The Invisible Kingdom: Reimagining Chronic Illness: A Conversation with Meghan O'Rourke and Dr. Lisa Sanders

December 08, 2022

11/17/2022

Meghan O’Rourke

Writer, Poet and Editor

Author of the New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness (2022)

Senior Lecturer in English, Creative Writing, Yale University

Lisa Sanders, MD, FACP

Associate Professor of Medicine (General Medicine)

Co-Director, Writers Workshop, Yale School of Medicine

Author, Diagnosis column, New York Times Magazine

Information

ID: 9257
To Cite: DCA Citation Guide

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00:00So hi everybody.
00:02My name is Anna Reisman.
00:06I'm the director of the Program
00:08for Humanities and Medicine and
00:10happy to see so many of you here.
00:11Joining us today for this conversation
00:14between Megan O'Rourke and Lisa Sanders.
00:17Before I introduce the speakers,
00:19I want to acknowledge that this is the
00:22first humanities and medicine event
00:24here since the death of Tom Duffy,
00:27Doctor Thomas Duffy, who was my
00:29predecessor and directed this program for.
00:31Close to 20 years and I have
00:33a lot to say about him,
00:35but I'm going to save it for January
00:37when we have the annual Duffy Lecture.
00:39Just I'll say now that many of us
00:42missed him and his presence even in
00:44this virtual space and looking forward
00:46to having a chance to say more in
00:48January at the Duffy Lecture which
00:50will be given by Doctor Robert Rock.
00:52So more on that to come.
00:55I also want to mention our next event,
00:58which will take place on November 30th.
01:01Which will be a hybrid event,
01:03a panel discussion on racial science
01:06and slavery in US medical schools,
01:09featuring historian of medicine
01:10Chris Willoughby,
01:11author of the New Book Masters
01:13of Health and Conversation with
01:15panelists Leanna DeMarco, Sean Smith.
01:18Carolyn Roberts and medical
01:21student Chinya jilli.
01:23If you're interested in hearing
01:25about these and other future events,
01:27we have a busy spring.
01:29Please sign up for our mailing
01:30list if you're not already on it.
01:31And Karen,
01:32if you could put the address
01:33the e-mail address in the chat,
01:34that would be great.
01:37And now for today's presentation.
01:39I'm thrilled to have Megan and Lisa
01:42here today in this virtual space for
01:45the session entitled The Invisible
01:47Kingdom Reimagining Chronic Illness.
01:50Megan O'Rourke is the author of the New
01:52York Times bestseller of the same title,
01:55The Invisible Kingdom reimagining
01:56Chronic Illness, which was a finalist
01:58for the National Book Award.
01:59She's also the author of the Long Goodbye,
02:02as well as three poetry collections
02:05for writing.
02:05Has appeared in the Atlantic Monthly,
02:07The New Yorker, New York Times,
02:09and many other places.
02:10She's the recipient of a Guggenheim
02:12Fellowship, a Radcliffe Fellowship,
02:14and awaiting Nonfiction award.
02:16Megan lives in New Haven,
02:17where she teaches at Yale and
02:19is the editor of.
02:20Be wonderful, Yale review.
02:21Welcome, Megan.
02:24My colleague and friend,
02:26Doctor Lisa Sanders,
02:27is an internist and associate professor on
02:29the faculty here of Yale School of Medicine.
02:32She created and writes the diagnosis
02:34column for the New York Times magazine,
02:36the inspiration for the series House, MD.
02:39She helped create the documentary
02:41series diagnosis for Netflix,
02:43which followed a series of patients
02:45in their search for answers.
02:48Her most recent book, diagnosis,
02:50Solving the most baffling medical mysteries,
02:52is the collection of her New York.
02:53Times columns Lisa is also the author
02:55of the New York Times bestseller
02:57every patient tells a story,
02:59medical mysteries, and the art diagnosis.
03:02And very appropriate to today's talk,
03:05beginning in January,
03:06doctor Sanders will be taking on a new role.
03:09She will be at the home of a new
03:12clinic being created right here at
03:15Yale that will focus on long COVID.
03:18We are joined by ASL interpreters Jay and
03:21Rhonda and closed captioning is available
03:23and I invite you to put your questions.
03:27You can use the chat as
03:28you as as you would like.
03:30If you have particular questions,
03:31please use the Q&amp;A.
03:34Function at the bottom of the
03:35screen and I will be back later
03:38for the questions and answers.
03:39And for now,
03:40we'll turn it over to Lisa and Macon.
03:42So welcome everybody again.
03:47Thank you so much.
03:48And I think that we're supposed
03:51to kick off with me reading
03:53a little bit from my book.
03:55Thank you everyone for coming tonight.
03:58It's wonderful to be here in this
04:00space with you, even if we're
04:02not together in a physical space.
04:04And I'm really looking forward to
04:06talking with Lisa and then talking with
04:08all of you and hearing your questions.
04:11I thought, I thought I would read
04:15just a short section of the book,
04:17The Invisible Kingdom,
04:19reimagining Chronic Illness which.
04:21Began out of my own experience of
04:25getting mysteriously ill with a
04:27poorly understood set of conditions
04:29that turned out and searching
04:32for years for an answer.
04:34A search which quickly became
04:36not only a biographical problem,
04:38but a kind of intellectual problem
04:40of kind of writerly problem.
04:41Which is to say that it set off
04:44all kinds of questions for me.
04:47Of the sort that I attended to
04:49tackle in my work as a journalist
04:51and nonfiction writer already.
04:53So a lot of my work as a writer
04:55has been around.
04:57You know,
04:57kind of looking at common experiences
05:00that that in some ways I think
05:02we're telling the wrong story about
05:05where an oversimplified story about.
05:07And in a way,
05:08that's what I ended up feeling
05:09about my own experience of chronic
05:11illness and realizing that my
05:13experience stood in for or was at
05:15least analogous to in certain ways,
05:17the experience of many others,
05:19and of course quite distinct in other ways.
05:22So the book aims to both leave
05:25quite a lot of research.
05:28I spent eight years writing it,
05:30eight years talking to researchers,
05:32clinicians, patients,
05:33people with illness, their families.
05:37One of that research doesn't make it
05:38into the book, but it's the sort of.
05:41Substract the book, if you will,
05:44and then there is a fair amount
05:46of research in there,
05:47and that's woven together with my own story,
05:49and the aim was to illuminate something.
05:54Very granular, in fact,
05:55about the lived experience of
05:58patients with chronic illness
05:59while also contextualizing that
06:01experience and sort of social,
06:04historical, medical history,
06:05because it seems to me that
06:07you really can't understand.
06:09I couldn't even understand my own
06:12experience without learning a lot
06:14about the history of medicine.
06:16And other things to help me think
06:19about the kinds of problems I was facing.
06:22So I'm going to read just a few
06:25paragraphs from a chapter called
06:27Impersonation, which tries to take on.
06:30Animating some of the the loneliness really,
06:33I think of of being ill in a
06:36way that's not understood.
06:39So.
06:40And excuse me,
06:41I'm getting over a little cold
06:44so I'm a bit nasal impersonation.
06:47One of the hardest things about being
06:49ill with a poorly understood disease
06:51is that most people find what you're
06:54going through incomprehensible,
06:56if they even believe you are
06:58going through it.
06:58In your loneliness,
07:00your preoccupation with an
07:02enduring new reality,
07:03you want to be understood in
07:05a way that you
07:06can't be. Pain is always new to the sufferer,
07:09but loses its erect originality for
07:12those around him, the 19th century
07:15French writer Alphonse today observes
07:17in his memoir of Living with late stage
07:21syphilis in the Land of Pain. He writes.
07:24Everyone will get used to it except me.
07:28Worrying that your symptoms are psychosomatic
07:31or even imagined is part of life for many
07:34people with poorly understood illnesses.
07:36Although the experience of
07:38illness is not just in the head,
07:40it is also not just in the body.
07:42The person enduring such an illness
07:46faces a difficult balancing act.
07:48On the one hand,
07:49she must advocate for herself even when
07:52doctors are indifferent or ignorant,
07:54and not be deterred when she
07:56knows something is wrong.
07:57On the other,
07:58she also must be willing to ask whether
08:01an obsessive attention to symptoms
08:02is going to lead to better health.
08:05The patient has to hold in
08:07mind 2 contradictory modes.
08:08In other words,
08:10insistence on the reality of the disease and
08:13resistance to her own catastrophic fears.
08:16I found it hard that fall and
08:19winter to strike that balance.
08:21I was increasingly worried.
08:23After all,
08:24a terrible anxiety attends chronic illness.
08:27Overtime,
08:28it becomes difficult to untangle the
08:30suffering from symptoms like pain
08:32from the suffering inflicted by the
08:34concern over the possibility of more
08:36pain and worse outcomes in the future.
08:38This does not mean that the illness
08:41is in the mind necessarily.
08:43Rather, the mind,
08:45that machine from making meaning,
08:47makes endless meetings of its new state,
08:50which may themselves influence
08:52the experience.
08:53It was in this recursive hall of mirrors,
08:57trying to adjust to my body's ailments,
08:59that I lived.
09:01There is a loneliness to illness,
09:03a child's desire to be pitied and seen.
09:07But it is precisely this
09:09recognition that is elusive.
09:11How can you explain and identify
09:13your condition if no one has any
09:15grasp of what it is you suffer
09:17from and the symptoms wax and Wain?
09:19How do you describe a disease
09:22that's not always there?
09:23The hardest thing to convey to doctors
09:26or friends was the debilitating fatigue,
09:28which many other patients I
09:30knew experienced as well.
09:32Complaining of fatigue sounds like
09:34moral weakness in New York City.
09:36Tired is normal.
09:37But the fatigue of physical dysfunction
09:39I came to recognize is as different
09:42from normal sleep deprivation as
09:45COVID-19 is from the common cold.
