The Invisible Kingdom of Chronic Illness

now America dissected is brought to you by the de Beaumont Foundation. for 25 years, The de Beaumont Foundation has worked to create practical solutions that improve the health of communities across the country. the foundation advances policy, creates partnerships, strengthens systems and Improves communication to give everyone the opportunity to achieve their best possible health. to learn more, visit debaumont.org

A judge in Alabama rules that frozen embryos are children, Florida Surgeon General plays down the risk of measles amidst an outbreak. Epidemiologists estimate that Israel's destruction of Gaza could take another 85,000 lives in the next six months alone. This is America dissected. I'm your host. Dr.

Abdul. I'll say it.

Think about the best conversation you could have in 10 minutes. What would it entail? What would you discuss? How much information do you think you could actually communicate? now, step back?

Consider the fact that the 10-minute office visit has become the standard for the way most health care is delivered in this country. That means that people, many times with multiple ailments what doctors call problem lists, Several diagnoses long are trying to fit conversations about life and death into 10 measly minutes. That's become America's new normal when it comes to health care. It's become what we all just expect. Now, imagine that you're experiencing excruciating pain that comes and goes.

you don't know what's causing it. You can't predict it. It's not life-threatening, but it makes you feel like you want to die. You've been having it for months and you want answers. is 10 minutes really enough?

Put yourself on the other side of that 10-minute conversation. You're a physician with a packed day, your five patients into your day and you're already running behind over lunch. You'll try to pare down that ever-growing list of messages in your patient portal and you've got this patient That's got a set of symptoms with a differential diagnosis. Doctor, speak for the list of things that could be causing this a mile long and they want relief, and you know that in these 10 minutes you can't give it to them. Frustrated by this interaction, you walk into the next one and the next one after that.

this system, designed mainly about generating RV use or relative value units, a Measure of physician output designed to equalize across various kinds of health care, It doesn't dignify either patients or doctors, But it's particularly bad for people whose ailments don't fit inside a usual box, people whose ailments sit at the outer edge of what we understand about what makes a body sick and Why don't we know it? Well, a lot of that goes back to the way that science is done. Remember, science is a process designed to take bias out of the pursuit of knowledge. but there are two places where bias tends to sneak in at the beginning of the process and at the end. at the beginning, bias Shapes the questions we even ask and at the end it shapes the way we interpret our study results.

but while there are some awesome scientists out there doing great research, driven mainly by the pursuit of knowledge itself, a Lot of the scientific pipeline is girded to the medical system, The one built around creating neat and tidy check boxes that can be easily built and monetized by the behemoth corporations that make up our health Care system. the more monetizable, the better. It's why so much attention is given to diseases that require regular treatments throughout folks's lives. Audioimmune disorders don't fit neatly into a single 10-minute office visit, nor are they diseases that we understand much about. and yet one in ten?

People are affected, and that number is rising every single year. for millions of people who struggle with them, They can be deeply debilitating, But for many, particularly those whose illnesses aren't easily diagnosed or for which there isn't much treatment, Part of the agony isn't just the pain or dysfunction. It's also the anxiety and lack of knowledge. it's the fact that you know, it hurts, but don't know why or how long or where, and That all that is exacerbated by the fact that you don't get enough time with your clinicians, Nor do your clinicians have the space or ability to really work through this with you? That was today's guests experience too.

for nearly a decade, Megan O'Rourke suffered a series of undiagnosed illnesses and with them the Indignity of a health care system not designed to care for people like her. Her New York Times best-selling book invisible kingdom is both a reflection on her experience and a form of outreach to a quiet, Invisible kingdom of people suffering in silence. just like her, I wanted to have her on the show to share her experience, reflect on what it's like being caught in the gray area of science and Medicine and what she wishes. people suffering with undiagnosed chronic illnesses and their providers understood. Here's my conversation with Megan O'Rourke.

