Episode 159 - IllnessTranscript

[00:00:00] Ellie: Welcome to Overthink.

[00:00:19] David: The podcast where two philosophers connect philosophy to your lived experience.

[00:00:24] Ellie: I'm Ellie Anderson.

[00:00:26] David: And I'm David Peña Guzman.

[00:00:28] Ellie: David. Everybody gets ill. I myself am just getting over a recent cold. You might even still be able to hear it in my voice. It always sounds better after I'm just getting over a cold, you know, like you got that sort of cool lower register going on and obviously, although that's a very minor illness, many of us, including myself, have dealt with more serious illnesses over the course of our lives. Even those of us also like myself, who haven't dealt with extremely serious or chronic illness, at least as of this point. So there's a bit of a strange thing going on when we think about how our society treats illness.

Because even though all of us get sick, it seems like illness is a kind of dirty little secret in our society. Something we don't like to talk about. And this is especially the case when it comes to chronic or serious illness. The philosopher, Havi Carrel, whose work we're gonna be talking about in detail over the course of the episode today makes this point in the beginning of her book, aptly titled Illness. She writes, we are all ill at some point or another. The vast majority of us will die from some kind of illness. So even those of us who don't have chronic illness, for instance, have likely at least one loved one who does, right? We may have been involved in caregiving for them, in mourning their loss when those illnesses have been terminal and led to death and so on and so forth.

So even though everyone's life is touched by it, to some extent, Carrel points out, illness is a dirty little secret that sick people share. It's not something that we tend to bring attention to, and in fact, it can come across as taboo as not appropriate for a polite conversation.

[00:02:06] David: Yeah, we've talked a lot in overthink over the years about social scripts, the social scripts that we have, the ones that we don't, the limits that those we do have place on us. And then the difficulties of moving through conversations in cases where we don't have those social scripts. And I think we suffer from a lack of social scripts for talking about illness, asking other people about their illness and for revealing illness.

And so what ends up happening is that most of the time we go through the world, operating under the default assumption that everybody that we encounter is healthy and feeling well. And when we get signs from their behavior, from the things they tell us that maybe something is not exactly right with them, it's almost as if the rhythm of our interaction with them just comes to a halt and we don't know how to address it.

Do we draw attention to their illness? Do we express sympathy or do we try to show some support? It's really unclear how to broach the subject. But I like the question that you asked Ellie, which is, why is it such a dirty little secret? And if I were to venture an answer, I think I would say that it's first and foremost because illness of course, exposes the frailty of the human body.

Either its vulnerability to outside conditions and accidents, or its intrinsic tendency to break down that is sort of inherent in any biological system. But then a second element to the answer here might be that. Illness always breaks the rhythm of social life, right? We have a certain way of inhabiting the world, of inhabiting our bodies, of moving through the social field and illness, it's almost like an abrupt stop in the rhythmicity of life, and we don't want to face it, and we certainly don't want to draw attention to it.

[00:04:01] Ellie: Yeah, and I think that also coheres with something that. Lot of people with chronic illness will draw attention to, which is the amount of time that is just spent waiting. Waiting in doctor's offices, waiting for news, waiting in some cases to die. I wanna say though, on the point of social scripts, I think you're using social scripts in a way that I might wanna disentangle from a potential misunderstanding because on the one hand, when we talk about social scripts, sometimes what we mean is the kind of actual scripts or narratives that we play out in our day-to-day lives. And when we have an absence of an understanding of things we should say, we might lack a social script from a certain vantage point. That's what you're talking about, not knowing the right thing to say when somebody has an illness or when you find out you have an illness and you need to figure out how to tell your friends.

I think more commonly when social scientists use the idea of social scripts, what they're drawing attention to is the implicit narratives, the narratives that go beyond discourse that we have around certain positions and relations in society. And I think there, we very much have a lot of social scripts around illness.

Havi Carrel in a piece she wrote for The Independent a number of years back, wrote about the way that being labeled a sick person means an implicit sliding down a social ladder. And she writes, others begin to perceive you as weak and unimportant, an object of pity and fascination.

And I think that really encapsulates this deeper social script that we have around illness, which is that if you are ill, you are weak and unimportant, you are an object of pity and fascination. A kind of, some might even say dehumanization, and if not, then at least a diminishment of importance of humanity and of dignity.

And Carrell writes that that was really the most challenging part of her illness. And we'll talk a lot, a bit later about how this shaped her relationships, how it changed them, and so on and so forth. But there's a kind of alienation from social life that people who are diagnosed, especially with serious or chronic illnesses, experience.

[00:06:06] David: Yeah, and when we think about that sliding down on the social ladder, it's really important to underscore that it doesn't happen through ill will, right? It's not the bad intentions of our friends and family. I think it happens largely through assumptions that people make that they think are reasonable, and that in some cases are meant to minimize discomfort for us.

But that ultimately translate in making decisions for us without our input. So for example, oh, our friend is ill, let's not invite them to the park because we don't want them to feel like they have to put a lot of effort into hanging out with us. Maybe we don't wanna bother them. We wanna respect that they're taking time to deal with this illness.