09:47It was not caused by needing sleep,
09:49I thought.
09:51But by my body cellular conviction
09:53that it needed to conserve energy
09:55in order to fix whatever was wrong,
09:58the feeling erased my will,
10:00the sense of identity that drives us.
10:03The worst part of my fatigue was
10:06the loss of an intact sense of self.
10:09It wasn't just that I suffered brain fog.
10:13It wasn't just the loss of self
10:15that sociologists talk about in
10:17connection with chronic illness,
10:18in which everything you know
10:20about yourself disappears and you
10:21have to build a different life,
10:23a different identity.
10:24Rather, as I got sicker that winter,
10:27I no longer had the sense that I
10:30was a distinct person.
10:32On most days, I felt like a mechanism
10:34that moved arduously through the world,
10:37simply trying to complete its task.
10:40Sitting upright at my father's
10:42birthday dinner at a quiet restaurant
10:45required a huge act of will.
10:48Normally,
10:48absorption in a task and immersive flow
10:51can lead you to forget that you feel pain,
10:54but my fatigue made such a state impossible.
10:58I might,
10:58at the nadir of my illness,
11:01have been able to write any
11:03one of these sentences,
11:04but I would not have been able
11:07to make paragraphs of them.
11:09To be sick in this way is to
11:11have the unpleasant feeling that
11:13you are impersonating yourself.
11:15When you're sick,
11:16the act of living is more act than living.
11:19Healthy people have the luxury of
11:22forgetting that their existence depends
11:24on a cascade of precise cellular interaction.
11:27Not you.
11:28Farewell means cherished me now,
11:31so heavy, so indistinct,
11:33Dodie writes in his book.
11:36Align, I know, often thought of.
11:39My mental sensation of no longer being a
11:41person had a correlating physical sensation.
11:44My eyes no longer seemed
11:46like lenses onto the world.
11:48They seemed rather to be
11:49distinct parts of my body,
11:51as perceptible as fingers,
11:53ugly, distant, protuberant,
11:54like old fashioned spectacles.
11:57My face was a mask I was conscious
11:59of at all times.
12:01It made me feel categorically fraudulent.
12:03I could feel the fat in my cheeks and
12:05the weight of my bones as I spoke.
12:07Everything was wrong and that
12:09wrongness was inside me,
12:11but I wasn't sure anymore who that me
12:13was or how to express what was happening.
12:16As Virginia Woolf testified in on being ill,
12:20English,
12:20which can express the thoughts of
12:22Hamlet and the tragedy of Lear,
12:24has no words for the sugar and the headache.
12:27The merest schoolgirl,
12:28when she falls in love,
12:30has Shakespeare or kids to
12:31speak her mind for her.
12:33But let us suffer or try to describe
12:36a pain in his head to a doctor,
12:38and language at once runs dry.
12:42For me, the hardest part was not
12:45being comprehended or not believed.
12:48Physical pain does not simply
12:50resist language,
12:51but actively destroys it rights.
12:53Elaine scary in the body and pain
12:56to have penis to have certainty.
12:59To hear about pain is to have doubt.
13:03The same was true of my symptoms
13:05of fatigue and brain fog,
13:07none of which could be seen.
13:08Indeed, it was true of all my symptoms.
13:11In those months, I was lonely in
13:13a way I never had been before.
13:16I could taste the solitude of the
13:19human body like brine in my mouth,
13:21a taste that never left me.
13:25Maybe I'll stop there.
13:27And then Lisa,
13:28if there's other places we think
13:29of that I could read from,
13:31I'm happy to read another few pages,
13:33but to get us at least in the conversation.
13:37Well, it's great to see you and I'm
13:40so thrilled that you're a finalist
13:42for the National Book Award.
13:44I think that's I'm so excited for you.
13:46That's really marvelous.
13:49Right. So you call your book.
13:54The invisible Kingdom.
13:58What do you mean by that?
13:59You know, what is this Kingdom and
14:01why do you feel like it's invisible?
14:04Yeah. So I don't think it's
14:07in that exact section, but.
14:10So the Invisible Kingdom was an
14:13image I came up with to describe.
14:16To describe the you know,
14:19the book is subtitled
14:20reimagining chronic illness,
14:21and as I explained in the introduction,
14:24I use chronic illness.
14:26Sort of interchangeably with two other terms,
14:29one of which is poorly understood
14:31illness and one of which is infection
14:35associated chronic illness or conditions
14:38that infection associated illnesses.
14:40So in the book there are things I'm
14:43writing about that are probably.
14:45Relevant to anyone who lives
14:48with a condition that that is
14:52not doesn't have an end.
14:54And then there are things I'm writing
14:57about that are really specific to
14:59this constellation of conditions
15:01that I'm describing as poorly
15:03understood that are often entangled.
15:05And for whom?
15:07The people living with them often
15:10don't necessarily look sick,
15:11or indeed are so sick that they've almost
15:14dropped out of society and are bed bound.
15:16And so in various ways they have
15:18what's called an invisible illness,
15:20right?
15:21One of the ways in which they're
15:23invisible is the fact that we
15:24don't know how to treat them or how
15:27to understand these conditions.
15:28Another way is that the diseases
15:30might relapse and remit.
15:31Maybe you have an autoimmune disease
15:33that's actually fairly known,
15:34but the contours of that.
15:36Disease come and go.
15:37And so you have periods of
15:38functionality and periods where you're,
15:40you know, in your bed.
15:41And that's a kind of story we don't
15:43know how to tell I think as a society.
15:46So I became very interested in the
15:48fact that as I interviewed about 100
15:51patients with different related conditions,
15:54all of them expressed this sense
15:57of loneliness and invisibility
15:59that I just evoked a bit about
16:02my own experience and.
16:03So I think the book is the attempt
16:06to make the case that although
16:08each of us as you know, solitary.
16:12Individuals undergoing these conditions are,
16:15you know, feel invisible,
16:16are alone,
16:17that together there really is
16:18this invisible Kingdom of people.
16:20And that through that kind of
16:22act of unifying and that sort
16:23of poets act of naming,
16:24maybe we can help those missing
16:27millions be seen and heard.
16:29The other reason I call it that is that
16:31we are living through a kind of epidemic,
16:34as some researchers put it to me,
16:36of invisible illness.
16:37Autoimmune diseases are
16:38dramatically on the rise.
16:40And that seems to be not just an issue of.
16:43Better diagnostics,
16:43but in fact rising rates and
16:46as of course we now know,
16:48we are living through this really,
16:50really troubling and concerning.
16:55Problem of long COVID that is going to.
16:59Be the long after effect of
17:01this pandemic, I'm afraid so.
17:02Those numbers are tremendous.
17:04So, you know, again,
17:05there's sort of this effort to sort of say,
17:07this is not my story, this is,
17:09this is a story of us all that
17:11we all have to pay attention to.
17:12That's a long answer, but yeah.
17:15OK, that's, that's a good,
17:20that's a good I understand.
17:24Times in your book,
17:26you're pretty hard on traditional medicine.
17:30I felt a little defensive when I was
17:32reading it as just a regular doctor.
17:35At one point you imagine what a
17:38perfect medical encounter would be,
17:39and you say that it should be
17:41a combination of alternative
17:43medicine and traditional medicine.
17:45So. What would that look like?
17:48I mean, what?
17:49What doesn't?
17:51Traditional medicine have that
17:53alternative can offer you.
17:58Yeah, so the chapter you're referring to
18:01is a chapter where I talk about my own.
18:05Turning to alternative medicine
18:08after traditional medicine really
18:10failed to diagnose me with
18:12anything for more than a decade.
18:14Um, during which I had some
18:17pretty diagnosable conditions.
18:19That was a little further, you know,
18:22research could have probably been found,
18:23presumably including autoimmune thyroiditis.
18:28So in that decade,
18:29I had to really live thrown on my
18:32own resources to figure out how
18:33to function right? I mean, I'm.
18:36I'm always been a very ambitious
18:38and driven person. I was.
18:40Young I was, you know,
18:432324 when I started getting sick.
18:44I was an editor at The New Yorker magazine.
18:47I had a boyfriend.
18:48I want to have a family,
18:49you know, I wanted to live.
18:51So in the absence of a diagnosis
18:55or much concrete treatment or help
18:58or really interest, I would say.
19:00From the particular set of doctors
19:02I had at that time.
19:04Umm, I, you know,
19:07did turn to alternative medicine
19:10and also just a lot of a lot of
19:12what I'm writing about are kind of
19:14lifestyle management things too,
19:15that I think a lot of autoimmune patients
19:19have way better sleep and better fit,
19:21you know, better food,
19:22all that.
19:22So.
19:23So that led led me in this chapter
19:25to really think about, you know,
19:26what was it that I was from
19:28a very evidence based person.
19:29I like science.
19:30I want, you know, I want science to help me.
19:33Science that's really help me get better.
19:35So what I was trying to get at
19:37in that chapter is actually not
19:39to be prescriptive that there's
19:40any one way that any specific
19:42medical encounter should be,
19:44but more to investigate.
19:48The kinds of stories that conventional
19:52medicine and and and you know,
19:55alternative medicine are telling the patient,
19:57right and to really talk about and
20:00think deeply about for a moment.
20:02What those stories actually do
20:04to and for the patient's right,
20:06we're we're kind of familiar with
20:08telling the story about well you
20:11know alternative medicine you know
20:12may not be effective maybe quackery,
20:14maybe these things.
20:15So you know there's that kind of story
20:17and I I certainly address that in the book.
20:20But what I'm also interested in are
20:22the pretty documented effects of care
20:25and by the way those effects apply also
20:28to traditional conventional medicine and.
20:33You know there's a lot of evidence
20:35that when patients feel cared for,
20:37when they're treated with empathy,
20:39you know the actual level of
20:41medication they need drops down,
20:42right.