And so as a writer, I'm really drawn to these subjects where I feel that we're telling ourselves a story Culturally that feels to me to be too simple and to be missing some complexity. So there was that immediately. But on an even more personal level, I had this very strange experience of getting sick and having that illness go unrecognized by the medical system for more than a decade and at some point that autobiographical experience just began to feel so incredibly lonely and I had a moment of Thinking. if I'm going through this and I'm, you know, highly educated in an urban area, you know, upper-middle-class white woman, think about the millions of people in America, in the world, who are having similar experiences of becoming mysteriously ill and being met with a kind of curious in curiosity. and I really wanted to get that experience down because I think that People who who believed I was sick thought that the suffering of the sickness was the hardest part.

But in fact the hardest part was having the sickness be rendered meaningless By virtue of the fact that no one believed me. I didn't have a language, a container, a story to talk about this kind of amorphous illness and the symptoms that came with it. So I think those were really the reasons I wrote the book to to connect with what I presumed was an invisible Kingdom of people out there Who were like me, that, as lonely as I felt, we were actually all out there Somehow, and if we could just kind of name the problem, we could come together and start to solve it. I.

Harmony in Being able to find folks who are thinking and feeling the way you do. and I think you know Nirvana as a writer or as a speaker, is when you're able to help somebody find the words to explain what they're feeling. and for a moment you all are sitting in the same wavelength of experience and It's just a, it's a, it's a. it's a really cathartic feeling and I can imagine all the more so Because of the way that you describe your illness is is almost taking away a sense of Your mattering and your experience mattering. I want to step back because you know, the experience of illness is kind of weird thing.

I I try to identify the time at which I realized that, Or when I first became disembodied, and what I mean by that is that when you realize that you are kind of a conscious, That's independent of your body. I think when you're you're a kid, you know, it's gonna sound obvious, but it's I, am me, I am this, this, this thing and that thing is me and it for me. It really wasn't until I sustained a sports injury when I felt the pain of the injury and then realized that I I was having an emotional reaction to My reaction, and at that point I was like, wait a second Like this is weird. Like I'm, this body is not actually what I am. It's, it's the container in which I live, but it, you know, it's sort of separate for me and I, I, I.

That became a lot more clear, even as, like I started to play more sports and you know, You do things like I'm gonna stretch and I'm gonna like Be able to be more limber, or I'm going to lift weights and I'm going to gain muscle and strength, or I'm going to train and I'm gonna get faster and You realize it's just like. okay, well, part of that is the your body itself and it does certain things and it doesn't do other things. and Then part of that is like this mental sort of aspect of like trying to work on your body. And I would imagine that an illness like this, where you don't really have you know, what I'm describing, is almost a certain like recognition of non mastery and then a process of attempted mastery, but when you can't really, You can't really explain what your body is doing, nor can people who ostensibly are experts in bodies explain what your body is doing for you, I Give this really big wind up to ask like When did you start to realize that something was like really, really wrong like that, that there was? something beyond the usual?

I'm sick and My sickness is going to fit into some pattern, and somebody who's an expert at bodies is going to tell me what it is, And there's going to be a neat answer here. When did that really dawn on you and what were the set of experiences and emotions?

I was sick for a long time without quite realizing that I was sick. I had gone to so many doctors to say I just don't quite feel like myself, Right to pick up your thread and only to have doctors say well, you know, all your labs look normal, Maybe you're anxious. Maybe you're stressed. So I had really internalized this idea over time that this kind of changing experience I had of the world was maybe either slightly imagined or I was putting too much stress on it. And there was a quite shocking moment where I was driving home.

I taught at the time. I taught a creative writing class at Princeton and I drove home with a friend. I was driving and I looked over at him and he was a long-term Colleague. I had known him for more than a decade and I had no idea who he was. I didn't.

it wasn't just that I didn't know his name. I knew I knew him, But I really couldn't understand who he was in relationship with me. There was like a whole category of experience that was no longer present and I came home that night and I said to my husband I know we've been wondering if all these strange aches and pains and odd symptoms really are anything. But maybe it's just part of getting older, but isn't this weird? Like, isn't this something unusual for someone who's 35?

To experience. and he kind of got a shocked look on his face and was like, yes, that something is really unusual. So there was that first moment and that helped set me on the path of really seeking more answers and going to more experts. and then there was another moment where I was What in the office of a really wonderful doctor of women's health and for the first time and she was someone I saw shortly After this moment of not understanding who my colleague was, for the first time. I had a physician say to me I believe something really is wrong and that was.

she immediately said it and she said, and I highly suspect you have some kind of Autoimmune disease, including, but maybe not limited to, autoimmune thyroiditis, and that's driving some of your symptoms. we have to see what your labs look like, but let's look at this and.

