problem was that these
Speaker 1: doctors were thinking of my body as if it were
Speaker 1: a car, right it was a body that was made
Speaker 1: up of discreete parts, and each person talked almost as
Speaker 1: if those parts were not interrelated and they were just
Speaker 1: there for the tune up the oil change. I couldn't see, like,
Speaker 1: here's the problem in the carburetor, and we know how
Speaker 1: to fix it. If I wasn't in crisis with a
Speaker 1: thing they could like really operate on and repair, they
Speaker 1: didn't know what to do with me. And I at
Speaker 1: this point needed not just answers but also help living
Speaker 1: with illness, and the absence of answers, and conventional medicine
Speaker 1: had really nothing to offer to me in terms of
Speaker 1: how to help me learn to live with this new reality.
Speaker 1: And no one ever asked the question, for example, what
Speaker 1: symptom is bothering you the most, Let's work together to
Speaker 1: figure out how we can improve your life by ten
Speaker 1: percent even if we can't fix the problem. That kind
Speaker 1: of discourse in exchange was just utterly missing from every
Speaker 1: single conventional medicine appointment I had, And so as a result,
Speaker 1: I'm sort of trudging from specialists to specialists. Each one
Speaker 1: takes more blood. It's stressful, exhausting, disheartening, dispiriting, right, and
Speaker 1: none of them are talking to each other. And this
Speaker 1: is before electronic medical records, so I was often fexing
Speaker 1: records from person to person. So it felt like I
Speaker 1: had just woken up in this pageantry of care that
Speaker 1: was really just this elaborate bureaucracy offering me something that
Speaker 1: wasn't what I needed.
Speaker 4: Yeah, and there's that whole element of when you're feeling
Speaker 4: really miserable and you wait a long time to see
Speaker 4: a specialist totally and you finally get in to see
Speaker 4: the specialist and then it's completely at best useless, and
Speaker 4: it worse, just insulting and all that. It's just it's
Speaker 4: so painful, you know.
Speaker 1: Oh, it's it's yeah, exactly.
Speaker 4: You have a really interesting point. You referred to it,
Speaker 4: I don't know five minutes ago, but I'm going to
Speaker 4: bring it back up. You said, doctors don't like to manage,
Speaker 4: they like to fix. And as you said, a lot
Speaker 4: of this dealing with a chronic illness is about management.
Speaker 4: And so we've got a healthcare system that is not
Speaker 4: designed in any way. There is no manager of your care. Ideally,
Speaker 4: your mary care physician would be this, but that's not
Speaker 4: broadly speaking, what most of them do that's not what
Speaker 4: they know how to do. And so you know the
Speaker 4: other thing you talk about is how quickly doctor's empathy wanes.
Speaker 1: Yeah, yeah, so we have this structural problem. I interviewed
Speaker 1: David Cutler, who's an economist who writes a lot about healthcare,
Speaker 1: and he said to me, you know something I wouldn't
Speaker 1: have known. He asked me who's the second highest paid
Speaker 1: person on a football team? And I was like, well,
Speaker 1: I don't know, and he said, first paid is the quarterback.
Speaker 1: Second is the coach. And he said that's because you
Speaker 1: need a coach to pull the choreography of all the
Speaker 1: moving parts together. What we lack in healthcare is the coach. Right.
Speaker 1: Primary care physicians they should be that, but that's not
Speaker 1: really how medicine is set up. It's unrealistic in the
Speaker 1: current situation to ask that of them. I think this
Speaker 1: was really startling. I started researching doctor patient relationships because
Speaker 1: it won't surprise you that I was really fascinated as
Speaker 1: a reporter, as a writer, as a to realize that
Speaker 1: when I was going to doctor's office that sometimes there
Speaker 1: was this kind of faint atmosphere of antagonism, right, which
Speaker 1: is really strange because it's called healthcare, and it was
Speaker 1: really noticeable, right, and there were reasons for it, and
Speaker 1: I think a lot of those reasons have to do
Speaker 1: with as it turns out, when you study doctors and
Speaker 1: empathy and healthcare workers and empathy, you find that doctor's
Speaker 1: empathy WANs alarmingly quickly when it gets measured, and it
Speaker 1: actually happens in med school, and it's almost a product
Speaker 1: by design in the way that med schools set up,
Speaker 1: where these students are sent out, you know, into the
Speaker 1: hospital to do their forget what it's called, it's not rounds,
Speaker 1: but that basically it's when they're apprenticing in all the
Speaker 1: different departments, and it's structured in a way such that
Speaker 1: they don't sleep and they're just exhausted. It's just kind
Speaker 1: of right of passage in med school. You're supposed to
Speaker 1: go through this. And what studies have shown is that
Speaker 1: that per transforms these eager, empathetic young medstins into burned
Speaker 1: out would be doctors who have stopped being able to
Speaker 1: empathize with their patients. So it's really clear that there's
Speaker 1: structural realities in how medicine is set up that conspire
Speaker 1: really to drain empathy from doctors. I don't think it's
Speaker 1: that non empathetic people want to be doctors. I think, right,
Speaker 1: the system does something to them. So this was pretty
Speaker 1: alarming to me, and it's pretty noticeable. And on the
Speaker 1: flip side of that, I will just say, what makes
Speaker 1: it even more alarming is that studies confirm what any
Speaker 1: of us lay people could tell them, which is that
Speaker 1: being cared for by a doctor actually makes us feel better. Right.