20:42The they're symptom reports
20:44drop dramatically down.
20:46So it's really interested in this
20:47like if care is itself that impactful,
20:50why don't we think more about care
20:52and and why don't we make much
20:55more room for our you know medical
20:58system to offer that kind of care
21:01because although I'm critical of.
21:02Doctors in the book, I'm, I'm really,
21:04my focus is really on the system,
21:05and it's actually not on doctors.
21:07I'm quite sympathetic
21:08toward toward the plight.
21:11Doctors have saved my life,
21:13my my new doctors,
21:14so I'm really interested,
21:16but I'm also really interested in
21:18the fact that so many of the patients
21:20I interviewed who had autoimmune
21:22diseases felt like they were going
21:24through a system that was very
21:26siloed and that they would go to,
21:28one woman said to me,
21:28I went to a rheumatologist and neurologist,
21:31a dermatologist say,
21:32you know, my GP, my OBGYN,
21:34and she said I felt like cardiologist,
21:37she said I felt like each one
21:39was crossing their organ off.
21:41They're like the list and
21:42saying not my problem,
21:43move you on to the next part of the line.
21:46And, she said.
21:46And at the end,
21:47there I was and all my organs were
21:49cleared and I was sick as a dog and
21:51couldn't take care of my child.
21:53And she had,
21:53it turned out she had lupus that
21:56just wasn't diagnosable yet.
21:58And so one of the things that interested
22:00me about alternative medicine,
22:01again as a as a kind of cultural critic,
22:04thinking of the cultural critic,
22:05was that the story alternative
22:07medicine tells the patient is one of
22:10your body is not a car with different
22:12parts that we can take out and fix.
22:15Your your body is actually much more,
22:16as I say in the book, like a garden, right?
22:19That needs tending and it
22:21needs this kind of holistic.
22:23Overall approach,
22:23and I think part of what alternative
22:27medicine asks that something I think
22:30conventional medicine can probably.
22:32Probably do a better job of asking
22:34the chronically ill patient is.
22:36Given the reality of your condition. What?
22:40Given there are things we can't change.
22:43What would help you live a better life?
22:45What what would help where?
22:47Where are the areas that you
22:48need help in your life?
22:49Right.
22:50Which I think my answer to other
22:52people's answers to is often not
22:54necessarily with even alleviation
22:55of the worst seeming symptom, right?
22:58That the answer to that question
23:00is really complicated.
23:01And an analogy for asking
23:03that question I think,
23:04comes to us from palliative care.
23:06So.
23:07So that was something I was really,
23:08really interested anyway.
23:09There's more I could say there,
23:10but so I think I was fascinated by the ways.
23:14Which both systems had their own
23:16scripts and have been positioned
23:18as being kind of opposed,
23:20but might actually have things
23:22if we if we took away.
23:24We bracketed certain questions and we
23:27looked more at these scripts of care.
23:30What? What could we learn?
23:33Well, I have to say that
23:35there were several times when.
23:37I guess the reason I felt defensive
23:39was because I recognized the
23:41truth of what you were saying.
23:43I mean I have also felt as I send
23:46my patients to cardiologist,
23:48pulmonologist that they say, well,
23:52her heart's fine, belongs fine, like no,
23:56they had a normal stress test, so yes.
24:00Umm, I I guess that was why
24:03it was so painful to read.
24:05You know, I I love the lump.
24:08Yeah, go ahead.
24:10Right. Like I think that's,
24:11that's the other thing that
24:13I I didn't say is just that.
24:15You know, one doctor I interviewed,
24:18Jack Cochran, who used to lead the
24:21Kaiser Permanente, and he, you know,
24:22he talked a lot about this idea
24:24of kind of crisis care versus,
24:26you know, we talk about prevention
24:27and traditional medicine, but maybe.
24:29You know, one of the big things
24:31that I talk about in the book is
24:32the crisis of care for convention
24:34time for conventional medicine.
24:36That time is so tight and there's
24:38so much bureaucracy anyway.
24:40So I think that's something that
24:42I've heard a lot too, is, you know,
24:43how do we really think about, right,
24:45that space before you're really sick
24:47but you're starting or before your
24:49tests show that you're really sick?
24:51Let's put it like that,
24:52you know,
24:53how do we care for people in that space?
24:56I love the line in your book.
24:59Where silence, where science is silent,
25:03narrative creeps in.
25:04I feel like I have an intuitive
25:06sense of what that is.
25:08But what exactly do you mean by that?
25:10I mean, do you?
25:11What do you mean by that?
25:14Yeah, it was a great question.
25:15I mean, a lot of different things.
25:17I'm glad you asked that,
25:17because when I wrote that,
25:18I was like, I'm not really
25:20spelling this out for the reader,
25:21but that's part of the point.
25:23The line is supposed to
25:24do for you what it right.
25:25You're supposed to start to supply
25:27a narrative. I mean a few things.
25:28I mean, one is.
25:31Well, I mean,
25:32I mean that which is what when
25:33when we don't have science,
25:35we don't have frameworks for
25:36understanding what is going on in the
25:39body and we don't fully understand long
25:41COVID when we don't fully understand.
25:43You know, the rise in food allergies,
25:46et cetera.
25:47We as a society start to supply narratives,
25:49right, we'll say.
25:53Uh, you know, let's put it this way.
25:55I have this great aunt
25:57Gert who was always sick,
25:59but it was before people really
26:01understood much about autoimmune disease.
26:03Before.
26:03She clearly,
26:04she probably had some kind
26:06of autoimmune disease.
26:07But the narrative of the family
26:09was like Gert likes attention,
26:11she likes to be in her bed.
26:12She's an artist,
26:13which she was you know and I'm sure
26:15she did a little bit like attention
26:17probably because she felt terrible.
26:18I mean no one visited her but so.
26:21So when we don't have a framework
26:24for understanding what you know,
26:26what an infection associated you know,
26:29how prevalent infection
26:30associated diseases are,
26:31what they might look like,
26:32who gets them,
26:33it's really easy for us to
26:34start to tell a kind of.
26:36Psychological or cultural story about the
26:38people who are living with those conditions.
26:41As a society individually,
26:42it's also really easy to
26:43tell ourselves stories.
26:45So part of that line is about what
26:47happens to the patient when we lack
26:49a diagnosis or the diagnosis isn't
26:51fully illuminating of what's going on.
26:53And in my case, I felt obscurely that
26:57something was just wrong with me,
26:59that I was like,
27:00not good at being a person, you know?
27:03And that feeling really warped.
27:06My entire 20s and 30s,
27:10first half of my 30s,
27:11and it's still hard for me to get rid of.
27:13Like whenever I have a flare now,
27:15my immediate response is to feel
27:16that I have done something wrong.
27:18Like it's my fault,
27:19something I was supposed to control,
27:21something and it didn't happen.
27:24So there's that piece too.
27:26And then and then,
27:27you know,
27:27it extends far outward to thinking
27:30about things like the rise of
27:32sort of anti VAX movement, right?
27:34Like why?
27:35That's not exactly where science is silent.
27:38But part of what I'm getting at
27:40there too is that we do have to.
27:43This is really challenging.
27:45Think about the stories people are
27:47telling themselves and that science
27:49might have to actually think about
27:52and engage with and find language.
27:54For connecting around people's fear too,
27:59you know.
27:59Not just the medical piece of the encounter.
28:04Right. Well, you know, go ahead.
28:08Not just fear, but their desire
28:09is their emotions, but all,
28:11all of that superstition
28:12that we all have. Yeah. Yeah.
28:16Well, so. In the face of the kind of
28:18persistent pain that you describe,
28:20or a recalcitrant illness.
28:26People long for something better.
28:29You say a better story.
28:31Is it the doctor's job to give
28:35these patients a better story?
28:38Is that useful?
28:39Is that part of their job?
28:40Or is that I don't know?
28:43Where does that story come from?
28:45You. I think right.
28:48I don't think it's the doctor's job
28:52necessarily, but I do think that it
28:57is probably science's job in part.
28:59Right. Part of what I'm saying here is.
29:02We need research, right? The research,
29:04the absence has to do with the lack of any,
29:07not lack of knowledge around some
29:09of the conditions I'm writing about.
29:11And then I do think that structurally,
29:14yeah, socially, societally,
29:16it's our job to think about things like the
29:20delivery of care and what health is, right?
29:23I mean, in a way that's the
29:25function of any polity.
29:26Democratic polity is to.
29:30Really be. In some sense,
29:32constantly thinking about what
29:34is the right to health.
29:36What is.
29:36You know, what are we supplying in a system,
29:40how has the market affected the system,
29:43what pressures have been put upon it
29:45and what pressures are on doctors
29:46and and patients and the pressures
29:48really are on doctors too, right?
29:50I think the critique here is
29:52not again of any.
29:53Individual doctors trying to
29:55labor mightily within this system,
29:57but really of the structural questions
29:59that I think we do have to address
30:02when we're looking at this epidemic
30:04of chronic illness that exposes,
30:06I think,
30:07the weaknesses and the fraught parts
30:10of the structure of the delivery
30:13of care in the United States.
30:16Yeah, so, you know, that's,
30:19that's that sentence is I think
30:21a getting at that stuff.
30:22But also.
30:23You know,
30:23getting at a lot of my work
30:26is about trying to just name
30:29realities that often go unnamed.
30:31And the point about story
30:33there too is to say like.
30:37The patients, the it's really the person.
30:41The person living with
30:42disease is not just a patient,
30:45they're a person whose life
30:47happens to have been shaped by.
30:50The bad luck of or the whatever,
30:52it is often bad luck of having
30:55this illness that they now have to
30:57either now have to or have always
30:59had to shape their lives around.
31:02And as Joan Didion said,
31:04that great essayist,
31:05we tell ourselves stories in order to
31:07live that line is possibly couldn't
31:09be more true of any group but
31:11patient people with illness, right?