You know, Sure enough. I have that disease. I had some other markers. She was like, I'm gonna give you medication, We're gonna, we're gonna treat you and you should be feeling a lot better in six weeks. Six weeks later.

I was in our office. I felt moderately better, but not noticeably better, and That was when we started to have a conversation about. well, an autoimmune disease is something that might really permanently change your life. It might leave you feeling 80% at best. It might mean reshaping your identity and, by the way, It can come and go and different things can trigger it.

and maybe you need to stop eating wheat. and really, in that office, And as I walked out, I thought okay, This is not the kind of quick fix that I've been led to kind of believe, you know, We so often can offer people, right? This is something else. This is a different kind of category of disease. And in fact, it turned out there were other things going on that we, she and I didn't even realize at the time.

but that moment was the moment of walking through the portal into a different kind of experience of health and illness. then Then that which I sort of simplistically had grown up with. I.

Yeah, that people can ascribe to cancer. if I say you have a cold, that that's a different narrative. It's okay. You're gonna be kind of stuffy and feel kind of crummy for a couple days, and then a couple days later you feel a little Bit better and then after that you're gonna feel fine Cove. it is a narrative.

But what's interesting is that? Those stories tend to. they tend to end in a certain kind of way, and there's the clarity of that. narrative is actually an Endpoint. it's like a sort of sense of control over the outcome that you give to people in a diagnosis, the the challenge with what you shared is that This doctor, who, by all accounts, was a caring, Thoughtful, engaged, curious physician, gave you a Diagnosis and then, in some respects, the narrative you came to expect was like dashed by that diagnosis.

How did that contrast play out in your mind? like after those six weeks when you started to realize okay? You know, I'm in for something That's very different, and even though I had thought that this Naming of this disease gave me some sort of mastery over it, what I'm starting to realize is actually, I'm not gonna have that. Walk us through that moment. and what goes through your mind in in a moment of like lack of clarity like that You've.

you've been experiencing all these symptoms. You think it's gonna go away. This is the moment of catharsis and then not, not quite. How does how does that? how does that play in your mind?

I Will say that what I realized, coming home from the doctor's office pretty much that day, Was that there was going to be some kind of identity shift, right? I am. I did intuitively understand that the diagnosis was no longer the end point. It was now a kind of beginning, or even Actually not a beginning, a point along the way, a kind of marker, and That I was gonna have to start to build a new kind of story, and a story that went beyond the diagnosis. And I think in a sense that that's the moment.

I really began thinking about this book, the invisible kingdom. I didn't know it at the time. I couldn't have said oh, now I'm thinking about a book, but I immediately became really interested. It's like you describing having a reaction to your reaction. I began having a reaction to my own reaction and thinking this is different.

This is not what you know. an easily measurable, easily treatable disease like those I've had, or injuries I've had in the past, was like I'd had surgeries, you know, go in, they fix the problem, you go home, you recuperate, Then you're better. This was different and I began to start to think about what it meant to have both an Autoimmune disease and what the symbolism of an immune system turning on itself did or didn't mean, and I began to think about chronic illness and this idea of What kind of story is out there? or is there a sufficient story out there about chronic illness? Right, in a kind of quick fix culture.

Then this isn't. This goes. this aspect of our culture goes far beyond medicine, right? Our whole culture, in America at least, is about get in there, Just do it. Whatever doesn't kill you makes you stronger, like you suffer through it, you fix it, you make it work.

and In this period of time, by the way, I was really really sick, but I would like I had been a runner for a long time and I would drag myself out of bed and try to go running pretty much every day and would make me. it made me sicker, and sicker didn't work, but.

Very would just say that the process of coming to understand that I was going to have to start to tell myself a new story Was a slow one, you know, I understood, I had to tell myself that new story, But what the new story was going to be? my actual acceptance of it, The new identity that I was going to build in response to Having a diagnosis. all that took a lot of time and there were many, many steps along the way, you know, Including, by the way, I'm not just a sick person, Right, and and how do I live with the kind of uncertainty in my life? How do I make a life? How do I plan?

