Episode Transcript
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Speaker 1 (00:00):
How do we reform healthcare and our discourses around medicine
and sickness to accommodate the fact that our bodies aren't
always these tidy containers that behave exactly like everyone else's.
Speaker 2 (00:19):
Welcome to the one you feed Throughout time, great thinkers
have recognized the importance of the thoughts we have, quotes
like garbage in, garbage out, or you are what you think,
ring true, and yet for many of us, our thoughts
don't strengthen or empower us. We tend toward negativity, self pity, jealousy,
(00:39):
or fear. We see what we don't have instead of
what we do. We think things that hold us back
and dampen our spirit. But it's not just about thinking.
Our actions matter. It takes conscious, consistent, and creative effort
to make a life worth living. This podcast is about
how other people keep themselves moving in the right direction.
Speaker 3 (00:59):
How they feed their good wolf. Thanks for joining us.
Our guest on this episode is Meghan O'Rourke, a journalist, poet,
(01:20):
and New York Times bestselling author. Her work often tackles
challenging subjects like grief, illness, and more. Megan's previous books
include the best selling memoir The Long Goodbye, and the
acclaimed poetry collections Sun and Days, Once and Half Life.
She's passionate about advocating for those living with chronic illness,
(01:40):
and as a recipient of the Guggenheim Fellowship in many
other awards. Today, Megan and Eric discuss her book, The
Invisible Kingdom, Reimagining Chronic Illness.
Speaker 4 (01:50):
Hi, Megan, welcome to the show.
Speaker 1 (01:52):
Thanks, Eric, it's so good to be here.
Speaker 4 (01:53):
Yeah, I'm excited to discuss your book with you. It's
called The Invisible Kingdom, Reimagining Chronic Illness. Yes, but before
we get into that, let's start like we always do
with the parable. There's a grandparent who's talking with their
grandchild and they say, in life, there are two wolves
inside of us that are always at battle. One is
a good wolf, which represents things like kindness and bravery
(02:15):
and love, and the other's a bad wolf, which represents
things like greed and hatred and fear. And the grandchild
stops and thinks about it for a second and looks
up at their grandparents says, well, which one wins? And
the grandparent says, the one you feed. So I'd like
to start off by asking you what that parable means
to you in your life and in the work that
(02:36):
you do.
Speaker 1 (02:36):
It's such a rich parable, and I think there's all
kinds of ways we'll dig into things today that back
to that parable. But I very quickly just think about
how it reminds us that our expectations shape our lives,
and our expectations shape our stories. And I'll just quickly
say that I think that's true for cultures as well
(02:56):
as people, And so I'm thinking a lot about that
story as it applies to our culture at large, as
well to each of us individually.
Speaker 4 (03:04):
As we talk about illness from a lot of angles,
there's certainly a cultural angle to the way we look
at illness. But maybe start off telling us a little
bit about your journey of chronic illness in you know,
maybe the three minute version. I know you wrote a
whole book about it, but just to sort of paint
the broad picture for people, and then we can kind
of drill down into deeper areas.
Speaker 1 (03:26):
Absolutely, the three minute version is hard to tell, because I,
in fact got sick gradually and over the course of
many years. But I can say that basically I was
sick for more than a decade before I got any
kind of diagnosis, right, So I was living in this period,
in fact, really almost fifteen years of living with no
name for the suffering that I was undergoing. And my
(03:49):
symptoms were really ones that roamed the body, and early
on at least came and went. When I got really sick,
they were pretty unrelenting. But when my twenties, you know,
basically I just start feeling tired and fatigued and having
strained neurological symptoms like electric shocks and joint pain, and
over time ended up with not one diagnosis, but a
(04:11):
cluster of diagnoses that included autoimmune disease. I had an
autoimmune thyroid condition and also what my doctor calls an
undifferentiated connective tissue disorder. Doesn't look quite like known diseases,
but it's there, and lime disease, and something called Eller's
dan Low syndrome, which is a genetic condition. So you're hear,
there's this whole cluster of diagnoses I end up with
(04:34):
that are in many ways, in my case, interrelated, but
it would take really almost two decades to learn and
understand more about how those interrelations existed.
Speaker 4 (04:44):
And so you go through this process and you get sicker,
over time.
Speaker 1 (04:48):
Yeah, exactly. It's sort of what I began getting sick.
I had graduated from college. You know, possibly in college
there were bouts of fatigue and some of this same stuff,
but it's really when I'm twenty one. It's the fall
of nineteen ninety s. I'm walking down the street and
I start getting very sharp electric shocks, and then from there,
over the next fifteen years, I get sicker and sicker
(05:09):
and sicker, like somebody waiting into ever deeper water and
not knowing where it's going to take them.
Speaker 4 (05:14):
Do you end up with a diagnosis? Does it get
sort of narrowed down? So over the years, you've got
all these different things, and then eventually you kind of
get and you go, okay, now we kind of know
what it is. Talk a little bit about what that
process was like in the later stages.
Speaker 1 (05:31):
So, you know, if I had been going to doctors
in my twenties and saying, I don't know, something seems
a little wrong, you know, what I had been met
with was, well, maybe you're just anxious or you're stressed. Right,
But when I turned thirty two, my mother died, and
she had been living with cancer, and as is the
way you know, it was a very stressful, challenging time
where I didn't sleep much, and the day after she died,
(05:54):
I came down with a virus of some kind and
basically never got better. So I get this virus, I
start being really severely fatigued, and fatigue isn't even the
word for it. It's we need another word. It was
more like cellular enervation. Like felt like the very most
basic energy functions of my body just weren't working, Like
(06:17):
my legs were made of lead and my body was
sand that I had to somehow kind of hold together
through effort. And you know, you go to a doctor
and you try to say that to them, and it's
very hard for the doctor to figure out, you know,
what to do with you. So over the.
Speaker 4 (06:33):
Next way off the mushrooms.
Speaker 1 (06:35):
Megan right, totally, totally right. So, you know, doctors were
kind of like, well, your mother just died, you know,
and I have a new health insurance, so I had
a whole new set of doctors who really didn't know me.