31:13As someone with illness,
31:14you're struggling in a way that
31:16healthy people are not just
31:18to survive their day-to-day.
31:19And so for me that.
31:21Active,
31:21kind of telling myself a story
31:23to keep myself going.
31:24Like what really shaped my
31:26day-to-day experience, right.
31:27And so part of that line too is to say,
31:30you know.
31:32The story that you are just a bunch
31:37of organs that are not functioning if
31:40that's your life and your life is.
31:44Constricting and contracting
31:45day after day and you're 27.
31:48It's not the world's most satisfying story.
31:51You want your life to have a little
31:53more meaning and dignity than that.
31:55And so that's part of what I'm getting at,
31:57too. It's like. We who are?
32:02Impacted.
32:05Have to find a way to make
32:07meaning of the suffering, right.
32:09And and and and doctors
32:11are part of that right.
32:12The encounters we have with the medical
32:14medical system are part of that.
32:16And I know a lot of people who
32:18work in medicine and and sort
32:19of are academics who think about
32:21medicine and like that's not tech.
32:23Is that really necessary
32:25part of what medicine does?
32:26And I do think the challenge here is not
32:29only a medical challenge to societal one,
32:32but I don't see a way around.
32:35I don't see, you know,
32:37doctors like.
32:38Occupy so much mental space in
32:41patients minds and and you're larger
32:43than life to us really even when
32:45we're critical you know and and so
32:48I think I don't see a way around.
32:50That problem of how do we, how do we,
32:54how do we make room for medicine to offer?
32:58Care so people who really need it,
33:00yeah.
33:02You know, maybe this is an unfair
33:04question because I don't know.
33:05I don't know that you've thought
33:07about it or researched it at all,
33:08but are there places?
33:10Outside of the United
33:12States that do this better.
33:14You know, someone asked me that the
33:16other day and I don't have a great
33:17answer because I haven't gone to every.
33:19I just don't know enough about.
33:20I mean I have a good sense
33:22of European healthcare.
33:22I don't have a great sense of
33:24healthcare in Asia or other places.
33:25So I don't believe there is,
33:28you know, you know,
33:29I think in China there is like
33:31a they use acupuncture more
33:33than we do things like that.
33:35But I don't know enough about and I should,
33:37I should, I should learn more
33:39about the global systems as well.
33:40Yeah.
33:42You know, I mean, because so much
33:43of what's wrong with our system.
33:45System feels very specific to where we are.
33:49But I don't know that anybody's fully
33:51gotten it right. Maybe there are.
33:55You know. You're somebody who
33:59cares a lot about words, I know.
34:05And I really am bothered by the
34:08fact that you call this group
34:11of illnesses chronic illness.
34:13You know, there's so many chronic
34:16diseases that makes up the the the main,
34:20the main type of disease that I treat.
34:23You know, as an internist.
34:25You know, there are people who have
34:27diabetes and high blood pressure and end
34:29stage renal disease and heart disease.
34:31All these other things that are
34:34actually are what I consider.
34:36Chronic illnesses.
34:41What I know you might have touched
34:43on this in another answer,
34:45but can you describe what you mean by
34:48chronic illness and can we come up with
34:51a better rate is a better description.
34:54I know that if you could have
34:55found one, you would have, but
34:57I mean look, you know it.
35:00Problems of language,
35:01languages and material.
35:02Like anything else that has its limitations.
35:04I I'm pretty clear in the
35:06introduction that I try to use the
35:08chronic illness is is the umbrella.
35:10Right. That I'm parts of the book
35:13will be touch on aspects of the
35:15experience of chronic illness,
35:16which is to say knowing that
35:18you're going to be living with
35:20something for the rest of your life.
35:22My brother has epilepsy.
35:23He in some sense has a chronic illness.
35:25There are things in my book that
35:27apply to his experience, right.
35:29But then within that I am speaking
35:31much more specifically about the
35:33kinds of illnesses that I have,
35:35which are these what I call sort of
35:37again slightly initially because
35:39again there's no great words.
35:41Poorly understood illnesses and
35:43then also infection associated.
35:45Chronic illnesses.
35:48You know, so I thought about not using
35:50the term chronic illness at all,
35:51but that just seemed too technical and
35:55I do think part of the book is about.
35:58The adjustments that come with.
36:02Moving from a you know what?
36:04What's Susan Sontag called?
36:06You know, moving to the ninth side of life,
36:09as Susan Sontag called illness,
36:10and knowing that you're
36:12not there temporarily,
36:13you're there permanently,
36:14you now have a passport to the
36:17to the land of being sick.
36:19It's not a passport you wanted to have.
36:21So you know I appreciate that
36:25that imprecisions there.
36:26I try to be very consistent in the book
36:29when I use the term chronic illness
36:31I'm trying to talk broadly about.
36:34Something about chronicity that
36:36I think might apply to others.
36:38And of course,
36:39always when I use a term or
36:40think about things,
36:41I know that my experience may
36:43not be relevant to others.
36:45And then I try to use the other terms,
36:47poorly understood illness or infection,
36:49associated illness much more specifically.
36:51What I'm really digging into
36:52those kinds of histories and
36:54disorders or autoimmune disease.
36:55I mean, you know,
36:56there's a lot of different
36:57things brought in there.
36:57So not everything I'm talking about is
36:59even an infectious infection associated.
37:01A lot of autoimmune diseases
37:03may not be infection associated.
37:05So there's a certain necessarily necessary.
37:08There is a certain necessary
37:10fungibility to the terms,
37:12because to have become as I was
37:14for a period very fixated on that
37:17would have limited my capacity to
37:19write such a wide-ranging book,
37:21which I ended up feeling was
37:23much more important than.
37:25Writing a more technical,
37:26but perhaps more limited book.
37:30OK. I buy that.
37:34I love that quote from today about pain,
37:39you know, you said, he said.
37:41Everyone gets used to it except me.
37:44You've lived on.
37:47On and off with paint for years.
37:49How was it for you, a writer,
37:52an observer, but also a sharer,
37:55to feel like so much of what
37:57you lived through and felt?
37:59Might not be interesting to others.
38:02Did that scare you?
38:04You mean in terms of writing
38:06the book or or living
38:08or telling your story?
38:10Um. Yeah. I mean, yeah. Yeah.
38:16I felt like this felt like a very high
38:19risk book to be writing in numerous ways.
38:22And absolutely one of those
38:24was I thought, oh, God,
38:25this is like when you wake up, you know,
38:28you're on like a trip with some friends.
38:29And one of your friends is like,
38:30let me tell you about the dream I had last
38:33that it takes over the entire conversation.
38:36Right. So I was very,
38:38very highly conscious of the fact that.
38:41Hey, no one wants to hear you
38:43talk about your, you know,
38:45funny health stuff.
38:46I mean no one.
38:49And B1 of the sort of real writerly problems
38:53I had was that in a sense my condition,
38:57my experience would look very anti dramatic,
39:00right? It took year.
39:01It sort of slowly built,
39:02I would say in the book I got sick the
39:05way Hemingway says you go broke gradually
39:07and then suddenly it's not dramatic.
39:09I don't know when I got sick.
39:11I don't know exactly what's wrong with me.
39:13Even still, I have now I have some
39:16diagnosis that are pretty clear.
39:18I, uh, there's no like big reveal.
39:22It's sort of a slow accretion.
39:24And my, you know,
39:25my symptoms were things like fatigue
39:26and brain fog and they came and went.
39:28So it's like a nightmare from a
39:31narrative perspective, someone who's,
39:33like trained to deal with narratives.
39:35So I had to spend a lot of
39:37time just thinking very,
39:38very deeply about what am
39:40I trying to communicate?
39:42What would make this,
39:44the thinking of the book feel dramatic,
39:47even if the.
39:49The condition itself,
39:50manifestation,
39:51isn't dramatic,
39:51and so I think the real shape of the
39:55book is actually a narrative of.
39:57Reflection and deepening understanding
40:00of everything from mortality to why I
40:05was sick to how I think about meeting
40:07and how I think about care and all of that.
40:10And that that's really the drama of the book.
40:12And I had to sort of create a
40:13drama of thought in the book.
40:15But yeah, absolutely,
40:16I was terrified of of that.
40:17And to the day, you know, it came out.
40:19I mean, even until recently I was,
40:21it took a while to really.
40:25You know,
40:25I think readers responded pretty
40:27intensely to the book pretty quickly,
40:28but I did not know that that
40:30was going to happen.
40:34It must have been hard at
40:35times when you wondered as as
40:37you acknowledged that you did,
40:39that it might be all in your head.
40:41I don't think that happened very.
40:43Did that, did that happen often
40:44and and when it did happen,
40:46how did you manage that?
40:48Because that's just seems to me
40:51like death to your sense of.
40:54Getting better,
40:55yeah. I mean I so when I I talk
40:58a lot in the book about again.
41:01So as I just said I got
41:03sick in this gradual way.
41:04I describe it as being like.
41:07You know when you're at the beach and
41:09you're walking and sort of slowly
41:11getting deeper and then sometimes it'll
41:12just be this drop off and you kind of.
41:14You know, suddenly are in deep
41:16water and the waves are big.
41:17That's what it was like.
41:18So I started getting sick in my early 20s.
41:21But in retrospect,
41:22it's very clear that I was quite sick.
41:25And I should have,
41:26should have been a lot of red flags,
41:28but for whatever reason,
41:30I think I was not great at.
41:33Realizing it was happening.
41:35And I also probably just had
41:38doctors who were a little too
41:41quick to think that I was anxious,
41:43or quite a lot too quick perhaps
41:46to think that I was anxious. But.
41:48And so I spent a decade thinking that
41:51I just was doing a bad job of living.