Speaker 1: I think any one of us who's been in an
Speaker 1: office knows that just viscerally totally. But when you stop
Speaker 1: and you measure outcomes, it's actually there. And the outcomes
Speaker 1: too that patients are, you know, pretty much impacted almost
Speaker 1: as powerfully by kindness and empathy as they are by
Speaker 1: some of the strongest medical drugs we have.
Speaker 4: My mother's been in and out of hospitals for the
Speaker 4: last number of years, and my partner's mom has Alzheimer's,
Speaker 4: and that level of care, when you get it, it
Speaker 4: really does make a huge difference.
Speaker 5: You know.
Speaker 4: I could just see it in my mom, you know,
Speaker 4: the difference when she's treated with kindness and respect and
Speaker 4: interest from a doctor versus when she's not. She's very different.
Speaker 4: You know the quality of her life is very different.
Speaker 1: Wow, so amazing. I mean it's so intuitive, but we've
Speaker 1: come to this point where we have to study it
Speaker 1: to prove it too.
Speaker 4: Right, Yeah, that's right, And to your point, a lot
Speaker 4: of this is not to vilify doctor. Right, we have
Speaker 4: a structural system set up in such a way that
Speaker 4: time isn't there, that the pressure is on all aspects.
Speaker 4: So we've got this conventional healthcare system we've talked about
Speaker 4: where you're sort of rushed in and out. There's less empathy,
Speaker 4: you're treated sort of like a car, you're sort of
Speaker 4: less than human. We're looking at things in isolation. And
Speaker 4: then you go all right, I've had enough of this,
Speaker 4: and you wander into alternative medicine and you bump up
Speaker 4: against very often something very very different.
Speaker 1: Feeling totally, I find it so challenging to talk about
Speaker 1: functional and alternative medicine. And by the way, there's a
Speaker 1: lot of there's this whole middle world too, called functional
Speaker 1: or integrative medicine, which yeah, often is you know, you're
Speaker 1: seeing mds people who have been trained in the Western system,
Speaker 1: and a lot of the people I saw had started
Speaker 1: as conventional doctors and gotten really disillusioned by what they
Speaker 1: were able to offer and had decided to study other modalities.
Speaker 1: It's really hard to talk about because there's so much suspicion,
Speaker 1: and often there's just you know, either people reflexibly hate
Speaker 1: alternative medicine or they reflexibly love alternative medicine, right, But
Speaker 1: I think there's a lot of us in the middle too,
Speaker 1: which is to say I came to it with a
Speaker 1: lot of skepticism. I just wasn't part of my childhood
Speaker 1: growing up. My parents were like, you know, you go
Speaker 1: to the doctor, or they help you, that's it, or
Speaker 1: they don't help you. But what I found was that
Speaker 1: I needed this care, this warmth, and I needed coaching.
Speaker 1: I needed someone to help me calmly sort through the
Speaker 1: many symptoms I was having to look really deeply at
Speaker 1: what was going on with me as a whole system,
Speaker 1: and to see how they could support me. I mean,
Speaker 1: I just needed that I was really falling apart physically.
Speaker 1: I was really sick, and that's what I got from
Speaker 1: alternative medicine. And did I see people along the way
Speaker 1: who I didn't trust and who I let sell me
Speaker 1: things that I, you know, don't think I really needed, Yes,
Speaker 1: but you know, what I found in integration of an
Speaker 1: alternative medicine was another model of the body, which was
Speaker 1: one that was more like a garden, right, which was
Speaker 1: a much more appealing model as a sick person, which
Speaker 1: is your body as this kind of ecology, it's all interrelated.
Speaker 1: If we tweak your sleep, or if we help your
Speaker 1: nervous system rest by giving you acupuncture and putting you
Speaker 1: into a calm state, it's going to help in ways
Speaker 1: we can't entirely measure. And that was true for me, right.
Speaker 1: It didn't magically cure me, but I would say that
Speaker 1: some of these modalities really helped me by twenty eight
Speaker 1: to forty percent. And the other thing they did was
Speaker 1: make me feel listened to, seen cared for, and in
Speaker 1: that sense they gave me the fortitude to continue and
Speaker 1: that sense of well being in my mind that I
Speaker 1: needed as well. If that makes sense.
Speaker 4: Yeah, So there's a lot of obvious benefits in the
Speaker 4: way care is delivered. I think to your point, the
Speaker 4: way we're sort of seen as whole systems. You know,
Speaker 4: my experiences with fun medicine have been largely positive. The
Speaker 4: things that you're describing and embedded in that world broadly speaking,
Speaker 4: there are some challenges. What would you say to you
Speaker 4: is sort of the biggest challenge embedded in that model.
Speaker 1: I think the biggest challenge is that, by virtue of
Speaker 1: what they are offering, which is a more individualized approach
Speaker 1: that goes beyond what evidence mace medicine can offer, there's
Speaker 1: not necessarily evidence for it, right, and if the building
Speaker 1: block of western or conventional medicine is this fifteen minute
Speaker 1: appointment in which the doctor can't offer care, in a way,
Speaker 1: the fundamental business model of some functional medicine integrated mess
Speaker 1: is that they don't take insurance and that they are
Speaker 1: offering you a lot of things that you are paying for.