And on a collective level, it then translates into a sudden drop in social invitations. Into less contact from those around you into a lot of doors that typically were open, suddenly being closed to you again, not because anybody wanted to close those doors to you, but rather because assumptions were made about what illness is and the relationship between illness and on the one hand pain and on the other, the possibilities for action that remain available to you.

[00:07:18] Ellie: And this also of course takes place within medical context. So another philosopher whose work on illness has been really influential is that of SK Toombs who has a book called The Meaning of Illness in which she reflects on the phenomenological dimensions of illness, partly drawing on her own experience as a multiple sclerosis patient.

She writes about the experience of alienation that she has so often felt in a doctor's office, and she thinks that, again, like you said, David, this isn't a matter of ill will. When it comes to the doctors, the issue as she describes it, is a difference in their understanding of what illness is. She says that for us, illness represents two very different realities.

For her, the illness is meaningful from the standpoint of her subjective experience, how she goes about her life, and so on and so forth. Whereas for the doctor, the illness is meaningful in the sense of it's etiology, it's symptomatology, it's prognosis, and that kind of difference between the first person and the third person perspectives leads to a significant amount of alienation and even dehumanization in medical context, not because doctors are trying to do that to her, but because especially given the realities of our medical system, they have very little time and bandwidth for getting a fuller picture, and they're at a remove from how she's experiencing her illness itself.

Today we're talking about illness.

[00:08:48] David: What does it mean to be ill?

[00:08:50] Ellie: How does illness reorient us, not only toward our own bodies, but also to our world? As always, for an extended ad-free version of this episode, community discussion and More subscribe to Overthink on Substack.

I wanna start with a very influential work on illness, Susan Sontag's, illness as metaphor. Later in the episode we're gonna get into philosophers who talk about the experience of illness, some of which we've already brought up a moment ago. But Sontag is less interested in what illness is, and even how it's experienced directly and more interested in the meanings that we assign to illness and disease.

She famously argues that illness has often been mythologized and treated as a metaphor, and that this leads to all sorts of dangerous and problematic consequences.

[00:09:45] David: This, I think is a really interesting claim, and maybe we can flesh it out a little more by talking about the two main examples that Sontag gives and those are tuberculosis and cancer. She points out that until very recently, so think here about the advent of cellular pathology and the arrival of microscopes, in the 18 hundreds.

Until then, tuberculosis and cancer were both untreatable and not well understood. This combination of fatality plus mystery led to really intense fears and anxieties on the part of pretty much anyone about these conditions, cancer and tuberculosis were seen as arbitrary death sentences that just like fell from the sky and could attack anybody for no reason and without the possibility of a cure.

This is of course true of many other diseases that were poorly understood at one point or another. It's just that now we experience it in particular with tuberculosis and cancer. But the same could be said, for example, about leprosy, the bubonic plague, and also syphilis.

[00:10:55] Ellie: Even as recently as the 1950s, my own grandmother had tuberculosis and she spent the first two years of my dad and his twin brother's life living in a sanitorium. She had to have one of her lungs cut out and she could only see her children from the window of her sanitorium. I know. So thanks for the intergenerational trauma Grandma.

My dad grew up not being able to see his mother for the first two years of his life 'cause she had like tuberculosis while pregnant. Luckily she survived and she lived a long life with one lung. But I think this disease, yeah, just even in my own life, has had a important kind of metaphorical status as something that really shaped our family life and family history.

The fear that Sontag is describing of these diseases she suggests has important social consequences. It causes patients to be socially shunned and treated as contagious. Even if the disease like cancer or tuberculosis is not actually contagious. So I just mentioned my grandma literally had to be isolated in a ward for two years, couldn't even see her own children other than through a closed off window.

They said that sometimes the window would get opened if they were far away and she would throw Tootsie Roll treats to them.

[00:12:13] David: Oh my God.

[00:12:15] Ellie: I know,

[00:12:15] David: this is bleak.

[00:12:17] Ellie: This is like the essential story that I grew up hearing from my dad. And so I think that also kind of takes us back to something we mentioned earlier about the way that ill people slip down a social ladder that has to do with fear of contagion.

Whether or not the disease is actually contagious. And Sontag also says that ultimately fatal diseases are not just seen as a death sentence, but also as obscene. They're viewed as ill omond, abominable, and repugnant to the senses. There's something that appears as offensive about them. Our deepest fears become associated with disease.

So leprosy, I think is an especially salient example here. It was associated with corruption, decay, pollution, and weakness.

[00:13:04] David: Yeah, and we tend to think that we have this archaic, primal aversion to illness and disease, right? That like there is this evolutionary narrative where we are repulsed by a dying body or an ill body. And once we accept that narrative, or once we accept that mythologized association between illness and corruption, then socially all bets are off according to Sontag because a lot of these. Mystifying narratives that she's talking about, right? Like, the mystification of tuberculosis, the mystification of cancer. What they end up doing is they replace a more empirically grounded understanding of what disease is and what the experience of disease is like. So it's not just that they coexist with a scientific understanding, it's actually that they eclipse a scientific understanding of these conditions, and I think you can really see this in the case of both tuberculosis and cancer, just to stay with these leading examples, even though they were mystified in significantly different ways.