41:55As I said before, I mean,
41:56and also, you know,
41:57I think if you're a young woman and you
41:59have any history of kind of eating disorder,
42:02I'm not that I had one much of 1,
42:04but just I kept thinking.
42:07I said I'm eating the wrong
42:09food and that's why I'm sick.
42:11Which, you know,
42:12I was having drenching night sweats.
42:13I had hives every day.
42:15I had roaming joint pain.
42:16I had Vertigo suddenly and dizziness.
42:19I painted it all the time, you know,
42:22my hands turned white in the cold.
42:23I mean, just a whole host of things.
42:25I could be functional for weeks and
42:28then suddenly be enervated and find
42:30it difficult to walk around the block.
42:32But because everything was a little
42:34vague and it did come and go a bit,
42:36it was very easy to feel that again.
42:38It was my fault for not managing things.
42:41Correctly.
42:43And.
42:45Yeah,
42:45it really distorted my sense of reality.
42:50100% being that sick,
42:51having drenching night sweats every night,
42:53having to change my clothes,
42:55going to doctors and having them
42:57be like maybe you work too much.
43:00Absolutely distorted my sense
43:01of reality in ways that I'm
43:03still trying to recover from,
43:04and that's something I heard
43:06from a lot of people.
43:08The way I finally realized there was very
43:10sick was when my husband basically was like,
43:13you don't seem OK,
43:14or someone in your 20s who's like,
43:16very fit and eats well
43:17and sleeps well and like,
43:19this doesn't seem typical.
43:21And one day I was driving a
43:23colleague home from Princeton,
43:25where I taught at the time,
43:27and I had actually been doing pretty well.
43:29And I looked at him and I realized
43:32I had no idea who he was.
43:34And like, I knew that I knew him.
43:36I've known him for 15 years.
43:37He's a very famous.
43:38Writer who I've known for a long time.
43:40It's a friend of mine.
43:41I knew I knew him.
43:43I couldn't remember.
43:44He was my colleague.
43:45I didn't know why he was in my car.
43:47I didn't know his name.
43:49All I knew was like, I know, I know him.
43:51It was like waking into, you know,
43:53like a sci-fi movie or something.
43:54And I had to spend the rest of
43:56the Dr pretending that I knew him
43:58so that I didn't freak him out.
44:00That was driving.
44:00I should have stopped the car and be like,
44:02could you drive?
44:03And I thought maybe I'm having
44:04a stroke or something, you know?
44:06So I remember coming home to
44:07my husband and explain that.
44:09And he was like, this is not normal.
44:11Something's really wrong.
44:12And that's where we kind of got
44:14very serious about finding answers.
44:15Yeah. And so from that point on,
44:17I think I never questioned that.
44:19I was very, very sick.
44:21But that first decade
44:22was one of questioning.
44:24What a terrible line. That first decade.
44:29I know, right? Terrible line.
44:35In the when you the waxing and waning
44:38well first before I go into that.
44:41You think the fact that you're
44:44a woman made anxiety come
44:46to people's brains faster?
44:48I mean this always.
44:49Somebody always writes this.
44:51Every time I write about a woman,
44:52somebody in the comments goes,
44:54she would have been diagnosed a
44:55lot faster if she'd been a man.
44:59You know, I spent a long time
45:01trying to kind of quantify as much
45:03as I could what Bender played.
45:05I mean, it's very clear.
45:06I have a chapter called the woman problem.
45:08It's very clear that women,
45:10there's a lot of data.
45:12And also a lot of subjective reports,
45:14and I did a lot of reporting that
45:17suggested to me that women are treated
45:19differently than men in the medical system.
45:22Most of the women I interviewed have been
45:25told they were hypochondriacs or had anxiety.
45:27They all had within 18 months of being
45:31told hypochondriac usually and or anxiety,
45:35a very clear clinical diagnosis
45:37of something like lupus,
45:38rheumatoid arthritis, etcetera, etcetera,
45:40but just hadn't shown up yet on the test.
45:43So they were in these kind of incipient
45:45stage of developing the illness,
45:48but they were getting tests that you know,
45:49we know the odd tests for a lot
45:51of autoimmune diseases aren't.
45:52Great early on.
45:54So I do think being a young woman.
46:01You know, as I try to,
46:02I try to trace the history of the
46:05concept of hysteria pretty closely.
46:08And I do think that when you
46:10have these vague or subjective,
46:11seemingly subjective symptoms
46:13like fatigue, brain fog.
46:15Uh, it's just very easy to have a
46:19kind of history of not taking women's
46:23testimony seriously come into the
46:26room right for the patient as well.
46:28I mean, I think I internalized some
46:30of that so we don't have to be
46:34freudians to sort of just have absorbed
46:37the idea that the body is telling.
46:41A deeper psychological truth
46:42when we don't have an answer,
46:44and that's one of the concepts
46:46I try to scrutinize as well.
46:48One of the body is telling the
46:50physical truth that we just
46:52don't understand yet, right?
46:53What happens then?
46:55Because I don't think we asked that
46:57question nearly as often as we should.
47:00But what I will say is I also talked
47:01to a lot of men and then we're having
47:03problems getting diagnosed too.
47:04You know, it just looked a little different.
47:06For one thing, men on average,
47:08we do have good data saying,
47:09like with autoimmune diseases,
47:10I think it's something like they
47:12go to the doctor for the first
47:14time about two or three years
47:15further into their illness.
47:16So I think a particular structural
47:18problem we have is that women are trying
47:21to be responsible agents on their own
47:23behalf of their health and they go
47:25early and they say I'm not feeling well,
47:27but we don't yet or maybe we're
47:29starting to now have I think.
47:30Some of these better diagnostic tools,
47:32um, women overwhelmingly are, you know.
47:37Autoimmune disease is something like
47:3975% of women experience autoimmune
47:41disease versus 25% men long COVID we
47:44see is impacting women more than men.
47:47I believe MCFS or myalgia can cephalon
47:50myelitis, chronic fatigue syndrome,
47:51which are also right about also
47:53impacting women more than men.
47:54So there's this particular problem
47:57that we have a knowledge gap around
48:00these diseases and we have a habit
48:03of dismissing women's testimony
48:05when they come and are, you know,
48:08testifying on behalf of their own bodies.
48:10And that we know from studying
48:11how cancer patients are treated,
48:13for example,
48:13when they ask for pain medication,
48:15women are more often given sedatives.
48:17Um payment, you know,
48:18compared to men and pain medication,
48:21etcetera, etcetera.
48:22Yeah,
48:23yeah. I mean, the there's a
48:25phrase in medicine that we used
48:28to describe people like you.
48:31Medically unexplored, like you back
48:35right before you had some answers.
48:37Medically unexplained symptoms.
48:39And of course we never add the two words
48:42that are so essential to that phrase.
48:45They are medically unexplained to me.
48:48I haven't figured it out.
48:49Doesn't mean they there is no answer.
48:54Right. Or or yet to be medically
48:58explained symptoms might be another
49:00way to think about it, right.
49:02And that's I think, you know,
49:05I think one of the real intellectual
49:08questions in my book that I'm sure many
49:10of you here tonight think about too is.
49:13It's a real question is what does science do?
49:18What does medical science do with
49:21people whose bodies live at the
49:23edge of medical knowledge and
49:24early in the book I talk about?
49:27Basically, this is the story of
49:28realizing that I was in a body that
49:30lived at the edge of medical knowledge.
49:32And as a result,
49:33all kinds of things happen to me.
49:35And I'm able to describe those things
49:37as a way of reflecting certain kinds
49:39of cultural and scientific narratives
49:41or medical narratives that we tend
49:43to tell because I'm just because
49:44of where I happen to fall in the
49:47spectrum of knowledge, you know?
49:49And that's actually really interesting
49:51to step back from it, right?
49:55It's a real problem because medical science
49:58relies on measurements and objectivity,
50:01and that measurement and that
50:03objectivity has brought us longer lives,
50:05better care,
50:06more accurate care, you know,
50:08all kinds of ethical practices that we need,
50:11but it doesn't know there's.
50:15I think we need to theorize and
50:18think through the fact that all
50:20these people live at the margins of
50:22what we know now more than ever,
50:24and we need to have.
50:25Systems of of thinking about that that
50:27are better than what we have now.
50:31I agree. When you, oh sorry,
50:35can I ask one last question?
50:37When you have these waxing and waning
50:40symptoms that are so characteristic
50:42of so many of the diseases
50:45that you talk about,
50:47how do? How do you explain them?
50:50How do people who have these symptoms
50:52explain them to themselves or to their
50:54families so that it makes sense because
50:57of it probably makes sense in some way?
51:00Yeah. That's a great question.
51:03I don't know that it know
51:05that I've ever successfully
51:07explained except in my book.
51:10You know, there's this way in
51:12which the writing the book.
51:13When the book came out, I was like,
51:15oh, now I finally explained it.
51:18Now you finally understand it.
51:20Yeah, I do, actually. Often.
51:23I often suggest to people
51:25that they send an e-mail.
51:27To people, I do think something about putting
51:30things in words on a page or virtual page.
51:34Allows the encounter,
51:36like the people in the other,
51:39to absorb it and take it without feeling
51:41the pressure of responding immediately.
51:42I think there's a lot of anxiety around
51:45how to treat chronically ill people.
51:47I I think people want to do well,
51:49and then the pressure actually kind of
51:51makes them shut off in a certain way.
51:53But the last thing I'll say is I think
51:55there's a bit also of Alfonso de problem.
51:56That great quote where he's like
51:58pain is always new to the sufferer,
51:59but everyone else gets used to it.
52:00Which is to say,
52:01like everyone in my family husband,
52:03my brothers are used to my health problems.
52:05But like, when I'm having a flare,
52:07it feels entirely new, right?
52:09Or it's almost as bad as ever.
52:11So I think explaining that is sometimes
52:13you just have to stop and put things into
52:16word and say today is a really bad day.
52:18This is what's going on.