Speaker 1: So what occurred to me along the way is that
Speaker 1: you know, of course, it's almost in their interest to
Speaker 1: make me feel I need a lot of supplements or
Speaker 1: tests or things, because that's sort of part of what
Speaker 1: they're doing, is that's how they function financially. But you know,
Speaker 1: you have to believe or hope at the end of
Speaker 1: the day that you're finding people you trust and feel
Speaker 1: that they're really helping you find you know, not twenty
Speaker 1: supplements twelve of what you don't need, but they're helping
Speaker 1: you in a more systematic, methodological way find the four
Speaker 1: supplements you do need. But I think that's the challenge, right,
Speaker 1: It's like you're in this kind of uncharted, unmeasured by
Speaker 1: definition territory and you really don't know whom to trust
Speaker 1: or who's good and who's not. You know, which, by
Speaker 1: the way, applies to to conventional medicine. But there you
Speaker 1: have the superstructure of the idea of evidence based care,
Speaker 1: whereas in this other world we're saying, you know, we
Speaker 1: can't really study acupuncture on large groups of people because
Speaker 1: the whole idea is that everyone behaves a little differently, right,
Speaker 1: which is true. Now that said, there's some really good
Speaker 1: studies of how acupuncture, by the way, does help in
Speaker 1: these immune mediated diseases that are pretty clear cut. But yeah,
Speaker 1: it felt a little like I was an explorer in
Speaker 1: uncharted territory.
Speaker 4: Yeah. The other thing I think that shows up in
Speaker 4: that world, and the way you refer to it, is
Speaker 4: it's in thrall to the idea that we control the
Speaker 4: outcomes of our lives. In the alternative health world, often
Speaker 4: through the case of self purification. This is where things
Speaker 4: like you know, the power of positive thinking starts to
Speaker 4: show up more, or it's all because your diet isn't
Speaker 4: quite right, Which is not to say that diet isn't
Speaker 4: a factor in things, because of course it's a factor
Speaker 4: in nearly everything. But I do think you start to
Speaker 4: run into this sense where you can a little bit
Speaker 4: instead of the germ being the fault, yeah, it's the
Speaker 4: way you're living is the fault, or the way you're
Speaker 4: thinking can be the fault.
Speaker 1: Yeah. And by the way, I really fell into this
Speaker 1: because I was having a lot of symptoms when I ate.
Speaker 1: I became very obsessed with my diet in ways that
Speaker 1: were ultimately very positive and helped me identify how to
Speaker 1: eat for my own personal health. But along the way,
Speaker 1: I realized at one point that I was a bit
Speaker 1: caged by it, that I was so scared of eating
Speaker 1: the wrong thing that I would almost make myself say
Speaker 1: from the anxiety of oh, no, I did eat an
Speaker 1: egg and I'm not supposed to right, and I would
Speaker 1: focus on it. But also one reason alternative medicine is
Speaker 1: persuasive and powerful is that we do all have the
Speaker 1: sense that there are things about contemporary life that are
Speaker 1: not that healthy right from our endless productivity and hyperconnectedness
Speaker 1: to car exhaust noise, pollution, to our food system. Like,
Speaker 1: it's true that all these things are not healthy. So
Speaker 1: when presented with this worldview that said, look, if you
Speaker 1: change these things, you might be able to get better,
Speaker 1: I wanted that to be the whole truth, right, and
Speaker 1: I wanted it to be utterly under my control because
Speaker 1: I could have control of that right purify myself. I
Speaker 1: could drink green juice all day long, I could eat massage, kale,
Speaker 1: salad and probiotics, and I could just will myself back
Speaker 1: to health. And in a funny way, I was still
Speaker 1: back in an old Western modern relationship to my body,
Speaker 1: but I had just replaced one set of you know,
Speaker 1: muscle through it with another set of muscle through it,
Speaker 1: which is muscle through it through self purification. And so
Speaker 1: that slowed me down and actually getting to the root cause,
Speaker 1: ironically of what was going on with me, because I
Speaker 1: think for a long time I personally just got a
Speaker 1: little bit hung up on maybe I can control this
Speaker 1: through kind of purifying myself.
Speaker 4: So this kind of leads us into the next area
Speaker 4: that I'd really like to talk about, because I think
Speaker 4: you write about it in really helpful and nuanced ways.
Speaker 4: And I think that's an important way to have this
Speaker 4: conversation because it is very nuanced, and it is really
Speaker 4: the role of emotions and thoughts and how they interact
Speaker 4: with physical sensations. We talked earlier lear about how we
Speaker 4: know that the care effect. When you're treated more kindly
Speaker 4: by your doctor, you have better outcomes. So there's a
Speaker 4: clear element there of like, Okay, something that's happening emotionally
Speaker 4: is translating to better outcomes. And this discussion tends to
Speaker 4: fall into one of two camps. One camp is you
Speaker 4: know the reason that you have breast cancer is because
Speaker 4: you have repressed emotions, or we go to the other
Speaker 4: extreme and we go, well, none of that stuff matters
Speaker 4: at all, and the reality is far more nuanced. Talk
Speaker 4: to me about sort of some of your journey through
Speaker 4: that world.
Speaker 1: Yeah, So it's such a hard thing to talk about
Speaker 1: because I think one thing that is worth saying is
Speaker 1: that our relationships as people who live with illness to
Speaker 1: these ideas probably fluctuates and changes too, right, And certainly
Speaker 1: my own did, Yeah, which is to say I existed
Speaker 1: in a somewhat paradoxical state at times and always still do.