So Sontag points out that tuberculosis was mythologized. As a disease of the spirit basically. So if you had tuberculosis, you had a spiritual problem because tuberculosis was thought to appear in strong contrasts. So its symptoms were kind of like a white palor and also a red flush, and so it was this sense that it's hyperactivity and fatigue at the same time, and that high contrast must point to a problem with the spirit rather than the body. And also because it was associated with the lungs, it had this sense that it's connected to the spirit because of course, the lungs are connected to breathing. Breathing is connected to air, and as we talked about in our episode on air, we associate this element with the spirit, right? The human spirit or the soul.

[00:15:07] Ellie: I always thinking about la bohème when I think about the mythology of tuberculosis, the kind of beautiful dying bohemian woman who's suffering in a cold Garrett with her tuberculosis.

[00:15:22] David: Yeah, but it is spiritualized, right? It's a spiritualized form of suffering.

[00:15:26] Ellie: yeah, and La bohème is an opera as well,

[00:15:28] David: Yeah.

[00:15:28] Ellie: Singing, voice, breath. Okay. Sorry. Go ahead.

[00:15:33] David: No, a good point. But it's very different than what happens with cancer, where cancer is really reduced, quote unquote, to the body. We don't spiritualize cancer like we did tuberculosis. We rather treat cancer as a deformation of the most bodily of all things which are cells, especially with our modern understanding and even more so, we associate it with the most embarrassing parts of the body, right? Like we talk about cancer, of the colon, of the bladder, of the breast, of the prostate, and so here it's really something that. Draws attention to our animal nature, and here what you're seeing is the mythologization because of course, tuberculosis is not just the lungs, and cancer is not just these body parts.

You can get cancer in many other parts of the body as well. But that is the mystification that happens with these conditions, that the meanings and the associations that we weave culturally and historically become more important than facts about the conditions and are seen as more real than the actual, physical, biological reality of the illnesses themselves.

And as a result, we end up with this situation where the diseases and the illnesses are mundane in the sense that they're all around us, but they are not well understood.

[00:16:55] Ellie: Yeah, no. It's like totally absurd the way that we tend to talk about them, and I think cancer is one that for many people, brings up perhaps more connotations than any other disease. Like I hear, my sister has worked for a long time with cancer patients and the big C is something you hear when people talk about cancer.

It's like there's something about that word that has a different status than any other potential illness. It's especially scary.

[00:17:23] David: And there's that series, right? Like the Big C, it's the name of a series about a cancer patient,

[00:17:28] Ellie: oh my God, I didn't even know that.

[00:17:30] David: it's the Unnameable.

[00:17:31] Ellie: and we talk, of course about beating cancer. Like beating illness is a frequent thing that people will say, but I think cancer in particular, there's a sense in which given if we follow Sontag's analysis of cancer as a kind of disease that's more associated with our animal nature.

When we talk about beating cancer, it's usually thought of in terms of our sort of humanity, our medical advances. Sometimes if you live in southern California or you're associated with this sort of like wellness adjacent worlds, people will think about beating cancer in terms of like thinking your way out of it.

You know, imagining your way out of it and so on and so forth. There's a sense in which there's a triumph over the animal nature and you know, it's at this point that. Illnesses turned into a metaphor as a stand-in for those things we fear. And so not only do we metaphorize illnesses, we also use illnesses as metaphors for other things that we find scary or dangerous.

So think about how we describe threats as cancerous or pestilent, which I discovered in researching this episode refers to the Bubonic plague. Another example here is that in his very first political text, Adolf Hitler wrote that Jewish people produced a racial tuberculosis among nations and he often used the metaphor of cancer, and so he's talking about a kind of threat to the body politic of the Aryan pure race in terms of cancer and tuberculosis.

[00:19:04] David: Yeah. It's a thread both to spirit and the flesh. In this case, like the flesh and the spirit of the Aryan Nation.

[00:19:11] Ellie: Yeah, and it's not just Nazis either. I mean, capitalism is very often described as cancerous by critics of it because of its unending growth. I think there's been a sense in which among leftists the idea of capitalism as cancerous because it's just like feeding and feeding and feeding on more and more cells appears very saliently through the metaphor of cancer.

[00:19:32] David: It seems like what we're getting at, it's this way in which the disease sort of disappears. It disappears because of the symbols and mythic images that we use to think them through or to think about them. But then when we do use the term, sometimes we use them metaphorically for other things that are not illnesses, and so they disappear in that direction as well.

And so I think one way of interpreting what Sontag is saying is that we don't have a transparent, direct understanding of these conditions because we don't have a non-metaphorical, non mythologized way of describing them in language. And so it's very much a problem of language interpretation and understanding.

But here we definitely have to ask, well, what then are the consequences of that mythologizing move that we make in relation to illness? And I think that there are two really important consequences that we have to consider. One of those consequences is paternalism. Cancer patients are very frequently lied to.