How do I build a family? How do I continue to work none of which I could really do at that time because I was so sick still, but that It was a kind of entering like a murkier world rather than a world of clarity. and yet there was a clarity in Acknowledging for the first time that murkiness, that in them, despite this technological age, We live in, where we know more than ever about the body. I was somebody whose body was at the edge of medical knowledge at that point, and and that's what I began to feel.

I I Had cut myself, and it was. it was, it was bleeding and she looked at me. She said, Bobby, you're not crying. I was like, I know She's like, why are you not crying? Doesn't it hurt?

I said, yeah, it hurts. She's like, okay, but but but what when I get hurt, hurt or I get cut, I cry. And I said, how many do you cry because it hurts? or do you cry because you think it's going to keep hurting? mmm, it's a great question, and It was a moment of recognizing that, you know, I think about getting injured now, and it unfortunately doesn't happen all too uncommonly, but there is.

there is this Anxiety that comes out of okay. How long is this going to take and am I fully going to regain function? and so so much of what we characterize as?

pain is The fear of loss of function and then the loss of control, or at least knowledge about the future. and so much of what I really appreciated about your book is that you dissect that set of feelings in a really important way, and it's almost like you. you, I don't want to say you made peace with it. It's a. you know, peace is not the right term, but it's almost like you said.

you went. you realize this is not a battle. this is going to be a Long, protracted war, and war may not even be the right analogy, because it doesn't. War implies that there's a winner at the end, or at least you know. One would think that there'd be a winner at the end, although one could get very philosophical about whether anybody wins wars, but but but this notion of a, this is a new normal and I have to get comfortable with the lack of knowledge of where this is going.

I Other readers, How much of your experience that you shared? Was about trying to get at that question of what do you do with the implicit anxiety of not knowing?

Think that I.

How can I put this? I think it became very clear to me that to Really be present for what was happening in my body was going to mean a kind of radical rearranging of the furniture in my mind. of all these received ideas that I had about Having control over my life, you know working hard and getting the outcomes. I wanted, you know I was pretty young when I got sick I mean, I was sick in my 20s, then I really got the diagnosis in my early 30s, and But I had lost my mother, who died at the age of 55 from colorectal cancer, pretty suddenly and surprisingly I mean not suddenly. she lived with it a long time, and I Think I already knew that that life doesn't quite go the way we plan it, to Say the least.

and so I do think that part of what I really wanted to do in this book is Carve out a space where those of us who have lived in this invisible kingdom Can actually reflect some of the really important philosophical and existential questions that come with being ill, in a way that I found very hard to do before I had the diagnosis or when I was with people, my physician, partly because those encounters were so Charged with my own desire to be believed, my own desire to be recognized and validated. It took so long to get that recognition and validation that once I started to understand Okay, I have these diagnoses. I am sick, but I'm also alive. I Felt kind of ferociously that I wanted to lean into that space and reflect on it, Because the ability to reflect on it had been almost taken away from me by science's Inability to recognize what was wrong with me. And so I think, first and foremost.

I I wanted to try to write about the ways that, Although we absolutely need medical sciences, objectivity, its desire to measure, its desire to name, there is a feature of experience that is subjective, that changes day to day, hour by hour, minute by minute, you know, you catch me on a day where I'm Having a lot of symptoms and I feel that sense of I don't control anything, Like I would just want to play in the snow with my kids. And why did that trigger this reaction? and maybe I'm really sick and this is so scary, Right, and then I have to kind of talk myself down from it. So this is a whole part of experience that's barely talked about in the medical, in the medical encounter.

There's not time, there's not, space, there's not, and so I Wanted the book to contain that, for for those of us who live in that world.

This month, the book club featured essays. the book invisible, no more voices from Native America. You can catch the conversation by signing up to join the MCF book club for free today at Casey grants org slash book club. That's e, a s, e, y, g r a n t s dot org slash book club. The US health care system, as we talk about all the time here, is confusing at the best of times and opaque at the worst Trade-offs.

is a podcast that digs into health care's toughest policy challenges, untangles the pros and cons of possible solutions. It advances the conversation in a way we can all understand. I was Dan Gorenstein, has been a health care reporter for years and does a stellar job Examining the data with people who best understand it and putting a human face on that data by telling the stories of those who are Affected by health policies. subscribe to trade-offs wherever you get your podcasts.