And one of them said, well, maybe it's because you
get your period and you're tired, and I was like,
I don't think so. I'm also having joint pain and
really distinct neurological problems at this point where I'm having
(06:58):
a lot of difficulty with word. Recall, now, I'm a
writer and a teacher, and I work with words for
a living, so this was really noticeable. It wasn't like
a small thing. It was just basic words like spring
couldn't think of and I would find myself saying, you know,
the season that comes after winter. So I was getting
increasingly kind of panicked, to be honest, and frustrated and
(07:21):
scared because it was clear to me that something was
really wrong. And I was kind of trudging from specialists
to specialists, and everyone was basically saying, oh, it's not
my problem. I'm not finding anything wrong in your labs.
So this goes on really for a few years, and
I finally end up in the doctor in the office
(07:41):
of this doctor who is the first to offer a diagnosis,
and she listens to my story and takes my family
history much more carefully than anyone had, and there's a
lot of autoimmune disease in my family. And she said, look,
before we even do labs, I highly suspect that we're
going to find you have an auto immune disease. So
that was an incredibly validating moment to your question of
(08:04):
what was it like? And it was an important moment
because it helped me feel that someone saw what I
saw and believed me. And sure enough, the labs came
back and showed that I had a lot of autoimmune
activity and I had this autoimmune thyroid disease. And for
about a year I thought that was it. I thought, Okay,
I've got it. She's given me medicine. She said, Look,
(08:24):
the medicine takes a while to kick in. Let's give
the some months. We'll tweak it, we'll fine tune it.
We do that, I'm just still not better. I'm like
marginally more energetic. But my thyroid labs now look optimal,
this other autoimmune activity has gotten better, and yet I'm
just still incredibly sick. And so that's when, in a sense,
(08:45):
the deepest part of my quest began, and I began
to understand that whatever was wrong with me was not
going to be a single label for which I could
take a single medication, you know, and get better.
Speaker 4 (08:56):
Yeah, this conversation comes for me. Not to long after,
I had a conversation with another writer and she wrote
a book about getting seven different mental health diagnoses over
the course of her adult life, and it really speaks
to this idea of how difficult it is when your
(09:20):
symptoms are not straightforward and they seem to potentially fall
into a whole lot of different categories. And you know,
she ultimately got to the point with her where she
did not want and does not want diagnoses.
Speaker 3 (09:36):
She doesn't want to know.
Speaker 4 (09:38):
And you talk about this a little bit about you know,
we can look at diagnoses twofold. We can look at
them sometimes they are very very helpful and encouraging because
they allow us to go, Okay, there's a name for
what I've got, and they can give us hope. We
also know that the flip side of them can be
they can be stigmatizing, they can limit us. But I
(10:00):
also think there's a third element that we don't talk
a lot about, which is sort of what you just
referred to, which is we get a diagnosis, it gives
us some degree of hope that things are going to
get better, and then they don't, and now it's even
more confusing.
Speaker 1 (10:14):
Absolutely, I mean, diagnosis is so complicated. So as you
just heard, for me, that initial diagnosis really did bring relief.
And I talk about this in my book, which is
I really didn't want a diagnosis, right, And I think
in my case it was because I, in a way,
it's a flip side of your other guests story where
(10:34):
I was having these symptoms that I was really convinced
had some kind of origin that we're not in mental health, right,
and I was being met with the sort of reflexive
it's anxiety. Now. I hope we do talk about the
ways in which all this is intertwined. And I think
it's really important to talk about mental health in chronic
illness and anxiety and depression in chronic illness. But you know,
(10:58):
as someone who had undergone on a kind of mild
depression in the past, this just felt so different, and
it had so many very concrete symptoms that were very
very physical, and I really had the intuition and that's
really what it was, that something was being overlooked. And
so that is the first piece of why I think
diagnosis can matter for what a're often called invisibly ill
(11:22):
patients with things like autoimmune disease, because it does help
validate and categorize your experience, right in a world in
which no one wants to make accommodations for you where
everyone is like, why are you canceling dinner yet again?
Even your friends, right, But I completely agree that in
a way, with the book Charts is the journey from
(11:43):
that moment when I get the debt first diagnosis, to
a kind of understanding that diagnosis is just a small
piece of the journey, and that the actual work of
living with a disease is to live with the disease
in whatever form it takes, the illness, the manifests of it,
the many ways in which it's individual, and it doesn't
(12:03):
you know, exactly map onto someone else's experience with the
same set of of diagnosis, and then finally to your
third point, which is so important. I think one thing
that really inhibited me was that it felt unlikely that
I would have multiple diagnoses, right, and so I did
kind of stop looking. And that was a hindrance too,
because actually there was more going on, and the kinds
(12:24):
of conditions I write about in my book often there's
more than one of them, and they coexist, and this
is part of the framework I'm really trying to unpack
and show, because I think at the time I kept thinking, God,
maybe this all is in my head. How could I
have so many things wrong with me? Right? Does that
make sense totally?
Speaker 4 (12:43):
Yeah. Let's talk a little bit about this idea of
invisible illness that you talk about. You say, the less
we understand about a disease or symptom, the more we
psychologize or often stigmatize it.
Speaker 1 (12:56):
Yeah. So this is an idea I really borrow from
the writer Susan Sontag, who wrote a really great book
published in nineteen seventy eight called Illness as Metaphor that
interestingly was occasioned by her own experience of breast cancer.
But in the book, she doesn't even write about herself.
She just writes about the fact that there are all
(13:17):
these diseases that we don't understand well that we make
kind of elaborate stories about. So, tuberculosis was once thought
to be a disease of romantic young souls, Okay, and
then over time we realize the bacteria causes it. But
it's not until we have a treatment for TB that
we stopped thinking of it as a disease that is
(13:37):
somehow connected to a particular psychology. She makes the same
case about breast cancer that you know, it was one
thought to be repressed emotions were causing breast cancer, and
she really objects that. So part of what I was
interested in this book is the ways in which I
think that these invisible illnesses that are driven by immune dysfunction,
(13:59):
that by the way, impact every part of the body,
including the brain. Often we're being psychologized and stigmatized in
ways that reduced their complexity and rendered them further invisible.
And I think also importantly let society off the hook
thinking about them, worrying about them, helping treat them, and
(14:20):
researching them, which is to say, there was this kind
of reflexive and it self stigmatizing idea that these people
are mentally ill, and so we're putting them in this
box and we're not thinking about these aspects of it,
if that makes sense.