They sometimes are lied to because people wanna protect them or because they don't want to demoralize them. This happened in my family with my grandmother passing away from cancer. So she had cancer, she beat it, she got it again, the cancer returned and her children made the decision not to tell her when the cancer returned

[00:20:56] Ellie: Oh my gosh.

[00:20:57] David: of paternalistic protection and it led to really tense and very difficult conversations in the family about whether to do this or not. And in particular, it led to a generational split where her children, i.e., my mom and her siblings collectively decided that it would be best not to tell her.

And then the grandchildren, me and my cousins were kind of opposed to that. And I'm not sure that we fully resolved that actually as a family because some of us feel as if she had the right to know.

[00:21:32] Ellie: Okay. This is basically the plot of the movie, the Farewell that came out a few years ago with Akwafina, which I really enjoyed, so

[00:21:38] David: Oh, I haven't seen that.

[00:21:39] Ellie: Yeah. Yeah. It's it pretty much the same plot here, so none of the grandchildren were just like, let's tell Grandma, and you kind of went rogue?

[00:21:46] David: No. Yeah, we did. But we felt like it was not our decision to, step over our parents' authority in relation to their mother.

[00:21:57] Ellie: Well, in order for that to happen, there also has to be a communication between the doctors and your

[00:22:03] David: My generation

[00:22:04] Ellie: Mom and her siblings. No, but not with your grandma, right?

[00:22:08] David: yeah, exactly. And so they were communicating with the doctor and neither my grandma nor my cousins and I were, so there was also a bit of a siloing of the relevant information. And that's what added to the sense that we're not on equal footing for even thinking about this really ethically fraught space.

And so there you really see this danger of mythologizing illness, which is that paternalistic attitude that can very quickly develop. A second danger is victim blaming, and you can easily see what the connection is here, right? When you have a mystified view of a condition, it could be that you read it as quote unquote, purely psychological, and that might lead you to place blame on the patient for being in the state in the first place. And obviously this weakens patient's ability to understand their illness. And to seek proper treatment.

And moreover, it can lead to really low self-esteem because a lot of patients are made to believe that they would be cured if they just had the right attitude or a strong enough willpower, which of course we know is not the case.

[00:23:17] Ellie: it's so tragic to see this still happening in various ways today. In fact, there's been a kind of rise of it with the Maha movement and you know, this idea that your ability to overcome an illness is connected to your character. And I think especially for those of us who, you know, think that Western medicine could do a lot better than it currently does. It can be easy to sort of fall down a rabbit hole of being like, oh, well you do have more control than you might think over your illness. But that's a rabbit hole we have to be extremely careful about not falling down.

And so Sontag's solution to this is perhaps not the most surprising, which is that if illness is mystified, you know, if the metaphorization of it leads to things like victim blaming and paternalism and other sorts of dangers.

Then our job is to demystify it. Historically speaking, mythologies around illness tend to go away when we understand scientifically how to treat those illnesses. And so tuberculosis, once we discover its etiology, no longer appears as some abstract disease of the spirit, but actually as a condition that has certain root causes and which can be treated in X, Y, Z ways.

And so the solution for Sontag is not to keep information from patients, but to stick as closely as possible to the best scientific knowledge of the disease and its treatment. And so we need to liberate ourselves from the metaphors which just obfuscate illnesses, and that will ultimately make sick people sick in a healthier way.

[00:24:53] David: I really like this vision of being sick in a healthier way.

[00:24:58] Ellie: Okay, well good 'cause we're gonna come back to it with Carrel later.

[00:25:01] David: Okay, good. 'cause I do think it's very powerful because there are often two dimensions of illness, right? There is the illness itself, and then do you relate to it in a quote unquote, relatively healthy way or not, depending on how that illness takes on meaning in your life and in the social environment in which you find yourself.

One problem with Sontag's view here where she turns to science as a way of demystifying illness is that it is excessively positivistic. It just puts too much faith in the idea that science will give us a solution to the problems of mythification or mystification.

And I'm not sure that that's quite right on the one hand, because I think science carries out its own mystification, often in connection to illness, we can talk about that. You know, like doctors use all kinds of metaphors also for thinking about illness, like often talking about illness as war, like, you know, like the battle against cancer.

It's not a war, it's something else altogether. So there is mytholigization and metaphorization in science as well. But on the other hand, I think we can also consider the possibility that the scientific account of illness may itself be problematic for other reasons as well. And this is the view of the French historian Georges Canguilhem, who wrote a really influential book in the middle of the 20th century called The Normal and the Pathological and  Canguilhem has been a really important figure in the history of recent French philosophy.

He was Michel Foucault's mentor and supervisor. He directed his doctoral thesis on the history of madness. He also was a mentor to Jacques Derrida. Derrida was his assistant in the early 1960s. And so even though he's not one of the most famous French philosophers, he's sort of like in the background with connections to a lot of people who then went on to give shape to a particular moment of French philosophy.

But in his work, which is primarily about the history of medicine, he tries to show that the scientific understanding of illness that emerged in the 19th century and that has really continued to shape medicine well into the 20th century, is fundamentally misguided.