Speaker 1: And that was that when people would say to me, well,
Speaker 1: maybe you're feeling sick because you're this kind of type
Speaker 1: A personality. You know, you're very hard working and you know,
Speaker 1: kind of perfectionistic, and you know it's always type A
Speaker 1: people who are sick. And I would really bridle at
Speaker 1: that because you know, it kind of put the responsibility
Speaker 1: for the illness and my suffering squarely on my shoulders,
Speaker 1: right well, meanwhile letting the observer totally off the hook,
Speaker 1: right and also reassuring them that maybe this couldn't happen
Speaker 1: to them because they weren't like me, whatever that meant. Right.
Speaker 1: So there's this kind of way you I think, as
Speaker 1: a sick person with an ill defined disease, which are
Speaker 1: many of them, you often encounter this reflexive way in
Speaker 1: which other people want to reassure themselves that they would
Speaker 1: never be in your shoes, because even if they got there,
Speaker 1: they could control it somehow through being less stressed. Right.
Speaker 1: But at the same time, as I already said, I
Speaker 1: was aware that stress was playing a role in my illness,
Speaker 1: and I could tell that, you know, my own habit
Speaker 1: of taking things very very seriously wasn't always helping me
Speaker 1: let go or relax. I could tell you know, I
Speaker 1: lived in New York. I was probably never relaxing, right,
Speaker 1: I was never sleeping enough. I was never figuring out
Speaker 1: how to just let go and really let the sort
Speaker 1: of restore and repair a part of my body and
Speaker 1: help nervous system kick in. So in the book, I
Speaker 1: set out to try to really think about these questions
Speaker 1: in a really transparent way. And part of what's challenging
Speaker 1: is that it's exactly what you've named. Because there's this
Speaker 1: reflexive desire to say that everything about an illness is
Speaker 1: caused by the mind. It's harder to have a nuanced
Speaker 1: conversation about okay. In fact, a lot of illnesses are
Speaker 1: caused by a germ, the combination of a genetic piece
Speaker 1: encountering a virus. But if that encounter happens at a
Speaker 1: moment when your mother dies, what else happens? How does
Speaker 1: that additional stress further shape and dimensionalize your illness? How
Speaker 1: does the fact that I had been bitten by a
Speaker 1: tick that had lime disease intersect with my life history
Speaker 1: in ways that lead my illness story to go kind
Speaker 1: of gradually downhill and then suddenly downhill, right, and I
Speaker 1: became really interested in that conversation that piece, and I
Speaker 1: turned to a lot of reading that shows really clearly
Speaker 1: by the way that there's this entanglement, it's kind of
Speaker 1: beautiful entanglement in a way of the immune system and
Speaker 1: the nervous system, which makes it really clear that when
Speaker 1: your nervous system is stimulated in certain ways, your immune
Speaker 1: system changes, and when your immune system changes in some ways,
Speaker 1: your nervous system changes, so that if you are in
Speaker 1: a world of ever constant stress, it's just more likely
Speaker 1: that things are going to go wrong in the very
Speaker 1: beautiful dance of immune regulation that we're all experiencing all
Speaker 1: day long, with the immune cells changing and coming and going.
Speaker 1: But second, I stumbled on this fascinating work of a
Speaker 1: woman at Harvard named Ellen Langer, who really looks at
Speaker 1: how expectations shape our biology. And what she found is
Speaker 1: that expectations really do shape our biology, but not in
Speaker 1: a vague power of positive thinking kind of way. Right.
Speaker 1: It's more that when we really are convinced of the
Speaker 1: reality of something, when we authentically and fully experience a
Speaker 1: reality that impacts us, what's harder to control is using
Speaker 1: our mind to persuade ourselves of the authentic reality of something. Right,
Speaker 1: does that distinction make sense? It's really important. So you
Speaker 1: can't be a person who's allergic to horses walk into
Speaker 1: a barn and just say I'm not allergic to horses.
Speaker 1: I'm not allergic to horses. I'm positively thinking about horses.
Speaker 1: That's not what she's saying. That's not gonnaness the work.
Speaker 1: She says, Actually, you just shouldn't go into the bar. Right.
Speaker 1: You should find those triggers and avoid them. But you
Speaker 1: should be aware of the ways of which your mind
Speaker 1: is contributing to creating situations, and you can in some
Speaker 1: ways set up situations in which you try to authentically
Speaker 1: be encountering joy. For example, the telling example she gives
Speaker 1: is a study she calls the counterclockwise study, where she
Speaker 1: takes a lot of older people and she brings them
Speaker 1: to a place where there's two groups, and one group
Speaker 1: is treated as if they're thirty years younger than they are.
Speaker 1: The old group is met at the door and people say,
Speaker 1: please let me take your bag, let me help you
Speaker 1: up the stairs, or your knees okay, et cetera, et cetera.
Speaker 1: The other group, no one helps them. Everyone's like your
Speaker 1: room is there. In their rooms, they're playing music from
Speaker 1: thirty years ago. They can only watch TV shows from
Speaker 1: thirty years ago. At the end of the week, that
Speaker 1: group has completely different biomarkers pain levels than the gutter group, right,
Speaker 1: which tells you something. But what exactly that's the problem
Speaker 1: for all of us.
Speaker 5: What exactly does this mean?