Set of aims and intentions and Doctors, health care providers, get frustrated when patients don't fit into that box and there's a lot of different parts of it and because doctors are, are motivated, or providers generally are motivated by See a problem, solve a problem, move on. we've allowed a health care system to be built around that model and monetized around that model, and There are a lot of places in the book where you demonstrate just how broken that model is. I want to ask you, you know big picture? What was what was your best experience with the health care system, the things that weren't really right? and then what was your worst?

Young neurologist. I'd never seen her before. I was having very strange.

Neurological symptoms that felt like little, like pinpricks all over my body, and I had no idea what this was. no one had. finally, I end up in her office and She basically said to me I don't know what's wrong with you. I'm Not sure I can help you. In fact, I'm pretty sure I can't help you, But I believe you, I suspect you have some kind of small fiber neuropathy.

I can put you into some. we can do some tests and it will help our research, But it won't let me help you. but no matter what and it might not be that because there's these aspects of it are not quite similar to that, but most of I believe you, and I've seen other young women like you and I can't tell you I always bring up this example because she did Not nothing ever transpired. We, I didn't end up doing the test at that point. She stayed my neurologist for years.

She's amazing. But the work of naming, Validating, recognizing and kind of containing, creating space for us both to be held in that container of not knowing It's like I felt giddy on the way home. I felt totally changed by this encounter because I felt I felt human right? I felt that I didn't to humans have talked to each other, and I do think that that's just. It's really not understood how profoundly important that is.

It's maybe especially in the experience of chronically ill people, right where we're living with this day in and out, And so to have that recognition matters. So that went well, I you know, I think.

There were other moments that went really well, and they all have in common this theme of listening and caring and believing a little bit and believing that there might be things about My experience or my body, or what was happening in it, that couldn't be picked up or hadn't been picked up on tests? Did you also ask what was the worst experience?

You Know, one of the worst was when I was really quite ill and I my insurance changed. Okay, this is part of this broken health care system. I changed jobs, my insurance changed. I left my GP of many years wonderful, empathetic, you know, always kind of believed, even if we never found anything wrong with me Saw this new GP and I was really not feeling well, And I said as much. and he said, well, let's do some tests, Maybe something's going on, and basically everything came back looking totally great.

And he, I was a little low on iron, but within normal, and he basically was like I think you're just anemic from having your Period, so I don't think we should really worry about this. and I was this is on the phone and I said to him But I've always had my period and I've never felt like it was like I've really gone off a cliff. Something has gone wrong and we just couldn't talk to each other. There was no time, There was no ability to pursue, there was no desire to pursue it and we didn't know each other. we didn't have a relationship.

and That's kind of what stranded me there, being really sick for about a year before I kind of mustered the courage to then go See another doctor, because, of course, as a patient, many of us really see the doctors as experts. So when the doctor says this to me, I'm 30 years old, whatever I am, I really took it seriously and I thought I'm imagining this something's wrong with me. I am complaining. I shouldn't pursue this, so.

What's can be dangerous about these encounters, or Complex for the patient is, is how much the words, Even brief sets of words, really matter to us and kind of shape our shape, our story.

it is like science is the best tool we have for knowledge in, You know, in humankind it is like really one of the greatest systems of thinking inventions That that we we have. the thing about it, though, is that we mistake the power of the tool for the outcomes of the tool, and We assume that because science is so powerful that science has answered everything, even though, for the most part, science offers us frameworks that we interpret within, and, You know, in medicine, one of the things that you know, hits you pretty quickly. He from like day one of medical school, is it? there's just a ton. We don't know.