[00:27:22] Ellie: And fun fact for listeners, David, you wrote your dissertation in part on Canguilhem. I know you've mentioned before that you wrote your dissertation in part on Foucault, but I remember very distinctively this like beautiful lunch we had at the Emory Museum Cafe when we were in grad school where you decided that you were gonna write a dissertation on like French philosophy of science and talk about  Foucault and  Canguilhem and a couple of others.

I have fond memories of that. Needless to say, you have done a lot of work on  Canguilhem. I'm more familiar with his proteges, Foucault, and Derrida, for instance. So for those of us, including myself, who are not familiar with his work, explain to us what the mainstream scientific account of illnesses and why  Canguilhem thinks it's wrong.

[00:28:05] David: Yeah, so the mainstream understanding of illness that he's going after is a quantitative understanding. So famous medical authorities in the 19th century, especially given the fact that at this time statistics was really coming into its own as a very powerful scientific discourse, they adopted this view that there is no difference in kind between normality and pathology.

So if you're healthy, you're in a particular state and if you are sick or ill, you're in a slightly different state, but it's not a difference in kind, it's only a difference in degree where a degree is something that is objectively measurable. So all illness, according to this 19th century consensus can be seen as a problem of either deficiency or excess in connection to a function, a biological, or anatomical or physiological function that if it stayed within the right parameters would be normal.

So just to give a concrete illustration of this, t here is a range in which your heart rate is normal. If it's too slow, then it's ill. If it's too fast, then it's ill as well. Same thing with something like blood sugar. If you have too little of it, you will be ill if you have too much of it, that's also a problem.

Now the question for medical authorities in the 19th century was how do we go about determining exactly where the parameters are? You know, how do you know at what point you have something that is excessive? And at what point do you have something that is deficient? And the answer that the 19th Century generated, again with the aid of statistics was you look at the statistical average, so you canvas a population, you gather a bunch of data, you run the statistics, and that will give you an average that represents normalcy as health. And any deviation from that norm would then be pathological.

[00:30:13] Ellie: And we've talked before about the rise of statistics and the sorts of promises that it offered during this period. And so you mentioned statistics was a young discipline at the time, and it was revolutionizing practically every branch of science with this promise of making everything measurable and quantifiable.

And so statistics was really appealing because it allowed scientists to quantify everything from like your developmental trajectory to your mental state to your affective reaction, and you can see why this statistical approach to medicine would've been appealing because it promised to turn into an objective science what had previously been kind of a squishy art of healing.

[00:30:59] David: And I think we often forget, because statistics is just so woven into our way of thinking about everything, just how revolutionary statistics was, because it really brought within the domain of the scientific things that were previously excluded, right? So there were a lot of things like, let's say like our emotional reactions that people said, you can't do a science of that, it's too subjective. And statistics said, hold my beer. Here is a way of doing it by looking at a large number of people and then sort of like applying mathematical maneuvers to that data, and then you turn it into a scientific object. So it objectified a number of phenomena and it created sciences for them.

It made it possible for new scientific discourses to develop. And also remember that this is in the 19th century, which has often been described as the age of positivism. And so what you get is this consensus in the scientific community that you can use statistics to quantify phenomena. And that if you do that, that gives you kind of like a ticket, you know, straight to scientific stardom.

You can become very famous if you start measuring things that were previously unmeasurable, right? 'cause you're like discovering new things and Canguilhem who is writing about this in the 1940s, that's when this book, the normal and the pathological came out, is really critical of this turn to statistics in medicine in particular.

He says, the first problem with this statistical conception is that it forces us to reduce all pathology to physiology in order for it to be measurable for every illness, there has to be an organic manifestation. You know, like a rise in blood pressure, a change in blood sugar. If you don't have that physiological correlate, then it doesn't exist, and as far as science is concerned, it's not real.

A second problem is that this fetishization of the average as the normal. cuts against the principles of Darwinian evolution, especially the basic fact of biological diversity. Animals that are members of the same species don't have the exact same kind of body.

There's a lot of variation in function, in shape, in size, so on and so forth. In short, organisms are different, and that means that what may be normal for me doesn't need to be normal for you. But that doesn't mean that either of us is automatically ill because we deviate from some norm.

[00:33:31] Ellie: I'm curious mainly about the implication of his view, which is that, does this mean there is no reality to illness. Does that mean that illness should not be interpreted as a deviation from a norm? Because it makes me wonder what illness is if it's not a departure from some ideal state of health.

[00:33:51] David: Great question, and the answer is not quite. So, illness is a departure from a norm, but it's not a departure from a statistical slash mathematical norm that happens at the level of the population. Rather, illness is a deviation from a biological norm that happens at the level of the individual. Every living organism, according to Canguilhem, is a normative creature whose way of being in the world depends on a series of bodily and biological norms that just like make up who we are.

Like, my circulation has to function in a specific way in order for me to be a healthy organism. The same thing can be said about any, like my hormones, my neurons, et cetera. Now what is important about these norms for Canguilhem is that they are both biological rather than mathematical and individual rather than at the level of the population.

And so if I want to figure out if my level of blood sugar is pathological, I don't compare it to the average of all people. I have to compare it to my own previous levels of blood sugar.