Speaker 4: Hey, friends, it's Eric. Let's talk about something hard. How
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Speaker 4: the moment of choice came, something pulled you in the
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Speaker 4: and when we keep failing at them, it doesn't just
Speaker 4: derail our goals. It chips away at something deeper, our
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Speaker 4: I think what you speak to there is so important too,
Speaker 4: which is that it's the things that we really believe
Speaker 4: that do have an impact. It's just that we then
Speaker 4: get caught up in trying to think that we could
Speaker 4: get ourselves to believe something. I've read studies about do
Speaker 4: affirmations work or not. Anything that's from the psychological study
Speaker 4: world you've got to take with a grain of salt,
Speaker 4: because we've got replicability issues and all kinds of things.
Speaker 4: But what it seems to point to is that it's
Speaker 4: sort of a cruel thing, and that affirmations work for
Speaker 4: people who need them the least because they actually believe them.
Speaker 4: So the affirmation that works for you is one that
Speaker 4: you actually believe. So if you can work to find
Speaker 4: an affirmation that you can believe. You know, I might
Speaker 4: find an affirmation that says I tend to work hard
Speaker 4: most days, and I might go, yeah, I do believe that.
Speaker 2: And that's going right.
Speaker 4: On the other hand, I can't make myself believe something
Speaker 4: I don't. It's the cruelty of positive thinking sometimes is
Speaker 4: that it's just like, well, if you just thought positive.
Speaker 4: The reality is, if you really thought that way, really
Speaker 4: felt that way, sure there's benefits. You've got a line
Speaker 4: in the book. I don't think I have it in
Speaker 4: my notes. I wish I did. But you basically talk
Speaker 4: about just the grinding weight of trying to keep this
Speaker 4: sort of constantly positive mood and then all of a
Speaker 4: sudden you're in this sort of mental mind f of,
Speaker 4: oh my god, I'm thinking something negative. I'm terrible, Like
Speaker 4: what just is this tough place? And yet, as we say,
Speaker 4: you can't sort of completely say, well, your mind and
Speaker 4: emotions don't play a role. So it's another form of
Speaker 4: self purification in a mental sense.
Speaker 1: Totally totally, and it's another place where I think those
Speaker 1: who including us, those of us who are experiencing sickness
Speaker 1: or things that we're trying to get over and those
Speaker 1: around us. It's another place we want to believe works.
Speaker 5: Right.
Speaker 1: I can't tell you how many people gave me John
Speaker 1: Sarno's book Healing Back Pain, because it works for some
Speaker 1: people to tell themselves, lah, but it didn't work for me,
Speaker 1: and they didn't believe it. They thought that still I
Speaker 1: was not doing it right, and I was like, no,
Speaker 1: trust me, I've tried. It did help with my neck
Speaker 1: pain a little bit, but it didn't help with all
Speaker 1: these other symptoms. Right. So clearly there is this whole
Speaker 1: mysterious world of the genuine interconnection of our minds and
Speaker 1: bodies in ways that are like profounding, wild, sublime, even terrifying,
Speaker 1: but we want to reduce it to the most packaged,
Speaker 1: kind of least threatening version of itself. And this is
Speaker 1: really different. But I'll give you an example that I'm
Speaker 1: going to botch slightly. But there's some evidence that when
Speaker 1: a mother dies who's carried children in her body, that
Speaker 1: her children are more likely to get autoimmune disease, that
Speaker 1: something about their immune cells changes after their mind, I mean,
Speaker 1: which is just like, so clearly there's these wild interconnections
Speaker 1: that should fill with awe and awe is the knowledge
Speaker 1: that we don't understand, as opposed to the desire to say, Okay,
Speaker 1: just think your way out of this cancer, right, that's
Speaker 1: not the path here, I don't think.
Speaker 3: Yeah.
Speaker 4: It gets to also an area I am really interested in,
Speaker 4: which is how free are we to make different choices
Speaker 4: based on our particular mental landscape? You know, you go
Speaker 4: back to addiction. On one hand, it is absolutely true
Speaker 4: that the alcoholic or the addict is the one who
Speaker 4: has to make the choice not to pick up the drugs. Right.
Speaker 4: I also know that having sitting fifteen years sober today
Speaker 4: or so and one day sober fifteen years ago, the
Speaker 4: degree of choice that I feel like I had is
Speaker 4: radically different. It's not the same thing to just say, like,
Speaker 4: what was my choice? Well, yes, that's true, and I
Speaker 4: have a whole lot more choice today than I had then,
Speaker 4: for a whole bunch of different factors, for a whole
Speaker 4: bunch of different reasons. And so when we start to
Speaker 4: talk about positive thinking, I think it's pretty obvious there
Speaker 4: are some people that just comes pretty natural too. Yeah,
Speaker 4: And then there are others of us, like ere who's
Speaker 4: conducting the interview over here, who you know, it's a
Speaker 4: harder battle for me. Yeah.
Speaker 1: Absolutely. And also I think in both illness and addiction
Speaker 1: and any of these conditions that we're talking about that
Speaker 1: are embodied physically and psychologically, right, there's a journey we
Speaker 1: go on. It's not the journey we think we're going on. Right,
Speaker 1: I think there's something fundamental that fifteen years probably took
Speaker 1: you places that you could not have anticipated. Right, in
Speaker 1: some ways that aren't tidy, that aren't exactly a script
Speaker 1: that anyone could have handed you. And the same is
Speaker 1: true in these illnesses, right, and yet we want, for
Speaker 1: understandable reasons to kind of tidy the script.
Speaker 4: Yeah.