52:19I'm not going to be able to do XYZ.
52:21I found that just being very concrete,
52:24more concrete.
52:25I am about my like.
52:28Energy limits and my possible like
52:30I just and not to be resentful that
52:33no one else understands and and
52:35looks out for that has been really
52:37important to my own personal life.
52:39Yeah,
52:40but I think something we all struggle with.
52:42I hear this from people all the time.
52:48Yeah. Did you want to,
52:49did you want to interrupt us?
52:50I didn't want to,
52:52but I just felt like I should.
52:55Just to kind of keep things
52:57moving if people are,
52:58I don't know people are going
52:59to say much beyond 6:15 and I
53:01want to have time for questions.
53:02But this has been really,
53:04really fascinating and.
53:05I have a question for you, Megan.
53:11I keep thinking. I keep wondering.
53:17I know you said it's not
53:19like there were doctors.
53:20To blame along the way who are not helpful,
53:23but as you said, it's also just the system.
53:26But at the same time I'm just want I
53:28keep wondering how different would this
53:31book have been if you'd encountered?
53:34Better doctors early on.
53:36And by better I mean somebody who said.
53:40I don't know what's going on.
53:41It sounds like it's really
53:43troubling you and bothering you.
53:45It may take time to play out.
53:47Doesn't fit into our usual patterns,
53:49blah blah blah.
53:50Like it doesn't fit the narrative.
53:51But I'm here for you.
53:52Like, what if you know what?
53:53If you had encountered people
53:54like that from the get go,
53:56you would still be living with everything
53:58and all of the suffering and the waves
54:01as you described it so articulately.
54:02But yeah, but.
54:03I think that's such a great question.
54:06I, I talk in the book about having this
54:09neurologist who I she's still my neurologist.
54:12She's amazing.
54:12She pretty early on because I was having
54:15these horrible basically it was neuropathy,
54:18strange form of neuropathy.
54:19And she just was like,
54:22we don't know why this is happening.
54:24I'm probably not going to be able
54:26to help you, but I believe you.
54:28You're not the only patient I've seen
54:30with this often they are young women.
54:33I believe you're all telling me
54:35the truth and we're doing research.
54:36If you want to be part of the research,
54:39this is what you can do.
54:40It's probably, again,
54:41not going to help you anytime soon,
54:43but it just was such an important
54:45encounter because I felt, you know,
54:48talking about invisibility.
54:50I felt that my suffering might
54:52contribute to some greater knowledge,
54:54which was deeply important to me.
54:56I just.
54:57I wanted to be seen because I didn't want
54:59my life and my suffering to be meaningless.
55:02I wanted intellectual curiosity.
55:06I wanted my plate to go to the,
55:08you know,
55:08to to to the the pie of
55:11intellectual grasp that was going
55:13to lead to answers for somebody.
55:15But I also think, you know,
55:17your question raises a really material point,
55:19which is,
55:19I think that someone who had made
55:22more space for what they didn't know.
55:25But while articulating their belief in me,
55:27I probably would have been more
55:29forthcoming with and started to speak
55:32a little bit more firmly and honestly
55:34about how extensive my symptoms were.
55:37Because I think one thing that I
55:39heard from every single person,
55:42every single person that I interviewed,
55:44and then I have done myself and I
55:46still do it this that we hide symptoms.
55:52And we hide symptoms because we're
55:54met with disbelief or skepticism or
55:57we see the face of the doctor change.
55:59I have seen it happen.
56:00I've just seen my doctor's faces
56:03change and start to be like,
56:05this can't be true.
56:07And so I think the,
56:09the person who had been like,
56:11I'm your partner,
56:12come back in two months.
56:13Let's see how it's going.
56:14Let's work on, you know,
56:15maybe we can work on your energy levels.
56:17Maybe, you know.
56:20Probably would have given me better
56:21quality of life and might over time.
56:23I might have said I have
56:24these drenching night sweats.
56:25I might have said, oh,
56:26this started after I was in Connecticut.
56:28I was in the being diagnosed with
56:30tick borne illness and treated
56:31for it getting much better.
56:33No one ever asks, you know,
56:34like they're just things that never came
56:37out because of the kind of very quick.
56:41Your cholesterol looks great,
56:42you run, you're probably anxious to
56:45try to try to meditate and do yoga.
56:47And it was like every single time what I got.
56:50Yeah, I'm, I'm.
56:51So on behalf of all of these doctors,
56:55they were nice doctors.
56:56They were terrible people.
56:57I actually feel warmly towards some of them.
57:00They just, we just did.
57:02Yeah,
57:02framework for offering this kind of care.
57:07So you've spent 20 years plus?
57:12Pretending to be well,
57:13to the best of your ability.
57:18You look wonderful now. Here, you know,
57:23on the spectrum of pretty sick to
57:26feeling fabulous, where are you?
57:28Because we can't tell you've perfected this.
57:33Well, it's interesting you ask Lisa,
57:35because when I last saw you,
57:37I think I said I'm doing really well.
57:41And I was, I was doing better.
57:43I felt better than I had
57:44felt as a 22 year old.
57:46And then I got COVID twice this summer
57:49through strange circumstances. But.
57:53And I'm pretty sick again, right?
57:55And it's pretty clear that for me,
57:58things like a virus, viruses in particular,
58:01always trigger not all viruses,
58:03but things like mono. Yeah,
58:05I have a lot of the long COVID symptoms.
58:07I'm doing much better.
58:08I was really sick in August and September.
58:11Like, just not thought I
58:12would take medical leave,
58:13which I've actually never done,
58:16and slowly kind of climbing
58:17back out of the hole.
58:18But, you know, I'm probably at like.
58:2260% and I probably have been at like 85%.
58:25Fifty to 85 being of my of my imagined one.
58:30I don't really know what it's like to feel.
58:34Like my husband clearly
58:35feels like he just doesn't.
58:39You could just move through the world.
58:40Something good doesn't have
58:41to sleep that much, you know?
58:43Can you share cereal?
58:44But I would say, like, you know,
58:46I have to go. I have my life.
58:48I I'm able to be here functioning with
58:50you because I'm very vigilant about
58:53my sleep and my diet and my things.
58:56I know support my particular body. Yeah.
59:00Well, thank you for telling me
59:02something's telling all of us something
59:03that's clearly none of our business,
59:04but I just wanted to acknowledge that
59:07you have been faking it for years.
59:11Happened. And, you know,
59:12The thing is that's really complicated
59:14and this merits another conversation,
59:16another time. But. You know, I,
59:19I they're aspects of faking it
59:21that I wouldn't say faking it.
59:24They're aspects of leading into
59:27what's possible for you and brings
59:30you joy and meaning that even if
59:32they deplete you slightly physically,
59:35I think are very important
59:37right when you can.
59:38There are times in my life
59:39where I can't do that.
59:41And I think one of the challenges with
59:43that disease like long COVID that I'm
59:44so excited to hear about your center,
59:46I think one of the major challenges.
59:48With these energy limiting diseases
59:50is that our impulses to be like
59:52exercise and do the things you love.
59:54And actually that often when I was
59:57sickest with something like ME,
59:59CFS like made me much sicker.
01:00:02And when I first was getting over COVID,
01:00:04I really had to like not stimulate
01:00:07my brain at all.
01:00:09And that is a special kind of health,
01:00:12you know,
01:00:12for the for the patient and I think it's
01:00:15something that we're all going to have to.
01:00:17Learn how to support because it's very hard
01:00:21to really rest in this really deep way.
01:00:26Anyway,
01:00:27that's going to go as far afield,
01:00:28but yeah.
01:00:29Can I jump into a couple of the questions?
01:00:33Absolutely.
01:00:33OK, so here is 1 from Adam Merring
01:00:37patient advocacy groups and social media.
01:00:40Facebook groups in particular were
01:00:41so crucial to learning more about
01:00:43my illness and covering leads and
01:00:45finding competent medical care.
01:00:46Was this part of your journey?
01:00:48Did you explore these groups and their
01:00:50role in deciphering the Invisible
01:00:52Kingdom as you wrote your book?
01:00:54This is about patient advocacy groups.
01:00:56Yeah. Yeah, absolutely.
01:01:00Absolutely.
01:01:00I mean,
01:01:01I think we absolutely have to
01:01:05center the voices of people living
01:01:08with poorly understood illness and
01:01:09probably have all kinds of illnesses.
01:01:11I think there's so much.
01:01:13I learned from other people every day
01:01:16and some of it is about questions about
01:01:19how to live with and manage my illness.
01:01:21And and to leave this question about you,
01:01:23why use chronic illness?
01:01:24It's because part of life for a person
01:01:27with chronic illness is about management.
01:01:29And one of the things that I'm interested
01:01:31in is how the stories we tell affect
01:01:34our ability to manage our disease.
01:01:36And I think that the ways in which
01:01:38patients have been treated as a.
01:01:41Almost kind of like children, right?
01:01:44Like we're we're treated a little bit
01:01:46like we don't really know our own
01:01:48good and we can't be relied on that,
01:01:50you know, the illness is going to
01:01:52make us irrational and emotional.
01:01:54And of course, in any group you're
01:01:56going to find a plurality of responses,
01:01:59but I would say.
01:02:01Some of the people I've met who are
01:02:04patient advocates are the most informed,
01:02:05the most rational,
01:02:06the the least willing to jump to
01:02:09conclusions because who's more invested?
01:02:12So absolutely, those groups have been,
01:02:14I think, also a really crucial
01:02:16sense of community for me.
01:02:17You know,
01:02:18just like you were having a bad day and,
01:02:20you know,
01:02:20I did join some Facebook groups that in
01:02:24the end I laughed because sometimes it.
01:02:27You know, it just felt like there was
01:02:28also a lot of misinformation in there.
01:02:30So I think finding a way for these groups to,
01:02:34you know, finding the right group for you is,
01:02:36is really important.