[00:35:09] Ellie: Okay, you're starting to sound like a Silicon Valley techie in favor of personalized medicine.

[00:35:17] David: And so he really wants to individualize our understanding of biological normativity, and I think that leads him to this conclusion, which is that in the end, there can be no objective pathology because pathology is always about this subjective individual feeling of being out of joint with oneself and with the world.

And secondarily, he also draws the conclusion that medicine, by definition cannot be a science. It is much closer to an art than it is to a science because it is about taking a lot of scientific knowledge and applying it to a particular individual with particular biological needs and particular biological norms.

And you know, as we know from Aristotle, there can be no science of the individual. Science is always of the general. And so what I'm getting at here in introducing Canguilhem is that there can be critiques of the scientific approach to illness that maybe should make us hesitant about the idea that science is the solution to the mythologization of illness that is so problematic and that I think Susan Sontag is right to be concerned about.

[00:36:39] Ellie: When the philosopher Havi Carel was in her mid thirties, she was diagnosed with an extremely rare disease known as LAM, short for Lymphangioleiomyomatosis. This is a progressive and incurable disease that almost exclusively affects women. Carel experienced severe dizzying and nauseating breathlessness akin to suffocation, and when she first went to the doctor to describe her symptoms, she got a diagnosis of unusual asthma.

Then it became clear over time when she was experiencing very strange and very severe symptoms that something deeper was at work and that she had this extremely rare disease. She describes this in the book that I mentioned earlier called Illness, the Cry of the Flesh, and she talks about how her training and phenomenology, which is the school philosophy that our listeners are hopefully pretty familiar with at this point, given that you and I talk about it a lot, we're both trained in it as well, reveals a problem with the naturalistic view of illness. The naturalistic view of illness is kind of similar to what we talked about with the SK Toombs stuff earlier, the way that tombs was being treated from a sort of third person perspective by her doctors. The naturalistic view of illness is the perspective of the etiology of the diagnosis of the symptomatology from an outsider's perspective.

It's the view of the sciences and a lot of phenomenologists for a very long time outside of the context of illness, have taken issue with the naturalistic or scientific view. Maurice Merlau-Ponty does this a lot in his work, for instance. Carrel says that a phenomenological view of illness, by contrast, is rooted in first person lived experience.

And on this view, illness isn't just something that happens to you, but is an entire way of living, experiencing the world and interacting with other people. So she really identifies the fact that a change in the body is a change in subjectivity itself and the naturalistic view, therefore, it's not that something's wrong with it, it's not that she's like.

Not happy that she got the diagnosis that she got. That was a really life-changing diagnosis, but it has to be supplemented by phenomenology. We have to take into account the fact that illness is lived from the first person, and again, that it involves a complete transformation of your relation to the world rather than just some like localized shift in your understanding of your own body.

[00:39:02] David: Yeah, and I do think phenomenology has been nothing short of revolutionary in the philosophy of medicine because it has put the testimony of the sufferer front and center, and it has made us realize that illness is a subjective condition that need not always map or be explainable in terms of that third person objective, scientific account of reality.

This phenomenological approach to illness I think works really well with the philosophy of George Canguilhem that I just mentioned. One of the first publications that I ever did in grad school was a paper reading Canguilhem, in conjunction with Merleau-Ponty on the question of the phenomenology of illness.

Especially because Conglom himself has this way of centering the first person perspective where he says. You know, you can't understand illness if you don't recognize the fundamental fact that when all is said and done, the doctor patient relationship begins when the patient picks up the phone and calls the doctor.

And that starting point is because the patient feels that something is wrong. And so the starting point of medicine is a subjective awakening into the experience of pathology. Everything else is downstream from there. This means that illness really isn't, again, as those 19th century medical authorities would want us to believe an intensification or a weakening of normal parameters, normal functions, normal faculties.

It is a brand new mode of experience for the person who is undergoing it. So even if you're dealing with a very low level condition, like having a cold, it's not as if it's just like your throat or your nose that is sick, or it's not just that your temperature is higher than average. It's rather that you are in bed unable to do the things that you want, which means that the polarity of your existence has been fundamentally altered.

[00:41:10] Ellie: Yeah. Carel actually begins her book by talking about, first realizing that something was. Wrong when she was in an exercise class and noticing that she couldn't do the basic weight training that she was used to doing, and starting to compare herself with other young slim women in the class and being like, I usually can do what they do, what's going on?

And so she has some interesting reflections about her own ablest biases. And feeling alienated from her body because she wasn't able to do what she was used to doing. And so she talks at length about how illness distances us from our biological body and. The body suddenly seems as though it's betraying us.

The lived experience of the body becomes painful, unstable, and treacherous. This isn't normally available to us while we're healthy, and so even though she had no idea what was going on at first, this sense of alienation, which began in the simple daily ritual of going to an exercise class and suddenly realizing that her abilities were different than usual, I think speaks to what you're talking about with Canguilhem.