Speaker 1: Does that may make sense as a metaphor tidy the script?
Speaker 1: I don't know, but you know what I mean.
Speaker 4: Yeah, we want easy answers. I mean we want easy
Speaker 4: as it's hard. It's really hard, and particularly when you're suffering.
Speaker 4: You know, when you're suffering, you want like think this,
Speaker 4: drink this take that, you know, like we just want
Speaker 4: to be better. I want to dive a little deeper
Speaker 4: into this idea of emotions and thoughts and physical symptoms.
Speaker 4: We've had a woman on the show a couple times.
Speaker 4: She's a Buddhist teacher, name's Tony Bernhard. She's lived with
Speaker 4: chronic illness chronic pain, and she described this in a
Speaker 4: way that I thought was one of the best ways
Speaker 4: that i'd heard it described, and I think it's really interesting.
Speaker 4: She said, you know, if I'm talking about chronic pain,
Speaker 4: I can determine there's sort of three elements here. Element
Speaker 4: one is the physical sensations of pain. Element two is
Speaker 4: sort of my level of resistance to those things, how
Speaker 4: much I'm fighting against it. And then the third element
Speaker 4: is sort of all the stories I'm telling myself about
Speaker 4: what this thing means. And her point is the first
Speaker 4: one obviously we may or may not be able to
Speaker 4: do anything about, right. You assume you're doing what you
Speaker 4: can do. You go to the doctor, you've got a
Speaker 4: chronic pain. And the other two we've got a little
Speaker 4: bit more control over. And think that that makes a
Speaker 4: certain type of sense. Although, as you and I have
Speaker 4: just been saying, like element two and three in there,
Speaker 4: it's not like we have complete control over it's not
Speaker 4: as easy just going well, I'll just think positive, right,
Speaker 4: but we have the ability to work with it emotionally.
Speaker 4: You described that when it came to your chronic pain,
Speaker 4: that you were able to sort of work with it
Speaker 4: a little bit easier in the way that I'm describing
Speaker 4: you are sort of able to separate it out into
Speaker 4: its little elements, but that when you got into some
Speaker 4: of your other symptoms, things like brain fog or tiredness,
Speaker 4: that that was much harder to do. So I guess
Speaker 4: I'll first ask you what do you think about sort
Speaker 4: of breaking it into those three categories, and then secondly
Speaker 4: share sort of what worked for you when it came
Speaker 4: to pain that didn't work in other areas.
Speaker 1: So, yeah, I know Tony Bernhard's work, and I think
Speaker 1: that's a really important observation. You know, again with the
Speaker 1: caveat that we don't control it all. But I thought
Speaker 1: a lot about Buddhism, and I read a fair amount
Speaker 1: when I was really sick, and I would add to
Speaker 1: her three categories a fourth, which is what the world
Speaker 1: is throwing at you. Oh yes, because speaking for myself,
Speaker 1: I'm in pain every day. But when like I'm just
Speaker 1: dealing with someone who not just greats on me, but
Speaker 1: I think like represents everything wrong in the world, it's like,
Speaker 1: you know what I mean, those kinds people are like,
Speaker 1: this is this is not what we need, my pain
Speaker 1: gets harder to tolerate, right, Or then think about Okay,
Speaker 1: that's a trivial example. Think about someone who's got two
Speaker 1: young kids and is the father worried about providing for
Speaker 1: them and losing his job, and how that exacerbates the pain. Right.
Speaker 1: That's not just a story he's telling himself. That's a
Speaker 1: story the culture is imposing on him. So I do
Speaker 1: think part of the work in my book is to
Speaker 1: try to add that fourth piece in and say, we
Speaker 1: got to all pause and and talk about ourselves, but
Speaker 1: also talk about what's coming at us. Right in terms
Speaker 1: of pain. It's a really interesting thing because pain is
Speaker 1: a signal, right. It's a signal that creates an affect
Speaker 1: or a feeling. And there was a moment that I
Speaker 1: described in the book where I was in so much
Speaker 1: pain I thought I was going to die, and I
Speaker 1: remember just stopping and thinking, Okay, I'm just going to
Speaker 1: observe this. This is just something that's happening to me.
Speaker 1: That's how I'm going to survive it. It didn't make
Speaker 1: the pain less bad, but it made time change a
Speaker 1: little bit, and it gave you that little degree of
Speaker 1: this too shall pass that I needed in that moment.
Speaker 1: So I do think that one of the things we
Speaker 1: also don't talk about in terms of pain is where
Speaker 1: is it and how does it impact you? And how
Speaker 1: does that become part of the story, So that what
Speaker 1: enters with pain is fear, right, fear that it won't
Speaker 1: go away, fear that it will come back, fear that
Speaker 1: it will come back just when you can't afford for
Speaker 1: it to come back. So, you know, I think in
Speaker 1: my life, one thing I've been able to identify in
Speaker 1: terms of pain and then even these other symptoms is
Speaker 1: the role that fear and lack of control play and
Speaker 1: my own intense desire for control, you know. And while
Speaker 1: I could learn to manage pain, what was really hard
Speaker 1: to learn to manage, as you said, was fatigue and
Speaker 1: brain fog because those things were at the very center
Speaker 1: of my perceptual being and they made it hard to
Speaker 1: apply effort to anything. Whereas if you think about what
Speaker 1: we're talking about, pain part of what we're doing, it's
Speaker 1: sort of a cognitive effort, right, You're having to be
Speaker 1: effortful about at least moving to that place where you're
Speaker 1: practiced at Okay, I'm breathing through this, whatever it is
Speaker 1: you need to do. But what brain fogs did was
Speaker 1: made it hard to even muster that effort. So you're
Speaker 1: just in this kind of morass that is really hard
Speaker 1: to visualize how you're going to keep surviving it because
Speaker 1: you don't even have the meaning of making meaning of it.