I mean, I remember sitting in my Embryology class being like it is a miracle that all that humans get born in the first place like it truly a miracle. and Like we're, we're understanding all of the odd cell signaling that gets cells to turn and curl, just so like to give us, you know, a Functional body and we understand what happens when that fails. the reality of it is most of the time when it fails. You just don't have a pregnancy to begin with, right and sometimes when that, when it fails, it fails in a way that can continue to sustain human life. But but all this is to say that I think When we get it wrong, whether it's in a patient interaction or it's in public health generally, It's when we over interpret What we think we know and we offer a set of answers that are actually what we call off data inference, meaning We have a framework, We're gonna fit someone tightly into that framework, even though they may be at the very edge of what we, what we think we understand, Rather than having humility about what science can, can actually answer, but the other part of that is also you know, you're you, you are a woman and in the way that our archetypes about how we think about pain and how we think about disease play, I Want to ask you, I mean How much?

More likely do you think you would have been? To be believed if you didn't present as a as a young white lady?

I like evidence. I like facts. So there's part of me that will never. I can't fully answer that question. I don't have the data for it, but it certainly was my.

Intuition that my being young and

Looking fit quote, unquote To my physicians led to my being dismissed that the words I was saying did not translate it. And what do I mean by that? That often what physicians, especially ones I was meeting for the first time, focused on was that I was slim, my cholesterol looked great, I didn't meet obvious categories of problems and I had a really high-pressure job Initially when I first started having mild symptoms, and so that probably therefore, I was anxious. right that I fit into this archetype of One of the so-called worried. Well, it's just a term that will be here, you know, in sociology, to describe people who are Actually, well, but are worried, maybe something's wrong and are anticipating.

and you know, I know it's an interesting Conundrum and a kind of culture where we can prevent and test more than ever. right? We can look inside our bodies. So maybe we should look inside our bodies, and sometimes people fixate on us. Anyway, but but also this legacy of hysteria, right, this idea that the body is speaking, The stress of the mind or the trauma of the mind, felt very present in every doctor's office with me, And so when I was writing the book, I began to really research this and try to find data to describe, if not what I could know about my experience, but what we knew about others.

and You know, as you see in the book, there's quite a lot of data showing us that. You know, although medical science and I agree with you Infinitely that science is one of the best tools we have for knowledge, Although it aims to be, you know, objective and fair, the practice of it is not always right and we bring biases. we all bring our biases into all spaces and and Medical science brings biases into the room, and that led to the fact that it was hard. It is, we know, we have data that women are just less likely to believed about their be believed about their pain levels, About their their medical history, about, subject, so-called subjective symptoms like fatigue, which often can't signal a real problem. So, you know that that was in there in the mix with me, and it became pretty clear to me pretty early on, and I became really conscious of trying to present myself as being very rational and reasonable and Remember very vividly a rheumatologist describing me as a patient with a pleasing affect.

he dictated his notes in the, as I have said, sitting there and I was like, yes, I'd like, persuaded him that I'm Reasonable, right, but that's a really complicated set of kind of reactions to reactions and and and trying to. We often, I think, as patients walking into a room or people with illness walking into a room, have to think about how others are Going to respond to us in that medical encounter.

Had you had to worry about some of the other? Ways in which you could be discriminated against by the system. Yeah. Yeah.

I really knew how to talk to people and get information and get referral. I really knew how to work the system. at a certain point I didn't go in knowing that, but I had the tools to learn how to do it And it's very clear to me that that you know, I got mostly better right. better is a complicated word. I still live with chronic conditions, but I went from being someone who's Who in essence felt that that the promise of my life had disappeared and was no longer accessible to me, To now feeling I have an incredibly rich life, full of.

you know, my kids, my work. You know, I'm living a rich life with limitation. I Only living that rich life because I persevered so hard. right that's not quite English, But I worked so hard to keep getting answers and one of the people that I interview in the book.

Who was the former head of the Permanente Federation? I think that's what it's called Said to me. I asked him this question. I said what if you're not me? you don't have, you know, really good insurance, You don't?

you can't take many days off from work to go, sit in a doctor's office and wait to be seen What happens to those people. and I will never forget what he said. He said. those people Suffer alone, they fall into the cracks and they suffer alone and we don't know how to help them. and I wrote the book because of that, you know, I wrote the book because I thought I.