Speaker 4 (14:33):
Yeah, you talk about how from a medical perspective, we
tended to go from broadly speaking, a time where we
thought that disease was a condition of the person, a
problem with the person, and then we've moved more into
a model that says, hey, there's a germ, and you know,
(14:56):
you treat the germ and then the problem gets resolved,
and that both are sort of incomplete views.
Speaker 1 (15:03):
Yeah, so in my own experience of illness. What really
interested me early on and confused me, to be honest,
was that it was really clear that when I was
more stressed or I had a really difficult week at
work doing things maybe I didn't exactly want to do,
or maybe I did want to do, but I wasn't
feeling well enough to do them, so that I was
(15:23):
worried about doing them. Those weeks I was much sicker
than any other weeks. And so initially that to me
was really a confounding factor, because I thought, God, does
this mean that somehow it is all invented in my head? Right?
There's maybe no illness, you know, organic illness as we
call them, and it is something purely driven by anxiety.
(15:44):
And it was only researching this book and really going
through the journey for the next twenty years that taught
me that there's this whole category of disease. We don't
do a great job of thinking about. Which are diseases
that are organic to use the term that helps define
them as not exclusively in mental illness, and they have
a clearer cut cause of some kind. We don't understand
(16:06):
that cause very well. But they are also shaped by biography,
by our lives by things like stress, by things like food,
by things like sleep, and all these choices we make,
and it's really hard for us to think and talk
about these diseases.
Speaker 4 (16:24):
Yeah, you say, complicating germ theories, paradigm of a specific
disease entity, or the infection that tidally resolves. Researchers are
showing that much of health depends on the interplay between
soil and seed host and infection with the immune system
in one's microbiome is confounding factors. And as you just
(16:45):
sort of added in there, I think our mental states
are also another factor. So all of a sudden, we
have these incredibly complex things going on that are very
hard to tweeze apart. We all relate things back to ourselves,
and so as somebody who's recovering from addiction and have
worked with people recovering from addiction for a long time,
(17:05):
addiction is such a complicated thing to reduce it to
say well it's genetics. No, genetics probably have a role.
It was the way you were raised, Well, yeah, that
probably had a role. It's your social support, It's hundreds
of things. Now again there is in your case, if
we now extend that further into illness, there is actually
(17:25):
probably to use the term an organic underlying or a
germ component. But these things get so complicated.
Speaker 1 (17:32):
Yeah, absolutely, an addiction is a great analogy in many ways,
I think. But you know, before modern medicine, all kinds
of medical practices around the world, in pre modern medicine
really thought about disease as the consequence of the encounter
between something in the world. They didn't know what it was.
They called it sometimes things like animalcules, and they had
(17:54):
all these theories were bad wins, and also a specific
person with a specific biography, right. They really thought of
illness as biographical in some ways, in ways they could
get us into trouble, right, but in ways that I
think there's an important piece of that that we just
left behind when we embraced germ theory and moved from
this idea that the soil mattered to just that the
(18:16):
seed mattered. And part of what I'm arguing in the
book is that there's this emerging understanding of medicine and
disease that I think we've seen vividly dramatized in the
pandemic that shows us that we really need to think
about both the soil and the seed disease is not
just some abstract thing that happens to us and behaves
(18:36):
exactly the same way in each of us. Even a
virus behaves really differently in each of us. But for decades,
medicine thought, the whole definition of germ theory is based
on the idea that these things behave in almost exactly
the same way in different bodies. That is turning out
to be really not true, as we've seen, and I
think it leads us to a really interesting set of
(19:00):
but also philosophical questions about how do we reform healthcare
and our discourses around medicine and sickness to accommodate the
fact that our bodies aren't always these tidy containers that
behave exactly like everyone else's.
Speaker 4 (19:14):
Yeah, like anybody who's sick, you sought help from all
kinds of places. You know, anybody who's sick for a
long time, you'll you'll turn over a whole lot of stones.
Let's broadly say, though, to keep this simple, you did
sort of traditional medicine and you did alternative medicine, and
they both have different paradigms, and there is helpfulness in each,
(19:35):
and there are things that I think are deeply problematic
in each Let's start with conventional medicine and just talk
a little bit about, you know, where some of your
key frustrations were there, and what some of the real
problems that you encountered were.
Speaker 1 (19:52):
There were things about conventional medicine that were really important,
and there were things about it that kind of ended
up helping me tremendously. But what I found along the
way was that I realized at some point that I
was in a body that lived at the edge of
medical knowledge, and as a consequence, I would show up
in a doctor's office and labs would not show a
(20:13):
really clear cut pre existing pattern. They would show a
lot of strange things by the way, I mean, it
was showing up as something's going on, But doctors often
would just not have the time, the energy, the bandwidth,
the curiosity to explore this person who sickness looked really weird.
(20:34):
And I think some of that's that were in a
really bureaucratic system that has as its basic building block
the fifteen minute appointment. I mean, how do you take
a complex history. But the other problem was that these
doctors were thinking of my body as if it were
a car, right it was a body that was made
up of discreete parts, and each person talked almost as
(20:54):
if those parts were not interrelated and they were just
there for the tune up the oil change. I couldn't see, like,
here's the problem in the carburetor, and we know how
to fix it. If I wasn't in crisis with a
thing they could like really operate on and repair, they
didn't know what to do with me. And I at
this point needed not just answers but also help living
(21:16):
with illness, and the absence of answers, and conventional medicine
had really nothing to offer to me in terms of
how to help me learn to live with this new reality.
And no one ever asked the question, for example, what
symptom is bothering you the most, Let's work together to
figure out how we can improve your life by ten
(21:36):
percent even if we can't fix the problem. That kind
of discourse in exchange was just utterly missing from every
single conventional medicine appointment I had, And so as a result,
I'm sort of trudging from specialists to specialists. Each one
takes more blood. It's stressful, exhausting, disheartening, dispiriting, right, and
none of them are talking to each other. And this
(21:56):
is before electronic medical records, so I was often fexing
records from person to person. So it felt like I
had just woken up in this pageantry of care that
was really just this elaborate bureaucracy offering me something that
wasn't what I needed.
Speaker 4 (22:12):
Yeah, and there's that whole element of when you're feeling
really miserable and you wait a long time to see
a specialist totally and you finally get in to see
the specialist and then it's completely at best useless, and
it worse, just insulting and all that. It's just it's
so painful, you know.