Speaker 1: Right that said, what I can say is that now
Speaker 1: in my life, you know, I talk about this in
Speaker 1: the book. I'm not better in the traditional sense of
Speaker 1: the world, but I'm not as afflicted as I was
Speaker 1: in a lot of days. I'm sort of in the
Speaker 1: sixty to eighty percent range. And there will be periods
Speaker 1: where those symptoms return, fatigue in particular, brain fog, and
Speaker 1: it's really scary, and I can let that symptom exist,
Speaker 1: and then this whole story starts to tell. Right my
Speaker 1: brain turns, the story begins, and I think, oh my god,
Speaker 1: here I go. I'm sliding down this path. I'm never
Speaker 1: going to get better, my children, what will happen my job?
Speaker 1: You can really start to catastrophize. And one of the
Speaker 1: things I talk about in the book is that I
Speaker 1: think the chronically ill patient has to live in a
Speaker 1: dual reality in which she's both insistent on the reality
Speaker 1: of her disease when she needs to be, and advocates
Speaker 1: for herself and takes the time to, you know, off
Speaker 1: when you need to, but also resist her own most
Speaker 1: catastrophic fears, right, And you have to work in that
Speaker 1: sweet spot somehow. And it's very much what Tony Bernhard
Speaker 1: is talking about of identifying the reality, living with it,
Speaker 1: observing it, and time becomes this really complicated piece and
Speaker 1: chronic illness because you know it's going to come again, right,
Speaker 1: So some part of you is always waiting, even on
Speaker 1: the good days, what's going to happen.
Speaker 4: Yeah. It makes me think a little bit about depression,
Speaker 4: and I don't even know how to talk about it anymore.
Speaker 4: I don't sort of back to labels and diagnosis and
Speaker 4: all that. I've studied a lot in Buddhism. And Buddhism
Speaker 4: we talk a lot about using the energy of the
Speaker 4: emotion to be transforming, and I'm like, yeah, okay, that's great,
Speaker 4: except when you're dealing with an emotion that has zero energy,
Speaker 4: like anger. Okay, that yeah, I could see harnessing anger.
Speaker 4: I can even see harnessing sadness. But when there's nothing, Yeah,
Speaker 4: it's more of a challenge to work with nothing, and
Speaker 4: that's what brain fog and fatigue are. They're nothing totally,
Speaker 4: or there's something that's so amorphous is to be nothing.
Speaker 4: So let's talk a little bit about healing. You ask
Speaker 4: in the book what does it mean for a chronically
Speaker 4: ill patient to heal? You say, in some cases it
Speaker 4: may be a remission of disease, but in others it
Speaker 4: means the patient is now able to manage the illness
Speaker 4: with some degree of integrity. What do you mean by
Speaker 4: that word integrity?
Speaker 1: What I mean is what I was just talking about
Speaker 1: about advocating for yourself, accepting. You know, acceptance overused sort
Speaker 1: of buzzword, But this goes back to what we were
Speaker 1: just talking about. I think when I was first sick,
Speaker 1: I just wanted to get better, and I meant better
Speaker 1: in the way that well people mean better. I just
Speaker 1: wanted this illness to go away. I wanted to go
Speaker 1: back to the person I had been. I wanted to
Speaker 1: forget this chapter had ever been part of my life
Speaker 1: and just be living in this other sort of delusional
Speaker 1: story in which you know, I was this intact person
Speaker 1: who is just going to keep living my life as
Speaker 1: I thought it might unfold as a person in her twenties,
Speaker 1: and so part of the travels the quest that I
Speaker 1: went on, I thought I was going on a quest
Speaker 1: to recover, but actually the quest took me in places
Speaker 1: that were more about learning to live with limitations. Again,
Speaker 1: that can sound sort of jargoning and easy to say,
Speaker 1: but I think anyone who's really done it knows how
Speaker 1: hard it is and how real the work behind that
Speaker 1: language is. So part of what I mean is that
Speaker 1: integrity of not denying the very condition you have, but
Speaker 1: living with it with some integrity in which you have
Speaker 1: come to, if not accept fully acknowledge, I guess, the
Speaker 1: reality that your body is not working in the way
Speaker 1: you hoped it would, and that your body is shaped
Speaker 1: by limitations, as are all of ours. But in this
Speaker 1: way that's brought a kind of heightened knowledge to you,
Speaker 1: and that you're able to both advocate for yourself and
Speaker 1: that you have people who see and validate that reality
Speaker 1: that you have now acknowledged. I think that's the key.
Speaker 1: Other piece is you can't live in integrity unless you
Speaker 1: have that doctor or that physician, that acupuncturist, whoever it is,
Speaker 1: that friend who really sees and validates and understands that reality.
Speaker 4: Yeah, you talk about healing being thought of in a
Speaker 4: sense of wholeness. You say, a patient is healed that
Speaker 4: is not solely by steroids or antibiotics, but also by nature,
Speaker 4: thrilling conversations, touch, empathy, being made to feel whole rather
Speaker 4: than distraught as she exits doctor's appointments.