[00:42:15] David: You mentioned that she felt as if her body was betraying her, and I think that this sense of the body as a betrayal is really fundamental because. We are our body, right? So it's not as if when you feel betrayed by your body, you can turn to something else as a safety net. There is nothing else, right?

Unless we are willing to pause at a dualist metaphysics where there is also a spirit. But if we are betrayed by the body, we lose our faith, not just in the body, but in the world, in existence, which is made possible by our very embodiment. So it just like goes to the very core of who we are as fleshy, embodied creatures.

[00:42:53] Ellie: In addition to this new relationship with the world, which is definitely core to what Carel is talking about here, I also want to really stick with the different relationship to the self that emerges here. Because what happens when she's in that exercise class is first her relationship with the world changes.

She's not able to interact with it in the way that she usually does to pick up the weights to, you know, cycle in place, et cetera, to the same degree that she usually does. And then that leads her back to herself to asking what has changed with me. She talks about how she went through various interpretations of what might be happening to her, including one that was given to her by doctors, this initial diagnosis of unusual asthma and this question of self interpretation and the self-doubt that you experienced, in fact, a lot of her recent work has focused on bodily self-doubt and what she calls radical bodily self-doubt, makes you crave a diagnosis, and so having a name for the diagnosis can be a huge relief. But at the same time, there then becomes a kind of relationship with a diagnosis that can also alienate you from yourself in different ways.

And she talks about a number of stages that she went through post-diagnosis, especially because her diagnosis was so serious, this rare and terminal illness. And she talks about one of the stages being, developing emotional self-discipline and actually realizing, Hey, I'm kind of stuck with this. I feel horrible for myself.

This feels like an unjust situation. Like, I don't deserve this. But then also realizing, okay, at a certain point I sort of have to pick up and keep going on this bodily self alienation is a new reality for me. And a form of reconnecting to self was actually the development of emotional self-discipline.

[00:44:44] David: This is hitting home very close to me at the moment because as I mentioned to you, Ellie, before we began the recording, I have an epidural scheduled for tomorrow because of a chronic lower back problem. And, you know, there's a lot to be said about whether that's a disease or an illness or just like a condition, but it has been a debilitating condition that I've been dealing with for a couple of years now.

That now only gets fixed whenever I have epidurals. And it has completely changed my relationship to myself in the sense that things that previously I could do just by default, like play sports without worrying. Now I can't quite do it the same way, and so I am mourning the loss of a certain kind of self that I've been up until this point.

And at the same time, I am experiencing intense anxiety about the imminent closing of doors that I thought would be open for a long time. You know, I play volleyball competitively. I travel for tournaments. I've had this identity as a volleyball player for a very long time, and now I see the writing on the wall.

Do I have three years? Do I have eight years left? I don't know, but suddenly I know that I have very little left relative to what I would've thought before this condition. It has forced me to ask myself a question that, although I wish I didn't have to ask myself, has been fruitful, which is who will I be under this new reality? So yes, my possibilities are shrinking, but I still have to make a decision about how to act under this new reality.

[00:46:21] Ellie: Yeah. And I'm glad you bring this up because even though some aspects of Carel's analysis are specific to very serious and chronic illness, there are other aspects of her analysis that are applicable even to something like a cold, and then certainly to, I don't wanna say that you're not experiencing, like you, like you mentioned, your condition is chronic, but obviously as we also said, less severe Yeah. Than a terminal illness. But I don't think, like she's super interested in saying, like, in policing the boundaries of how serious something needs to be in order to count as worthy of her kind of phenomenological analysis. And so I think your point that there is an alteration in your relationship to world and to self is well taken here.

I wanna say something now about how the relationships to others change, and I do think this might be a case where there is some specificity to a kind of condition like LAM, and that is the fact that Carel talks about how her relationship with friends changed a lot, once she received this diagnosis because her friends really didn't know how to talk about it with her.

They did not know how to relate to this diagnosis. And she's based in Britain. And as I was reading this, I was like, is this partly a British thing because she actually talked about how a lot of her friends never even addressed the diagnosis at all with her, which seemed very strange to me. And I know British people have like a reputation for being a bit more buttoned up than Americans.

But whether or not there's a bit of a cultural difference, there's still a lot in what she's saying that I think is transferable to many different contexts. For one, she talks about how her interactions with other people including, and perhaps even especially when they didn't explicitly address the illness, took place in the shadow of the illness, right?

It becomes a kind of elephant in the room and you suddenly feel like in order to mitigate that and the awkwardness that it wreaks on social interactions, you have to be careful to be a good sick person, not polluting others or making them uncomfortable. This is especially hard for Carel, given that her condition meant, at least at the time that she had to wear an oxygen cylinder and walking even a tiny, slight incline, was extremely challenging.

And so when we're talking about the change in relationship to world, one of the things she talks about is that suddenly, if she was walking from point A to point B, even if it was just a couple of minutes walk, she had to research how steep the incline was. Because even a slight incline was extremely challenging, if not impossible for her.