Speaker 1 (22:34):
Oh, it's it's yeah, exactly.
Speaker 4 (22:36):
You have a really interesting point. You referred to it,
I don't know five minutes ago, but I'm going to
bring it back up. You said, doctors don't like to manage,
they like to fix. And as you said, a lot
of this dealing with a chronic illness is about management.
And so we've got a healthcare system that is not
designed in any way. There is no manager of your care. Ideally,
(22:59):
your mary care physician would be this, but that's not
broadly speaking, what most of them do that's not what
they know how to do. And so you know the
other thing you talk about is how quickly doctor's empathy wanes.
Speaker 1 (23:11):
Yeah, yeah, so we have this structural problem. I interviewed
David Cutler, who's an economist who writes a lot about healthcare,
and he said to me, you know something I wouldn't
have known. He asked me who's the second highest paid
person on a football team? And I was like, well,
I don't know, and he said, first paid is the quarterback.
Second is the coach. And he said that's because you
need a coach to pull the choreography of all the
(23:34):
moving parts together. What we lack in healthcare is the coach. Right.
Primary care physicians they should be that, but that's not
really how medicine is set up. It's unrealistic in the
current situation to ask that of them. I think this
was really startling. I started researching doctor patient relationships because
it won't surprise you that I was really fascinated as
(23:58):
a reporter, as a writer, as a to realize that
when I was going to doctor's office that sometimes there
was this kind of faint atmosphere of antagonism, right, which
is really strange because it's called healthcare, and it was
really noticeable, right, and there were reasons for it, and
I think a lot of those reasons have to do
(24:19):
with as it turns out, when you study doctors and
empathy and healthcare workers and empathy, you find that doctor's
empathy WANs alarmingly quickly when it gets measured, and it
actually happens in med school, and it's almost a product
by design in the way that med schools set up,
where these students are sent out, you know, into the
(24:41):
hospital to do their forget what it's called, it's not rounds,
but that basically it's when they're apprenticing in all the
different departments, and it's structured in a way such that
they don't sleep and they're just exhausted. It's just kind
of right of passage in med school. You're supposed to
go through this. And what studies have shown is that
that per transforms these eager, empathetic young medstins into burned
(25:05):
out would be doctors who have stopped being able to
empathize with their patients. So it's really clear that there's
structural realities in how medicine is set up that conspire
really to drain empathy from doctors. I don't think it's
that non empathetic people want to be doctors. I think, right,
the system does something to them. So this was pretty
(25:25):
alarming to me, and it's pretty noticeable. And on the
flip side of that, I will just say, what makes
it even more alarming is that studies confirm what any
of us lay people could tell them, which is that
being cared for by a doctor actually makes us feel better. Right.
I think any one of us who's been in an
office knows that just viscerally totally. But when you stop
(25:50):
and you measure outcomes, it's actually there. And the outcomes
too that patients are, you know, pretty much impacted almost
as powerfully by kindness and empathy as they are by
some of the strongest medical drugs we have.
Speaker 4 (26:23):
My mother's been in and out of hospitals for the
last number of years, and my partner's mom has Alzheimer's,
and that level of care, when you get it, it
really does make a huge difference.
Speaker 5 (26:35):
You know.
Speaker 4 (26:35):
I could just see it in my mom, you know,
the difference when she's treated with kindness and respect and
interest from a doctor versus when she's not. She's very different.
You know the quality of her life is very different.
Speaker 1 (26:48):
Wow, so amazing. I mean it's so intuitive, but we've
come to this point where we have to study it
to prove it too.
Speaker 4 (26:54):
Right, Yeah, that's right, And to your point, a lot
of this is not to vilify doctor. Right, we have
a structural system set up in such a way that
time isn't there, that the pressure is on all aspects.
So we've got this conventional healthcare system we've talked about
where you're sort of rushed in and out. There's less empathy,
you're treated sort of like a car, you're sort of
(27:17):
less than human. We're looking at things in isolation. And
then you go all right, I've had enough of this,
and you wander into alternative medicine and you bump up
against very often something very very different.
Speaker 1 (27:29):
Feeling totally, I find it so challenging to talk about
functional and alternative medicine. And by the way, there's a
lot of there's this whole middle world too, called functional
or integrative medicine, which yeah, often is you know, you're
seeing mds people who have been trained in the Western system,
and a lot of the people I saw had started
as conventional doctors and gotten really disillusioned by what they
(27:52):
were able to offer and had decided to study other modalities.
It's really hard to talk about because there's so much suspicion,
and often there's just you know, either people reflexibly hate
alternative medicine or they reflexibly love alternative medicine, right, But
I think there's a lot of us in the middle too,
which is to say I came to it with a
lot of skepticism. I just wasn't part of my childhood
(28:15):
growing up. My parents were like, you know, you go
to the doctor, or they help you, that's it, or
they don't help you. But what I found was that
I needed this care, this warmth, and I needed coaching.
I needed someone to help me calmly sort through the
many symptoms I was having to look really deeply at
what was going on with me as a whole system,
(28:36):
and to see how they could support me. I mean,
I just needed that I was really falling apart physically.
I was really sick, and that's what I got from
alternative medicine. And did I see people along the way
who I didn't trust and who I let sell me
things that I, you know, don't think I really needed, Yes,
(28:57):
but you know, what I found in integration of an
alternative medicine was another model of the body, which was
one that was more like a garden, right, which was
a much more appealing model as a sick person, which
is your body as this kind of ecology, it's all interrelated.
If we tweak your sleep, or if we help your
nervous system rest by giving you acupuncture and putting you
(29:19):
into a calm state, it's going to help in ways
we can't entirely measure. And that was true for me, right.
It didn't magically cure me, but I would say that
some of these modalities really helped me by twenty eight
to forty percent. And the other thing they did was
make me feel listened to, seen cared for, and in
(29:40):
that sense they gave me the fortitude to continue and
that sense of well being in my mind that I
needed as well. If that makes sense.
Speaker 4 (29:49):
Yeah, So there's a lot of obvious benefits in the
way care is delivered. I think to your point, the
way we're sort of seen as whole systems. You know,
my experiences with fun medicine have been largely positive. The
things that you're describing and embedded in that world broadly speaking,
there are some challenges. What would you say to you
(30:12):
is sort of the biggest challenge embedded in that model.