Speaker 1: Yeah, exactly right. I mean, you can be a sick
Speaker 1: person whose life is you know, quote unquote limited, but
Speaker 1: you can have incredible amounts of joy and these thrilling Right,
Speaker 1: what is healing. It doesn't mean that I can do
Speaker 1: whatever I want, but it means that I have the
Speaker 1: possibility of joy. I think for me, and when I
Speaker 1: had the worst brain fog and fatigue, that wasn't there
Speaker 1: because also so no one saw it, and so there
Speaker 1: was never the sense that I might experience a reprieve.
Speaker 4: Yeah. There's an old Buddhist story of a person who
Speaker 4: is being chased by a tiger and they come to
Speaker 4: the edge of a cliff and they start climbing down
Speaker 4: the cliff on a vine and they've got a tiger
Speaker 4: above them, and there's a tiger below them, and it's
Speaker 4: a two hundred feet fall, and you know, a mouse
Speaker 4: comes out and starts gnawing on the vine, and at
Speaker 4: the same moment they see a beautiful strawberry right there, right,
Speaker 4: And I love that story because I think that speaks
Speaker 4: to what we're talking about, Like chronic illness makes it
Speaker 4: more clear that you've got a tiger above you, a
Speaker 4: tiger below you. That vine is getting gnawed on. But
Speaker 4: that's everybody's life to some degree, right. Your mom is sick,
Speaker 4: your dad is sick, your dog is sick, you're sick,
Speaker 4: you got laid off from your job, your lover left you.
Speaker 4: Life is just filled yeah with this, and then there
Speaker 4: are these strawberries. Let's wrap up here because I know
Speaker 4: we got to go, but I just real quick want
Speaker 4: to ask a question about something you call the wisdom narrative,
Speaker 4: which is, you know, we have this narrative. You say
Speaker 4: that stories we tell about illness are almost entirely about
Speaker 4: overcoming it. But if an illness can't be overcome, we
Speaker 4: have this story about we grow wiser as a result
Speaker 4: of suffering, right, Which there's truth in that, but there's
Speaker 4: more nuance to it than just that. Can you say
Speaker 4: a little bit about that kind of as a way
Speaker 4: of wrapping up.
Speaker 1: You know, it's really hard. This is another chapter where
Speaker 1: I tried to get at something nuanced and say, I
Speaker 1: think there is a way in which wisdom comes what
Speaker 1: you were just talking about, the knowledge that, of course
Speaker 1: this is all imperiled. We're all imperiled, and we've got
Speaker 1: to just look at those strawberries. I think I say
Speaker 1: this in the book, or maybe I didn't in the end,
Speaker 1: but you know, life is a lot funnier to me
Speaker 1: now than it was before I was sick, because why not, right,
Speaker 1: why not look for those strawberries and those moments of
Speaker 1: joy in different ways. But what I wanted to really
Speaker 1: point out was the ways in which the society around us,
Speaker 1: whether you're chronically ill. I'm sure this is true. Addiction too,
Speaker 1: exacts a kind of moral tax, right in order to
Speaker 1: have to think about your suffering. It wants to get
Speaker 1: something back from you, which is the performance of moral grace,
Speaker 1: the performance of triumph over adversity, the idea that it
Speaker 1: was somehow worth it, because in the end you've been enlightened.
Speaker 1: And what I objected to is the reflexiveness of that again,
Speaker 1: and what I want to point out is that many
Speaker 1: of us might not choose to have gone through We
Speaker 1: hear it all the time. By the way, Oh I
Speaker 1: would never thank God I did go through this, right, No,
Speaker 1: screw that. I wish I had not gone through this.
Speaker 1: I mean I really do, but I did. So, you know, Okay,
Speaker 1: So now what But that should be on my terms
Speaker 1: and not other people's terms, right, It shouldn't be that
Speaker 1: those of us who experience these things are kind of
Speaker 1: asked by society. There's a sociologist who is a really
Speaker 1: famous sociologist of illness and talks about like how inspiring
Speaker 1: it is watch people suffer with moral grace. And I
Speaker 1: was like, well, but what if you can't suffer with grace? Right?
Speaker 1: What you are caring for six children and you've lost
Speaker 1: your job, like no one there's no great disability out
Speaker 1: there for you. So you know, that's a lot to
Speaker 1: ask of that person. So that's what I'm trying to
Speaker 1: unpack and say. You know, I think wisdom does come.
Speaker 1: The word itself is a fascinating word. Nimologically, it's connected
Speaker 1: to the word doom, right, And I think in the book,
Speaker 1: I talk about the idea that Okay, wisdom is something
Speaker 1: you get from the encounter with doom. But an encounter
Speaker 1: with doom leaves its claw marks on you too, right,
Speaker 1: And it's complicated. It's just again one of these really
Speaker 1: complicated things that we need to talk about in different ways.
Speaker 4: I think, yeah, well, thank you so much. Like I said,
Speaker 4: I really loved the book. Beautiful writing, lots of great insight.
Speaker 4: That's not you know, as we've said, sort of not
Speaker 4: bubblegum insight, but true deep reflection on a real difficult situation.
Speaker 4: So thank you so much for taking the time to
Speaker 4: come on. I've really enjoyed getting to spends some time
Speaker 4: with you.
Speaker 1: Thank you so much. I've really enjoyed this conversation and
Speaker 1: look forward to listening to many more. And thanks again.
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