Can write the book and there are people who who didn't get to the end of their story Or or the place in their story where they could reflect in the ways that I can. So we really do need to kind of name that and come together to think deeply about how to change that fact.

then then then you you think we should, and I want to ask you how much of that do you feel like, is a Function of whose diseases we pay attention to in the first place. I?

we Just understand less about Women's biology. we have done a lot of testing on male lab animals, right? But I think there's a second piece, and this is about this idea that you brought up, which is large, which is almost a kind of like ontological idea, which is

What questions are we asking? and what questions are we not even thinking to ask? because there is a paradigm of thought in place That we arrived at. that looked like scientific progress, that looked like knowledge and was, But perhaps turned out to be limiting our ability to see certain aspects of human biology and experience. so what I mean by that is that One of the great Moments in scientific history is the advent of germ theory, right the moment when we start to understand that many diseases are called caused by Distinctive pathogens that produce very similar responses in people and can be described by similar sets of symptoms.

We also around, you know, not long after we really develop an understanding of germ theory, start to be able to measure more than ever. These two things come together to really form a kind of concept of disease That was quite dominant in the 20th century, where they were what were called specific disease entities and they looked really Replicable body after body, right? That's one of the definitions. That's what I've coaxed postulates is the replicability of How a pathogen behaves in the body, but, as I think kovat has really dramatized to us quite vividly, It's turning out to look like Pathogens. the way people respond to pathogens can be more variable than was at first thought, and in some subset of people, The the encounter with infection can trigger a kind of long-standing immune response that we still don't fully understand, Right.

Is it? is it autoimmune? Are they? Rampant inflammation. We're looking at long kovat.

People are trying to study it. There's still no clear answers, But a lot of clues. so so there was this kind of paradigm about infection, associated illness, that was in place for a long time. That led people not to ask the question of why are some people saying after they have a virus? Hey, I really don't feel good for a long time.

And in recent years, we're seeing suddenly a lot of science show that. Oh, actually people with MS Do seem, I mean people who have Epstein Barr virus. There does seem to be a connection to some subset of those people developing multiple sclerosis. Right, but these questions either weren't asked for a long time or were sort of dismissed for a long time, and so I do think that's part of why this category of disease, including autoimmune disease, that I talk about is, As one researcher put it to me, about a decade or two behind diseases like cancer.

Functional media patient. These are where Most of the scientific breakthroughs and so much of the pain and pathology sit, and if you're uncurious about them, you miss out on the opportunity. and that lack of curiosity can manifest itself as just a lack of scientific curiosity, or it can manifest Itself as a lack of interest in the experiences of people who don't look like the 70 kilogram man, and those two things become self-reinforcing. You mentioned feeling a lot better, and I'm really grateful to hear that. I want to ask you, you know, as a last question, what would post invisible kingdom Megan O'Rourke?

Go back and say to that young woman sitting in that room with that neurologist about what her experience would be I.

So I think I would say, you know, trust in yourself and also As alone as you feel, you're really not alone, for better and for worse, But that there is something quite powerful about recognizing.

That illness is not something that isolates us. It can be something that brings us together in conversation, And I've really felt that since the book was published, just talking to people, hearing from people and seeing Especially being able to have conversations with people in the medical system, such as yourself. So I think just that the hope of.

Knowing that you're not alone is a really important piece.

when folks can't conceive, naturally they turn to fertility treatment. Contrary to what most folks think, fertility treatment is a lot bigger than just IVF. before IVF, specialists will try other modalities to identify the barriers To fertility. should those fail to trigger conception, specialists then turn to IVF. IVF involves harvesting eggs and sperm and then combining them outside the body.

that sounds simple enough, but involves months of sometimes painful treatments from both partners, women in particular, and Also, it involves tens of thousands of dollars paid for the treatment. IVF is a near miracle. It is done wonders for people who could not conceive and have children because of that process. But given the expense on both the body and the pocketbook, doctors don't just harvest one egg, They often harvest, several with the goal of creating several embryos and implanting the healthiest one, the other embryos. Well, they're cryogenically stored should a couple want to conceive again in the future.

needless to say, There are thousands of these embryos being stored in medical grade freezers around the country and, according to the Alabama Supreme Court, Those embryos are kids. You can't make this shit up now. Let's dissect. Why is this happening? well, Because a small proportion of this country believe that life begins at literal conception, the moment sperm hits egg.

and, whether you agree or you Don't, they want to read their religious beliefs into our laws governing you, never mind the separation of church and state. Remember, this is the same reason why dozens of states have outlawed abortion. It follows logically that if you think life begins at conception, then the moment sperm and egg meat in a uterus or in a tube. That's a human life. So, in some respects, the Alabama Supreme Court here is following this to its logical conclusion, however insane it might be.

