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