Speaker 1 (30:16):
I think the biggest challenge is that, by virtue of
what they are offering, which is a more individualized approach
that goes beyond what evidence mace medicine can offer, there's
not necessarily evidence for it, right, and if the building
block of western or conventional medicine is this fifteen minute
(30:39):
appointment in which the doctor can't offer care, in a way,
the fundamental business model of some functional medicine integrated mess
is that they don't take insurance and that they are
offering you a lot of things that you are paying for.
So what occurred to me along the way is that
you know, of course, it's almost in their interest to
(31:02):
make me feel I need a lot of supplements or
tests or things, because that's sort of part of what
they're doing, is that's how they function financially. But you know,
you have to believe or hope at the end of
the day that you're finding people you trust and feel
that they're really helping you find you know, not twenty
supplements twelve of what you don't need, but they're helping
(31:22):
you in a more systematic, methodological way find the four
supplements you do need. But I think that's the challenge, right,
It's like you're in this kind of uncharted, unmeasured by
definition territory and you really don't know whom to trust
or who's good and who's not. You know, which, by
the way, applies to to conventional medicine. But there you
have the superstructure of the idea of evidence based care,
(31:45):
whereas in this other world we're saying, you know, we
can't really study acupuncture on large groups of people because
the whole idea is that everyone behaves a little differently, right,
which is true. Now that said, there's some really good
studies of how acupuncture, by the way, does help in
these immune mediated diseases that are pretty clear cut. But yeah,
it felt a little like I was an explorer in
(32:07):
uncharted territory.
Speaker 4 (32:08):
Yeah. The other thing I think that shows up in
that world, and the way you refer to it, is
it's in thrall to the idea that we control the
outcomes of our lives. In the alternative health world, often
through the case of self purification. This is where things
like you know, the power of positive thinking starts to
show up more, or it's all because your diet isn't
(32:31):
quite right, Which is not to say that diet isn't
a factor in things, because of course it's a factor
in nearly everything. But I do think you start to
run into this sense where you can a little bit
instead of the germ being the fault, yeah, it's the
way you're living is the fault, or the way you're
thinking can be the fault.
Speaker 1 (32:50):
Yeah. And by the way, I really fell into this
because I was having a lot of symptoms when I ate.
I became very obsessed with my diet in ways that
were ultimately very positive and helped me identify how to
eat for my own personal health. But along the way,
I realized at one point that I was a bit
(33:11):
caged by it, that I was so scared of eating
the wrong thing that I would almost make myself say
from the anxiety of oh, no, I did eat an
egg and I'm not supposed to right, and I would
focus on it. But also one reason alternative medicine is
persuasive and powerful is that we do all have the
sense that there are things about contemporary life that are
(33:31):
not that healthy right from our endless productivity and hyperconnectedness
to car exhaust noise, pollution, to our food system. Like,
it's true that all these things are not healthy. So
when presented with this worldview that said, look, if you
change these things, you might be able to get better,
(33:51):
I wanted that to be the whole truth, right, and
I wanted it to be utterly under my control because
I could have control of that right purify myself. I
could drink green juice all day long, I could eat massage, kale,
salad and probiotics, and I could just will myself back
to health. And in a funny way, I was still
back in an old Western modern relationship to my body,
(34:15):
but I had just replaced one set of you know,
muscle through it with another set of muscle through it,
which is muscle through it through self purification. And so
that slowed me down and actually getting to the root cause,
ironically of what was going on with me, because I
think for a long time I personally just got a
little bit hung up on maybe I can control this
(34:35):
through kind of purifying myself.
Speaker 4 (34:38):
So this kind of leads us into the next area
that I'd really like to talk about, because I think
you write about it in really helpful and nuanced ways.
And I think that's an important way to have this
conversation because it is very nuanced, and it is really
the role of emotions and thoughts and how they interact
with physical sensations. We talked earlier lear about how we
(35:02):
know that the care effect. When you're treated more kindly
by your doctor, you have better outcomes. So there's a
clear element there of like, Okay, something that's happening emotionally
is translating to better outcomes. And this discussion tends to
fall into one of two camps. One camp is you
(35:22):
know the reason that you have breast cancer is because
you have repressed emotions, or we go to the other
extreme and we go, well, none of that stuff matters
at all, and the reality is far more nuanced. Talk
to me about sort of some of your journey through
that world.
Speaker 1 (35:39):
Yeah, So it's such a hard thing to talk about
because I think one thing that is worth saying is
that our relationships as people who live with illness to
these ideas probably fluctuates and changes too, right, And certainly
my own did, Yeah, which is to say I existed
in a somewhat paradoxical state at times and always still do.
(36:01):
And that was that when people would say to me, well,
maybe you're feeling sick because you're this kind of type
A personality. You know, you're very hard working and you know,
kind of perfectionistic, and you know it's always type A
people who are sick. And I would really bridle at
that because you know, it kind of put the responsibility
for the illness and my suffering squarely on my shoulders,
(36:23):
right well, meanwhile letting the observer totally off the hook,
right and also reassuring them that maybe this couldn't happen
to them because they weren't like me, whatever that meant. Right.
So there's this kind of way you I think, as
a sick person with an ill defined disease, which are
many of them, you often encounter this reflexive way in
which other people want to reassure themselves that they would
(36:46):
never be in your shoes, because even if they got there,
they could control it somehow through being less stressed. Right.
But at the same time, as I already said, I
was aware that stress was playing a role in my illness,
and I could tell that, you know, my own habit
of taking things very very seriously wasn't always helping me
(37:08):
let go or relax. I could tell you know, I
lived in New York. I was probably never relaxing, right,
I was never sleeping enough. I was never figuring out
how to just let go and really let the sort
of restore and repair a part of my body and
help nervous system kick in. So in the book, I
set out to try to really think about these questions
in a really transparent way. And part of what's challenging
(37:32):
is that it's exactly what you've named. Because there's this
reflexive desire to say that everything about an illness is
caused by the mind. It's harder to have a nuanced
conversation about okay. In fact, a lot of illnesses are
caused by a germ, the combination of a genetic piece
encountering a virus. But if that encounter happens at a
(37:55):
moment when your mother dies, what else happens? How does
that additional stress further shape and dimensionalize your illness? How
does the fact that I had been bitten by a
tick that had lime disease intersect with my life history
in ways that lead my illness story to go kind
of gradually downhill and then suddenly downhill, right, and I
(38:18):
became really interested in that conversation that piece, and I
turned to a lot of reading that shows really clearly
by the way that there's this entanglement, it's kind of
beautiful entanglement in a way of the immune system and
the nervous system, which makes it really clear that when
your nervous system is stimulated in certain ways, your immune
(38:39):
system changes, and when your immune system changes in some ways,
your nervous system changes, so that if you are in
a world of ever constant stress, it's just more likely
that things are going to go wrong in the very
beautiful dance of immune regulation that we're all experiencing all
day long, with the immune cells changing and coming and going.