But just think about how absurd the logic here is. if embryos created by scientists in a test tube our life, Then folks who are trying to read their theological interpretation into our secular laws are also admitting that scientists can create life Seems to be a contradiction of the broader goal here. No, And then there's the fact that in their crusade to force their quote pro-life stances on the rest of us. They've robbed thousands of couples who want to have kids from the ability to do so. It's nearly impossible to do IVF without creating extra embryos Which, by definition, at the end of the process have to be destroyed?

But what this does, more than anything else, is demonstrate the complete absurdity of the anti-abortion position in the first place. Embryos just aren't children. They don't have feelings or memories, or hopes, or dreams or ideas They don't love. trying to give them personhood rights is itself an obligation of what it means to be human, and in the process It robs the rights of actual humans. Meanwhile, just south of Alabama in Florida.

and given the fact that measles will infect 90% of susceptible people exposed to it, The most obvious guidance is to recommend that any and all unvaccinated people vaccinate, and then anyone who doesn't stays home. Except that's not the guidance that Florida's quote Surgeon General gave. instead, in a letter to parents, dude Specifically reiterated the normal recommendations and then said, and I quote However, due to the high immunity rate in the community, as well as the burden on families and educational costs of healthy children, missing school, Department of Health is deferring to parents or guardians to make decisions about school attendance. So it basically here's the recommendation, but honestly, whatever what the F Letter like, this does nothing but to muddy the waters. It is an explicitly ideological act meant to placate his boss, Rhonda Santas, as politics, rather than to protect children from harm.

It's public health malpractice and it's a reminder of what the force is trying to put ideology over science, just like we talked about last week with the leaders in Ottawa County, can do. Finally, since our episode about Gaza last month, an additional 5,000 people have been murdered at the hands of Israeli bombardment, with no signs of stopping. Then Yahoo has all but ignored growing international pressure to bring this to a close. for our part, our government shamefully vetoed yet a third UN ceasefire resolution and Continues to send weaponry to fuel the onslaught, as we discussed, though the full consequences of the assault don't end with the shelling and bombing. they extend to the destruction of Gaza's water infrastructure and the overcrowding that allows respiratory illness to rip through the population.

Epidemiologists at the London School of Hygiene and Tropical Medicine, as well as the Johns Hopkins Bloomberg School of Public Health, modeled the expected death toll overall under three scenarios an Immediate ceasefire, an extension of the current status quo or an escalation. All of them are grim. They found that an extension of the status quo would lead to 65,000 deaths over the next six months, where an immediate ceasefire could lead to 44,000 fewer deaths 11,000 in total, 44,000 lives that a ceasefire could save. think about that. But as Netanyahu's encouraging into Rafa demonstrated, the bombardment could still escalate and under that scenario, the researchers found that it would take up to 85,000 lives in the next six months, and all of that is a reminder of why we need an immediate ceasefire.

now, 44,000 lives, in addition to the tens of thousands already lost, are on the line.

However, we made those statements because he's mocked Governor Whitmer's press conferences supporting COVID regulations and has supported things like ivermectin and opposed masking.

Don't forget to follow us at crooked media and me at abdul. I'll say it no dash on Instagram, tik-tok and Twitter.

America dissected is a product of Crooked Media. our producers, Austin Fisher. our associate producers are Tara Terpstra and Emily Frank. Charlotte Landis mixes and masters the show production support from Ari Schwartz. Our theme song is about Takai Sazawa and Alex Uguera.

Our executive producers are Leo Duran, Sarah Geismar and dr. Abdul. I'll say it your host. Thanks for listening.

This shows for general information and entertainment purposes only. it's not intended to provide specific health care medical advice and should not be construed As providing health care medical advice. Please consult your physician with any questions related to your own. the views expressed in this podcast reflect those of the host and his guests and do not necessarily present the views and opinions of Wayne County, Michigan, or its Department of Health, Human and Veteran Services.