01:02:38So kind of related is a question
01:02:40from Tyler Nelson.
01:02:44To two questions.
01:02:45What Nuggets of advice would
01:02:47you offer to partners of people
01:02:49facing chronic health conditions
01:02:50or chronic health challenges?
01:02:52And on a similar note,
01:02:53did trends of any kind of rise
01:02:55in responses from interviewees
01:02:57read their close relationships?
01:03:02That's those are two great questions
01:03:04and actually an area of follow
01:03:06up I really wanted to work on and
01:03:08might maybe I will do this right
01:03:10now is talking more to partners.
01:03:12I interviewed my husband for
01:03:14the book and I asked him, OK,
01:03:17so tell me what this is like for you
01:03:19because as I talk about in the book,
01:03:20it put a lot of strain on our
01:03:22relationship and there were
01:03:22times when I needed him to really
01:03:24understand what was going on with
01:03:25me and I didn't feel he did. Umm.
01:03:28So I think that's fundamental
01:03:30piece of advice I have is,
01:03:33is related to the reading I did
01:03:35today which is to remember that
01:03:37though we get good at managing it.
01:03:42Sometimes.
01:03:45It's never fully resolved and it's
01:03:47not static like my relationship to
01:03:49being sick and the sickness itself.
01:03:51Neither of those things are
01:03:53static age all of the time.
01:03:55And sometimes I really need comfort,
01:03:58you know, after being totally fine.
01:04:00And it might come out of the blue
01:04:02and it might be like a small thing
01:04:04goes wrong and I'm beside myself.
01:04:05So it can look unpredictable
01:04:07or good irrational,
01:04:08but it's just about like the
01:04:10moment in which your threshold
01:04:11just can't take it anymore.
01:04:13So I think being very.
01:04:15Alert to that and open to that and maybe
01:04:18inviting conversation around that could
01:04:20be really helpful and also knowing that.
01:04:22The person has to take the
01:04:24lead and and you're here.
01:04:26I think mirroring is one of
01:04:28the most important things.
01:04:30Another thing that one friend of
01:04:32mine has long done that's just
01:04:35been incredible is she doesn't
01:04:37try to solve problems for me.
01:04:39I feel like initially my husband was
01:04:41trying to solve everything for me, you know,
01:04:43he wanted to get the answers he wanted.
01:04:45He would be reading studies.
01:04:47And, and I did appreciate that
01:04:48that did make me feel cared for.
01:04:50But at a certain point I had to say, like,
01:04:52I don't know if you could solve this,
01:04:54and sometimes it makes me
01:04:56anxious and stressed,
01:04:58but you're trying to solve it so just.
01:05:00Being there and saying I
01:05:02see that you're suffering.
01:05:04I'm so sorry.
01:05:05I wish I could do something for you.
01:05:08Standing in the hot sun,
01:05:09let's go stand on the shady side of
01:05:10the street or let me get you a chair.
01:05:12Let me get you a glass of water.
01:05:12It's funny how these tiny things like let
01:05:15me get you water or your favorite drink,
01:05:17it just needs so much, you know?
01:05:19It really, they really do.
01:05:21So I think just remembering
01:05:23the power of small things.
01:05:24But what I was gonna say quickly I'll
01:05:26pay when I interviewed my husband,
01:05:27he said.
01:05:28Which he had never said to me before.
01:05:32I don't think you know how hard it is,
01:05:35how frustrating it is to care so
01:05:38much for you and to be so powerless.
01:05:41You know,
01:05:42and ever since he said that directly to me,
01:05:44it's really helped me understand
01:05:46his own reactions to this and
01:05:48especially when I've been sicker or
01:05:50had to go to the hospital. Yeah.
01:05:54The second part of that question.
01:05:57Or did try any kind of rise?
01:06:01You know,
01:06:02I do think a lot of people felt like
01:06:04partners wanted to solve problems.
01:06:06Yeah, yeah. Sometimes that wasn't.
01:06:10Always what they needed,
01:06:12but there was a lot of variety
01:06:15actually in the answers.
01:06:17Thank you.
01:06:17This I do want to come to this question.
01:06:21There's a question about long COVID
01:06:23and Lisa invite you to answer this
01:06:25as well and James Wright asks to what
01:06:27degree do you believe that long COVID?
01:06:30Is going to be an inflection
01:06:31point and bringing about
01:06:32systematic and structural change from
01:06:34a medical and a societal standpoint.
01:06:36Do you think that the woeful ME CFS
01:06:39funding chronic fatigue will improve
01:06:41as a result of long COVID will?
01:06:43And I guess more most importantly,
01:06:45do we feel that overall compassion
01:06:47for those suffering from complex
01:06:49chronic conditions will begin to grow?
01:06:55I I do think, sorry, I'm going over this.
01:07:01I ohh I have so many feelings and
01:07:04thoughts being yeah, woeful, woeful.
01:07:08MCFS funding yes. I am.
01:07:13I I cycle between being cautiously
01:07:17optimistic and, you know,
01:07:19frustrated that not more has happened.
01:07:23That said, I am in the middle of
01:07:25reporting a long piece about long
01:07:27COVID for the New York Times magazine
01:07:29that is focused on the science.
01:07:31And I can say that the science is incredible.
01:07:33What is happening, the research being done,
01:07:36the speed at which is happening,
01:07:38the way in which. You know.
01:07:42The influx of money from tech,
01:07:44it's extraordinary and like real insights
01:07:47are accumulating in a way at a speed that
01:07:51I did not think was going to happen.
01:07:53So whether those are translatable,
01:07:56whether that research gets translated into
01:07:58therapeutics and the health for people
01:08:00with long COVID is another question,
01:08:02and that's where my concerns enter.
01:08:04How do we translate the science is there.
01:08:06I think we're going to have some answers.
01:08:09Fuller Story is going to take time,
01:08:10but we are going to have things we can offer.
01:08:12People, the question is,
01:08:14do we act with alacrity and speed
01:08:16and agility to offer them and to
01:08:19realize how needed they are to
01:08:21keep people's hope alive and their
01:08:23possibility of their lives going.
01:08:26So I do think we,
01:08:27we really do.
01:08:29We are at an inflection point where
01:08:32we have to talk about urgency and we
01:08:35have to think about harm in a really
01:08:38complicated way that doesn't get mired
01:08:41in bureaucracy, which is to say.
01:08:43And I just watched all of this.
01:08:45I've been reading deeply into the
01:08:47history of HIV AIDS activism and
01:08:49thinking differently about that moment.
01:08:50Because there's that moment where AZT
01:08:52gets rushed out and then it turns out,
01:08:54you know, maybe it's not that beneficial,
01:08:56but it helps some people.
01:08:57It's really harmful.
01:08:58And I think we have to accept that
01:09:01sometimes when we are in crisis,
01:09:03we try things, but, you know,
01:09:06sooner than we might.
01:09:07But why do we carve out that exception?
01:09:09When do we carve out that exception?
01:09:11For what? Drugs, for what interventions.
01:09:13These are conversations we should.
01:09:14Really be actively happening.
01:09:15I think places like Yale is a great
01:09:17place to have them, which are what,
01:09:19what is the harm of not acting
01:09:22versus the harm of acting?
01:09:24What kinds of exceptions are necessary?
01:09:26One way I think about everything
01:09:28is like if things are low risk but
01:09:31the evidence is still accruing,
01:09:32like that's an easier kind of
01:09:34intervention to make than high risk,
01:09:36low evidence,
01:09:37right.
01:09:37But so I I think we're at that inflection
01:09:40point where we need to start having
01:09:42those conversations and I and I do think.
01:09:44The question there is
01:09:45going to be trickle down.
01:09:47It might be limited to some specific centers,
01:09:50but I think some of what we're learning
01:09:52some of the what I'm seeing researchers
01:09:55do right now has implications for ME,
01:09:57CFS, EDS,
01:09:59possibly Lyme disease.
01:10:04I think that actually we are
01:10:06going to see some improvement in
01:10:09in dealing with these these illnesses
01:10:13MCFS because they're part of long COVID,
01:10:17you know so many of these things
01:10:19are going to get attention because.
01:10:21Unfortunately, for better or for worse,
01:10:24there are now lots and lots and lots
01:10:26of people who have these problems,
01:10:28and I think that's going to force.
01:10:30And some of those people are men.
01:10:33And that's going to force.
01:10:35Medicine to take this much more seriously.
01:10:39So I I I'm optimistic
01:10:41because that's my nature.
01:10:43But I also think that having,
01:10:45you know, thousands and thousands
01:10:48of people who have these.
01:10:50Diseases as part of this other long COVID.
01:10:55It's going to be,
01:10:56I think it's going to take us further.
01:11:00Yeah, that's absolutely the other.
01:11:02Just to add to that too like some of
01:11:04the people I've been interviewing with
01:11:06long COVID from my first Atlantic
01:11:09piece back in like March of 2021,
01:11:11our doctors who have long COVID.
01:11:14And you know one of my sources is
01:11:17she's still at work but a couple of
01:11:19her friends have gone on disability
01:11:22doctors who can't work anymore and.
01:11:24You know, she feels like that's she,
01:11:27she's like the structure is still not there,
01:11:29the structure still pushing against some
01:11:31of this, but she's like there's a lot of
01:11:34us who have long COVID and are working.
01:11:37And that is, I think she said to me,
01:11:39it's totally changed how I think about Pops.
01:11:41I used to be a little bit tough on
01:11:42my patients and now I'm like, oh,
01:11:45I see what you're going through.
01:11:50Yeah. I'm going to take this question
01:11:56that was submitted anonymously that.
01:11:58Talks about how medical science
01:12:00relies on objectivity and how that
01:12:03limits Medicine's ability to see more
01:12:05subjective or not measurable symptoms.