(39:00):
But second, I stumbled on this fascinating work of a
woman at Harvard named Ellen Langer, who really looks at
how expectations shape our biology. And what she found is
that expectations really do shape our biology, but not in
a vague power of positive thinking kind of way. Right.
(39:21):
It's more that when we really are convinced of the
reality of something, when we authentically and fully experience a
reality that impacts us, what's harder to control is using
our mind to persuade ourselves of the authentic reality of something. Right,
does that distinction make sense? It's really important. So you
(39:45):
can't be a person who's allergic to horses walk into
a barn and just say I'm not allergic to horses.
I'm not allergic to horses. I'm positively thinking about horses.
That's not what she's saying. That's not gonnaness the work.
She says, Actually, you just shouldn't go into the bar. Right.
You should find those triggers and avoid them. But you
should be aware of the ways of which your mind
(40:07):
is contributing to creating situations, and you can in some
ways set up situations in which you try to authentically
be encountering joy. For example, the telling example she gives
is a study she calls the counterclockwise study, where she
(40:28):
takes a lot of older people and she brings them
to a place where there's two groups, and one group
is treated as if they're thirty years younger than they are.
The old group is met at the door and people say,
please let me take your bag, let me help you
up the stairs, or your knees okay, et cetera, et cetera.
The other group, no one helps them. Everyone's like your
(40:48):
room is there. In their rooms, they're playing music from
thirty years ago. They can only watch TV shows from
thirty years ago. At the end of the week, that
group has completely different biomarkers pain levels than the gutter group, right,
which tells you something. But what exactly that's the problem
(41:08):
for all of us.
Speaker 5 (41:09):
What exactly does this mean?
Speaker 4 (41:34):
Hey, friends, it's Eric. Let's talk about something hard. How
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wrong direction. Those moments, those choice points, are where everything happens,
(41:59):
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(42:21):
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(42:41):
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I think what you speak to there is so important too,
which is that it's the things that we really believe
(43:03):
that do have an impact. It's just that we then
get caught up in trying to think that we could
get ourselves to believe something. I've read studies about do
affirmations work or not. Anything that's from the psychological study
world you've got to take with a grain of salt,
because we've got replicability issues and all kinds of things.
But what it seems to point to is that it's
(43:27):
sort of a cruel thing, and that affirmations work for
people who need them the least because they actually believe them.
So the affirmation that works for you is one that
you actually believe. So if you can work to find
an affirmation that you can believe. You know, I might
find an affirmation that says I tend to work hard
most days, and I might go, yeah, I do believe that.
Speaker 2 (43:48):
And that's going right.
Speaker 4 (43:50):
On the other hand, I can't make myself believe something
I don't. It's the cruelty of positive thinking sometimes is
that it's just like, well, if you just thought positive.
The reality is, if you really thought that way, really
felt that way, sure there's benefits. You've got a line
in the book. I don't think I have it in
my notes. I wish I did. But you basically talk
(44:11):
about just the grinding weight of trying to keep this
sort of constantly positive mood and then all of a
sudden you're in this sort of mental mind f of,
oh my god, I'm thinking something negative. I'm terrible, Like
what just is this tough place? And yet, as we say,
(44:32):
you can't sort of completely say, well, your mind and
emotions don't play a role. So it's another form of
self purification in a mental sense.
Speaker 1 (44:42):
Totally totally, and it's another place where I think those
who including us, those of us who are experiencing sickness
or things that we're trying to get over and those
around us. It's another place we want to believe works.
Speaker 5 (44:54):
Right.
Speaker 1 (44:54):
I can't tell you how many people gave me John
Sarno's book Healing Back Pain, because it works for some
people to tell themselves, lah, but it didn't work for me,
and they didn't believe it. They thought that still I
was not doing it right, and I was like, no,
trust me, I've tried. It did help with my neck
pain a little bit, but it didn't help with all
(45:15):
these other symptoms. Right. So clearly there is this whole
mysterious world of the genuine interconnection of our minds and
bodies in ways that are like profounding, wild, sublime, even terrifying,
but we want to reduce it to the most packaged,
kind of least threatening version of itself. And this is
(45:37):
really different. But I'll give you an example that I'm
going to botch slightly. But there's some evidence that when
a mother dies who's carried children in her body, that
her children are more likely to get autoimmune disease, that
something about their immune cells changes after their mind, I mean,
which is just like, so clearly there's these wild interconnections
(45:58):
that should fill with awe and awe is the knowledge
that we don't understand, as opposed to the desire to say, Okay,
just think your way out of this cancer, right, that's
not the path here, I don't think.
Speaker 3 (46:12):
Yeah.
Speaker 4 (46:12):
It gets to also an area I am really interested in,
which is how free are we to make different choices
based on our particular mental landscape? You know, you go
back to addiction. On one hand, it is absolutely true
that the alcoholic or the addict is the one who
(46:33):
has to make the choice not to pick up the drugs. Right.
I also know that having sitting fifteen years sober today
or so and one day sober fifteen years ago, the
degree of choice that I feel like I had is
radically different. It's not the same thing to just say, like,
what was my choice? Well, yes, that's true, and I
(46:54):
have a whole lot more choice today than I had then,
for a whole bunch of different factors, for a whole
bunch of different reasons. And so when we start to
talk about positive thinking, I think it's pretty obvious there
are some people that just comes pretty natural too. Yeah,
And then there are others of us, like ere who's
conducting the interview over here, who you know, it's a
(47:15):
harder battle for me. Yeah.
Speaker 1 (47:16):
Absolutely. And also I think in both illness and addiction
and any of these conditions that we're talking about that
are embodied physically and psychologically, right, there's a journey we
go on. It's not the journey we think we're going on. Right,
I think there's something fundamental that fifteen years probably took
(47:39):
you places that you could not have anticipated. Right, in
some ways that aren't tidy, that aren't exactly a script
that anyone could have handed you. And the same is
true in these illnesses, right, and yet we want, for
understandable reasons to kind of tidy the script.