So walking around with an oxygen cylinder, having to pause at various junctures made her feel like she was sort of weak and a problem for other people, and so then she has to be really careful to be a good sick person. It ultimately also meant that there were a lot of social situations in which she didn't want to enter because she was just like, I don't know if I'm really comfortable meeting new people, how are they gonna relate to this illness? And so it just creates this kind of new self that you feel really alienated from, but that you still have to kind of manage. And that is this sick self that other people are perceiving in ways that completely exceed your own self-management.

[00:49:28] David: Yeah, and this I think, is directly connected to what earlier I called social scripts as not having the right things to say specifically, right? Like not knowing how to broach a topic, not knowing what questions that are appropriate, and not knowing when to ask those questions. And in the case of an illness like this one, right, where there's like a visible component, like with the tank for example, I do think it leads to a very tense feeling of tiptoeing around those people that previously you saw as your closely knit social network. Like these are the people that you wanna feel comfortable around, that suddenly you are hesitant about in that sense of hesitancy, social hesitancy can really destabilize your sense of your social reality.

More importantly, I would also add, it sometimes translates into placing an unfair burden on the sick person themselves. You phrased it as like being a good sick person, but I think a different description is that the responsibility suddenly falls on them to make other people comfortable around the visible markers of their illness.

And so, for instance, this reminds me of all the standup comedians who either have a visible disability or who have an illness of sorts that is part of their routine. Always begin by addressing it and providing comic relief so that the audience feels comfortable in its presence. And I feel like a lot of people with these serious chronic illnesses are put in that position of having to provide relief to others for a condition that they have.

[00:51:14] Ellie: And this pressure to manage others' impressions of you, which is especially cruel given that there is no possible full management of that impression given the metaphorization of illness and how deep that runs in our society is certainly a massive burden that we place on people who are ill when they're already dealing with many other features of their illness.

And although we're not gonna like wrap this up into a perfect neatly tied bow, I also wanna mention a really interesting aspect of Carel's analysis, which is the idea of health within illness. She somehow manages to pack so much into this very short book illness. It's just like a little bit over a hundred pages.

And so she talks about the fact that we often, of course create a dichotomy between health and illness and you know, from a sort of definitional perspective that makes sense. But she says, for those of us who have chronic illnesses, we really need to find a way of embracing health within illness, of articulating that for ourselves, of achieving that for ourselves as far as we are able.

Which you know, may also involve working for social conditions that support that for people with illness in general. But for her at least, the possibility of health with an illness started in a pretty dark realization, and that was the realization that because her illness is terminal, I will never get better.

Her first lesson then was just to give up and she realized once she gave up, that even people who are well make excuses for not really enjoying their lives. We so often say, you know, I would enjoy my life if X, Y, Z conditions are different. And it's especially easy, of course, and natural to do that when you have such a life changing diagnosis.

But she says once she realized, Hey, I'm never gonna get better and I just need to give up it changed her perspective on even the life that she had led when she was well, which was that she was constantly finding excuses not to really enjoy her life and the term health within illness. I should just clarify, it's not a term that she initially coined.

It's coined in the 1990s, and it trades on the fact that there is a lack of correlation between objective health and subjective wellbeing. And so a lot of people would assume that if you are unhealthy, considered from a quote unquote objective perspective, maybe Canguilhem has questions here, that you would then also have a loss or lack of subjective wellbeing, but that's actually not the case.

And she identifies a number of positive mechanisms that enable health within illness. She says one is adaptability and another is creativity, and so actually having to cope with her illness, being adaptable, being creative, also developing self-discipline, and not giving into self pity, as I mentioned earlier, have empowered her not to suddenly overcome the alienation that's produced by such an illness, but rather to find a health within illness, for instance, to embrace that there are good days and bad days to be adaptable to those changing conditions.

[00:54:15] David: This coheres, I think really well with a lot of illness, autobiographical writing, where people reflect on how yes, for all the badness that comes with illness, illness can have this transformative effect as well of either helping you clarify to yourself what your values are, or shift your priorities in a way that they better align with the kind of life that you want to have.

And of course, illness can, as I said earlier, it can close doors for you, but it can also lead to new ways of inhabiting self and world, right? Like, and maybe it opens even some doors that you didn't think were. Even a possibility previous to the moment of illness, and I, I wanna connect this back to Canguilhem one final time because Canguilhem also writing about illness, talks about the importance of getting to a place, not so much where you aren't ill or pathological because he recognizes that that's an inevitable feature of the human condition.

He wants to define health also in a new way, that maybe we can put in dialogue with this notion of health with an illness. And he says What we should be striving for is not for the restoration of our normative way of being prior to illness. It's not about going back to an idealized state before catastrophe struck.

What we should be striving for is always a state in which the organism can, as he says, institute new norms. Where you can, and this connects to the adaptability and the creativity point. If you're able to still institute new norms, those can be biological norms, but they can also be social norms, just new ways of living your life on your terms, even if those terms are no longer the same as before, you can inhabit a sense of normality that is specific to you as a biological organism.

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[00:56:45] Ellie: We'd like to thank our audio editor, Aaron Morgan, our production assistants, Bayarmaa Bat-Erdene and Kristen Taylor, and Samuel PK Smith for the original music. And to our listeners, thanks so much for overthinking with us.