01:12:07Can you speak on how that poses
01:12:09a barrier to HealthEquity and
01:12:11what systemic changes are needed?
01:12:13Yeah, I mean that's those are
01:12:15two questions that I'm not going
01:12:17to be able to do justice to.
01:12:22You know, I think a barrier to HealthEquity
01:12:25we see definitely in the gendered aspect of.
01:12:29These illnesses, as we've said,
01:12:30they're poorly funded, poorly researched,
01:12:33and we have a lot of women who have,
01:12:36you know, even something like
01:12:38autoimmune diseases where there's
01:12:40still a lot of research to do and so.
01:12:43There's this kind of perfect storm
01:12:45of things meeting that I do think
01:12:47often women are getting worse care
01:12:50because we know less and we've
01:12:52invested less and we distrust women.
01:12:55We certainly know, too,
01:12:57that we do a bad job of delivering
01:13:00equitable care to people of color.
01:13:03And some of my research suggested that
01:13:05women of color in particular were,
01:13:07you know, and we see this in studies of,
01:13:10like, cardiovascular interventions.
01:13:12But that my subjective research so far
01:13:15suggests that women of color were getting
01:13:18diagnosed much later with autoimmune
01:13:20disease than white women were, you know.
01:13:23So if the problem is there for white women,
01:13:24it's even worse.
01:13:25For women of color,
01:13:27I'm really hoping some people are doing some
01:13:30granular database research into this because.
01:13:34I'm concerned there's a lot of
01:13:36people just not getting diagnosed.
01:13:38You know,
01:13:38they go and they say this and that and
01:13:41they just get dismissed and then there's
01:13:43not a lot of follow up necessarily.
01:13:45So I think we need.
01:13:49We need that only to be more.
01:13:54We need to have different frameworks,
01:13:56right?
01:13:56And we need to have a framework
01:13:58of understanding that Women's
01:14:00Health is very complicated,
01:14:02that problems in Women's Health can
01:14:05start young even when you look healthy.
01:14:08You know,
01:14:09there's a lot we need to understand,
01:14:10I think about the interaction of
01:14:12hormones and the immune system and all
01:14:14of these things and I'm hoping again that
01:14:16long proven research brings some of it.
01:14:17But yeah, we.
01:14:19Your question is an important one
01:14:20that I can't do justice to you,
01:14:22except to say I think these are issues we
01:14:25need to think deeply about and needed to.
01:14:28If you're up for it,
01:14:29I'm going to give you 2 more questions
01:14:31and then we'll call it a night.
01:14:33OK, so one question that's.
01:14:36Kind of different from the the ones
01:14:38that have been tossing your way so far.
01:14:41It's just about medical records.
01:14:42And how did you keep your records straight
01:14:45when you were going from Doctor to Doctor?
01:14:47Yeah.
01:14:47If they're not in the same system.
01:14:50Like,
01:14:51yeah.
01:14:52Well,
01:14:52they were often paper because it
01:14:54was before electronic medical when
01:14:56I was really going to doctor and the
01:14:58doctor from doctor to doctor, sorry,
01:15:00I was offered getting printouts would
01:15:03have been like between 2005 and you know,
01:15:072000 and.
01:15:0814 or something.
01:15:12So I had printouts of everything that
01:15:14I had organized and all these files,
01:15:16and I would, you know,
01:15:18and I xeroxed all of them.
01:15:20If I were bringing them to a doctor,
01:15:22I didn't lose them.
01:15:23Although once I did,
01:15:23like,
01:15:24I had to see a infectious disease doctor.
01:15:26And I just was addled and I left
01:15:28a whole bunch of records and now I
01:15:30just don't even know where they are.
01:15:32So yeah, I would print.
01:15:35I would have, you know, the offices would
01:15:36print things out for me, or I would.
01:15:40I guess if they were in, yeah, I've only.
01:15:42These days I haven't had to like move
01:15:45medical records from one, you know,
01:15:48electronic system to another.
01:15:49So I guess you could print those out too,
01:15:51right? But I will say this has
01:15:54changed because of legislature.
01:15:56I mean I had doctors who would
01:15:58not give me my medical records,
01:15:59one of them said.
01:16:03Well, I don't think you're going to
01:16:05understand very much about what's in them.
01:16:07That I would say.
01:16:09Went to Yale University and
01:16:11graduated Magna a little snippy.
01:16:13That's like, I'm pretty good,
01:16:15I'm a journalist, I'm pretty good.
01:16:16I'm in. Another was like,
01:16:17this is just going to make you anxious,
01:16:19so I'm not getting them to you.
01:16:22So about the diagnosis was I had
01:16:24anxiety and then you know or you know,
01:16:27then it was like if you read this,
01:16:29this was actually someone who thought there
01:16:31was something physically going on with me.
01:16:33So I think that's, you know,
01:16:35at least something that now we all have a
01:16:37right to our medical records, thank goodness.
01:16:39But organizing they'll be keeping
01:16:40track is really important.
01:16:42So I don't have great,
01:16:43I don't have great solutions to that
01:16:46medical electronic problem, sorry. OK.
01:16:49And so we'll just do one more question.
01:16:51Umm, thank you everybody who
01:16:53stuck with us and thank you Lisa.
01:16:56And Megan.
01:16:56This is a question from Zoe Adams,
01:16:59who is a graduate from this
01:17:01school and a resident right now,
01:17:03actually an intern and she says
01:17:05she's a doctor early in her career.
01:17:08She really relates to what you've
01:17:09said about patients shutting
01:17:10down and masking their symptoms.
01:17:12Do you have any suggestions about
01:17:14how to best communicate early on in
01:17:16the patient doctor relationship that
01:17:17you're open to hearing them out and?
01:17:19Building trust in the system that
01:17:21has traditionally wronged them.
01:17:23So it's such a great question.
01:17:25I mean,
01:17:25I think being really direct the way
01:17:27you just were would be amazing.
01:17:29I would say my neurologist and
01:17:32my rheumatologist,
01:17:33my neurologist was to see me
01:17:35since I was like 2425.
01:17:37They both are just very open.
01:17:39They just speak it really clear that.
01:17:42They understand.
01:17:45That.
01:17:47You know,
01:17:47there are still things medicine
01:17:49is learning about the human body.
01:17:51And that their job is to care for
01:17:54me and help me figure out how
01:17:56to manage my symptoms and that
01:17:58they're open to helping me manage.
01:18:00And so my rheumatologist will always be like,
01:18:03is anything else going on that you
01:18:05forgot to tell me about or that,
01:18:07you know, doesn't seem like a top priority,
01:18:11but just you want to let me know
01:18:12so we can keep an eye on it or
01:18:14I can help you with it.
01:18:16But I think also just being really
01:18:18direct that looks sometimes
01:18:19patients feel they can't tell us.
01:18:21Everything. And I really want you to.
01:18:23I'm here to help you. And then just.
01:18:26I think that open,
01:18:27empathetic warm goes a long way.
01:18:29I mean,
01:18:30sometimes my rheumatologist and I
01:18:32have a lot of weird autoimmune stuff.
01:18:35And we're not medicating a lot of it,
01:18:37but she'll just be like, how's it going and.
01:18:40She'll say, look, here's the plan.
01:18:42As soon as it starts bothering you enough,
01:18:44you call me, we'll write the prescription.
01:18:47This is the plan.
01:18:47But we don't have to do
01:18:48it now, you know. So she's just.
01:18:51Conditions like, I'm so sorry, just I
01:18:54think creating that war builds that trust.
01:18:57And a sense that there's a different plan,
01:18:59that it doesn't involve medication from
01:19:01day one, but it doesn't involve having
01:19:03to have three more doctors appointments
01:19:05before you get relief might also elicit.
01:19:08It's really nice when you said that,
01:19:10looking straight at the eye of the camera,
01:19:12like I felt like it was me as the patient.
01:19:15You were the doctor and I felt
01:19:17taken care of and cared about.
01:19:18So that's really nice.
01:19:22I like how much just someone saying,
01:19:23like, I'm so sorry and yeah, like,
01:19:26you know, I feel like I could really
01:19:29go to her and tell her things, OK.
01:19:32I don't feel she's going to judge me,
01:19:34you know?
01:19:38Yeah. Yeah. Thank you. Lisa,
01:19:41do you want to say anything
01:19:42as we bring this to an end?
01:19:48Umm. Gosh, you know, Megan,
01:19:51you have thought so deeply and
01:19:55wonderfully about these complicated
01:19:58issues that I'm just about to,
01:20:00you know, jump into. Mountain I.
01:20:06I'm I'm really grateful for your book,
01:20:09and I'm really grateful that you're around.
01:20:12And I'm really going to totally pick
01:20:14your brain about the science of long
01:20:17COVID so we usually can just be prepared.
01:20:21Over here, for that I it's I was
01:20:23saying to my husband, I was like.
01:20:25The strange thing is I might have
01:20:28talked like to more researchers
01:20:30than anyone else in the country.
01:20:33I've gotta feel like, hey,
01:20:34this is what they're saying.
01:20:37But yeah, I'm at Lisa.
01:20:39Thank you for being just the world's
01:20:42most incredible interlocutor.
01:20:43You have now done this twice for me,
01:20:45so thank you.
01:20:46It's always ramifying for me
01:20:47to have these conversations,
01:20:49but it's just an honor
01:20:50and pleasure to be here.
01:20:51I this is what matters most to me.
01:20:54To be thinking with other
01:20:56minds about these problems.
01:20:58So I'm really grateful for everyone for
01:21:01coming out and and for having me the program.
01:21:05And he's in medicine with
01:21:06some wonderful program.
01:21:07Thank you for letting me come speak.
01:21:09Thank you both so, so much.
01:21:11Thank you ASL interpreters
01:21:13and Karen and Duncan.
01:21:16We'll see you next time.
01:21:17Take care,
01:21:19everybody.
01:21:19Thanks everyone.