Speaker 4 (47:55):
Yeah.
Speaker 1 (47:56):
Does that may make sense as a metaphor tidy the script?
I don't know, but you know what I mean.
Speaker 4 (47:59):
Yeah, we want easy answers. I mean we want easy
as it's hard. It's really hard, and particularly when you're suffering.
You know, when you're suffering, you want like think this,
drink this take that, you know, like we just want
to be better. I want to dive a little deeper
into this idea of emotions and thoughts and physical symptoms.
(48:20):
We've had a woman on the show a couple times.
She's a Buddhist teacher, name's Tony Bernhard. She's lived with
chronic illness chronic pain, and she described this in a
way that I thought was one of the best ways
that i'd heard it described, and I think it's really interesting.
She said, you know, if I'm talking about chronic pain,
I can determine there's sort of three elements here. Element
one is the physical sensations of pain. Element two is
(48:44):
sort of my level of resistance to those things, how
much I'm fighting against it. And then the third element
is sort of all the stories I'm telling myself about
what this thing means. And her point is the first
one obviously we may or may not be able to
do anything about, right. You assume you're doing what you
can do. You go to the doctor, you've got a
(49:04):
chronic pain. And the other two we've got a little
bit more control over. And think that that makes a
certain type of sense. Although, as you and I have
just been saying, like element two and three in there,
it's not like we have complete control over it's not
as easy just going well, I'll just think positive, right,
but we have the ability to work with it emotionally.
You described that when it came to your chronic pain,
(49:28):
that you were able to sort of work with it
a little bit easier in the way that I'm describing
you are sort of able to separate it out into
its little elements, but that when you got into some
of your other symptoms, things like brain fog or tiredness,
that that was much harder to do. So I guess
I'll first ask you what do you think about sort
of breaking it into those three categories, and then secondly
(49:50):
share sort of what worked for you when it came
to pain that didn't work in other areas.
Speaker 1 (49:56):
So, yeah, I know Tony Bernhard's work, and I think
that's a really important observation. You know, again with the
caveat that we don't control it all. But I thought
a lot about Buddhism, and I read a fair amount
when I was really sick, and I would add to
her three categories a fourth, which is what the world
is throwing at you. Oh yes, because speaking for myself,
(50:19):
I'm in pain every day. But when like I'm just
dealing with someone who not just greats on me, but
I think like represents everything wrong in the world, it's like,
you know what I mean, those kinds people are like,
this is this is not what we need, my pain
gets harder to tolerate, right, Or then think about Okay,
that's a trivial example. Think about someone who's got two
(50:39):
young kids and is the father worried about providing for
them and losing his job, and how that exacerbates the pain. Right.
That's not just a story he's telling himself. That's a
story the culture is imposing on him. So I do
think part of the work in my book is to
try to add that fourth piece in and say, we
got to all pause and and talk about ourselves, but
(51:01):
also talk about what's coming at us. Right in terms
of pain. It's a really interesting thing because pain is
a signal, right. It's a signal that creates an affect
or a feeling. And there was a moment that I
described in the book where I was in so much
pain I thought I was going to die, and I
remember just stopping and thinking, Okay, I'm just going to
(51:22):
observe this. This is just something that's happening to me.
That's how I'm going to survive it. It didn't make
the pain less bad, but it made time change a
little bit, and it gave you that little degree of
this too shall pass that I needed in that moment.
So I do think that one of the things we
(51:42):
also don't talk about in terms of pain is where
is it and how does it impact you? And how
does that become part of the story, So that what
enters with pain is fear, right, fear that it won't
go away, fear that it will come back, fear that
it will come back just when you can't afford for
it to come back. So, you know, I think in
(52:03):
my life, one thing I've been able to identify in
terms of pain and then even these other symptoms is
the role that fear and lack of control play and
my own intense desire for control, you know. And while
I could learn to manage pain, what was really hard
(52:23):
to learn to manage, as you said, was fatigue and
brain fog because those things were at the very center
of my perceptual being and they made it hard to
apply effort to anything. Whereas if you think about what
we're talking about, pain part of what we're doing, it's
sort of a cognitive effort, right, You're having to be
effortful about at least moving to that place where you're
(52:47):
practiced at Okay, I'm breathing through this, whatever it is
you need to do. But what brain fogs did was
made it hard to even muster that effort. So you're
just in this kind of morass that is really hard
to visualize how you're going to keep surviving it because
you don't even have the meaning of making meaning of it.
(53:08):
Right that said, what I can say is that now
in my life, you know, I talk about this in
the book. I'm not better in the traditional sense of
the world, but I'm not as afflicted as I was
in a lot of days. I'm sort of in the
sixty to eighty percent range. And there will be periods
where those symptoms return, fatigue in particular, brain fog, and
(53:28):
it's really scary, and I can let that symptom exist,
and then this whole story starts to tell. Right my
brain turns, the story begins, and I think, oh my god,
here I go. I'm sliding down this path. I'm never
going to get better, my children, what will happen my job?
You can really start to catastrophize. And one of the
things I talk about in the book is that I
think the chronically ill patient has to live in a
(53:50):
dual reality in which she's both insistent on the reality
of her disease when she needs to be, and advocates
for herself and takes the time to, you know, off
when you need to, but also resist her own most
catastrophic fears, right, And you have to work in that
(54:10):
sweet spot somehow. And it's very much what Tony Bernhard
is talking about of identifying the reality, living with it,
observing it, and time becomes this really complicated piece and
chronic illness because you know it's going to come again, right,
So some part of you is always waiting, even on
the good days, what's going to happen.
Speaker 4 (54:30):
Yeah. It makes me think a little bit about depression,
and I don't even know how to talk about it anymore.
I don't sort of back to labels and diagnosis and
all that. I've studied a lot in Buddhism. And Buddhism
we talk a lot about using the energy of the
emotion to be transforming, and I'm like, yeah, okay, that's great,
except when you're dealing with an emotion that has zero energy,
(54:53):
like anger. Okay, that yeah, I could see harnessing anger.
I can even see harnessing sadness. But when there's nothing, Yeah,
it's more of a challenge to work with nothing, and
that's what brain fog and fatigue are. They're nothing totally,
or there's something that's so amorphous is to be nothing.
So let's talk a little bit about healing. You ask
(55:13):
in the book what does it mean for a chronically
ill patient to heal? You say, in some cases it
may be a remission of disease, but in others it
means the patient is now able to manage the illness
with some degree of integrity. What do you mean by
that word integrity?
Speaker 1 (55:28):
What I mean is what I was just talking about
about advocating for yourself, accepting. You know, acceptance overused sort
of buzzword, But this goes back to what we were
just talking about. I think when I was first sick,
I just wanted to get better, and I meant better
in the way that well people mean better. I just
(55:48):
wanted this illness to go away. I wanted to go
back to the person I had been. I wanted to
forget this chapter had ever been part of my life
and just be living in this other sort of delusional
story in which you know, I was this intact person
who is just going to keep living my life as
I thought it might unfold as a person in her twenties,
and so part of the travels the quest that I
(56:11):
went on, I thought I was going on a quest
to recover, but actually the quest took me in places
that were more about learning to live with limitations. Again,
that can sound sort of jargoning and easy to say,
but I think anyone who's really done it knows how
hard it is and how real the work behind that
language is. So part of what I mean is that
(56:33):
integrity of not denying the very condition you have, but
living with it with some integrity in which you have
come to, if not accept fully acknowledge, I guess, the
reality that your body is not working in the way
you hoped it would, and that your body is shaped
(56:53):
by limitations, as are all of ours. But in this
way that's brought a kind of heightened knowledge to you,
and that you're able to both advocate for yourself and
that you have people who see and validate that reality
that you have now acknowledged. I think that's the key.
Other piece is you can't live in integrity unless you
have that doctor or that physician, that acupuncturist, whoever it is,
(57:16):
that friend who really sees and validates and understands that reality.
Speaker 4 (57:21):
Yeah, you talk about healing being thought of in a
sense of wholeness. You say, a patient is healed that
is not solely by steroids or antibiotics, but also by nature,
thrilling conversations, touch, empathy, being made to feel whole rather
than distraught as she exits doctor's appointments.
Speaker 1 (57:38):
Yeah, exactly right. I mean, you can be a sick
person whose life is you know, quote unquote limited, but
you can have incredible amounts of joy and these thrilling Right,
what is healing. It doesn't mean that I can do
whatever I want, but it means that I have the
possibility of joy. I think for me, and when I
had the worst brain fog and fatigue, that wasn't there
(57:59):
because also so no one saw it, and so there
was never the sense that I might experience a reprieve.
Speaker 4 (58:04):
Yeah. There's an old Buddhist story of a person who
is being chased by a tiger and they come to
the edge of a cliff and they start climbing down
the cliff on a vine and they've got a tiger
above them, and there's a tiger below them, and it's
a two hundred feet fall, and you know, a mouse
comes out and starts gnawing on the vine, and at
the same moment they see a beautiful strawberry right there, right,
(58:26):
And I love that story because I think that speaks
to what we're talking about, Like chronic illness makes it
more clear that you've got a tiger above you, a
tiger below you. That vine is getting gnawed on. But
that's everybody's life to some degree, right. Your mom is sick,
your dad is sick, your dog is sick, you're sick,
you got laid off from your job, your lover left you.
(58:47):
Life is just filled yeah with this, and then there
are these strawberries. Let's wrap up here because I know
we got to go, but I just real quick want
to ask a question about something you call the wisdom narrative,
which is, you know, we have this narrative. You say
that stories we tell about illness are almost entirely about
overcoming it. But if an illness can't be overcome, we
(59:08):
have this story about we grow wiser as a result
of suffering, right, Which there's truth in that, but there's
more nuance to it than just that. Can you say
a little bit about that kind of as a way
of wrapping up.
Speaker 1 (59:20):
You know, it's really hard. This is another chapter where
I tried to get at something nuanced and say, I
think there is a way in which wisdom comes what
you were just talking about, the knowledge that, of course
this is all imperiled. We're all imperiled, and we've got
to just look at those strawberries. I think I say
this in the book, or maybe I didn't in the end,
but you know, life is a lot funnier to me
(59:41):
now than it was before I was sick, because why not, right,
why not look for those strawberries and those moments of
joy in different ways. But what I wanted to really
point out was the ways in which the society around us,
whether you're chronically ill. I'm sure this is true. Addiction too,
exacts a kind of moral tax, right in order to
(01:00:04):
have to think about your suffering. It wants to get
something back from you, which is the performance of moral grace,
the performance of triumph over adversity, the idea that it
was somehow worth it, because in the end you've been enlightened.
And what I objected to is the reflexiveness of that again,
(01:00:24):
and what I want to point out is that many
of us might not choose to have gone through We
hear it all the time. By the way, Oh I
would never thank God I did go through this, right, No,
screw that. I wish I had not gone through this.
I mean I really do, but I did. So, you know, Okay,
So now what But that should be on my terms
(01:00:46):
and not other people's terms, right, It shouldn't be that
those of us who experience these things are kind of
asked by society. There's a sociologist who is a really
famous sociologist of illness and talks about like how inspiring
it is watch people suffer with moral grace. And I
was like, well, but what if you can't suffer with grace? Right?
What you are caring for six children and you've lost
(01:01:08):
your job, like no one there's no great disability out
there for you. So you know, that's a lot to
ask of that person. So that's what I'm trying to
unpack and say. You know, I think wisdom does come.
The word itself is a fascinating word. Nimologically, it's connected
to the word doom, right, And I think in the book,
(01:01:28):
I talk about the idea that Okay, wisdom is something
you get from the encounter with doom. But an encounter
with doom leaves its claw marks on you too, right,
And it's complicated. It's just again one of these really
complicated things that we need to talk about in different ways.
Speaker 4 (01:01:47):
I think, yeah, well, thank you so much. Like I said,
I really loved the book. Beautiful writing, lots of great insight.
That's not you know, as we've said, sort of not
bubblegum insight, but true deep reflection on a real difficult situation.
So thank you so much for taking the time to
come on. I've really enjoyed getting to spends some time
with you.
Speaker 1 (01:02:06):
Thank you so much. I've really enjoyed this conversation and
look forward to listening to many more. And thanks again.
Speaker 2 (01:02:28):
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