Susan Burton: Whose Pain Counts?
You may recognize Susan Burton’s voice from the incredible New York Times and Serial podcast, The Retrievals, which explores the experience of women who underwent egg retrieval at the Yale Fertility Center with saline in lieu of fentanyl—because a nurse named Donna was replacing the drugs in service of her addiction. The series is a beautiful exploration of whose pain matters, and the type of medical gaslighting that’s far too common in the lives of women. Susan is a veteran staff member at “This American Life,” and the author of the stunning memoir, Empty, which explores her own uneasy relationship with her body. Though she’s in recovery now—a description she holds lightly—Susan spent the first few decades of her life struggling with binge eating disorder. We explore all of this in our conversation, which I’ll take you to now.
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TRANSCRIPT:
(Edited slightly for clarity.)
ELISE LOEHNEN: Congratulations, it is so exhilarating. It has been amazing to see the retrievals just sitting on the top of those charts.
SUSAN BURTON: Oh, well, thank you. I mean, it's been amazing for me, too. I never would have expected that a podcast about women's pain would be in the top spot for weeks in a row. Yeah.
ELISE: But this is the whole point in some ways, right? Is that these stories about women and our bodies, there's this idea that it doesn't matter and no one cares and au contraire, au contraire. You know?
SUSAN: Right. Exactly. Well, all of us who have been women and had these experiences with our bodies, right? Maybe we all could have predicted that listeners would respond to it. Yeah, for sure.
ELISE: yeah, it was one of those shows and I'm sure that anyone listening to this podcast most likely has already listened to the series or has heard about it most likely from a friend and the pings were all the same, which was: this is speaking into existence, something that we've all felt, and yet it's rare to hear these things clearly articulated when so much of our culture is about instead sort of the facts of the case, right? Like the Theranos shock /horror of culpability and criminality rather than the quiet, very quiet story of the people who are actually affected. So, for all of us, will you just tell us the story about how this even came to you?
SUSAN: Sure. Okay. So the so the retrievals, the podcast, I first learned about the events at the center of it, one night in November, 2021, it was a Friday night. I was home from work. It was late. I was on the couch. I was scrolling through my phone. And in like the discover feature in the Chrome app, in my list of suggested stories, there was a local news story from a Connecticut outlet, I actually can't remember if it was a TV outlet or a newspaper, but like, you know, the New Haven Register or something like that. There was a story that said that these seven women had just filed a lawsuit against Yale University because of this thing that had happened to them at the fertility clinic affiliated with Yale. At that clinic, a nurse had been stealing fentanyl and replacing it with saline and the reason it affected these women is the fentanyl was used as pain medication during a procedure they had there, the egg retrieval procedure which is a pretty standard part of IVF. I mean, an essential part of IVF.
So, immediately I just wanted to know what happened and how it felt for everyone involved. I mean, it just grabbed me immediately. I was drawn to a number of the themes, to women's pain, to addiction, to infertility, to the longing to be a mother, Yale where I went to college, so I had a sense of the landscape and by the next morning I had already, you know, downloaded every legal document available about the nurse's criminal case and had already contacted the lawyer representing the patients to find out more.
ELISE: Yeah, I mean, it's a quiet case, right, ultimately? And again, like there are no teasers in our conversation because the podcast itself, it's not a true crime podcast, right? It's about the untold story of the women and and sort of the lack of ownership, the lack of institutional ownership and what often happens, I think, in any medical establishment, which is like an absolute refusal to say, we're so sorry, right? It's a typical response, I don't know, what do you think that is? Is it a fear of legal ownership, or why do you think that there's so much gaslighting, or just a lack of acknowledgment of I don't even want to say a bad outcome, but what was that?
SUSAN: So, yeah, I mean, one of the background clinic sources I spoke to said to me, you know, I think Yale thinks we need to cover our asses and we can't apologize and I think that there's no, like, law written out that says if you apologize, you are liable for this thing that happened to patients in your medical facility. That's not exactly how it's written, but because nobody From Yale as an institution spoke to me, I can't say exactly what the rationale was. I should say the patients were sent a letter by the clinic. So what happened was for months, these patients at the clinic were experiencing a lot of pain during this egg retrieval because they were supposed to be getting fentanyl, and sometimes they weren't getting fentanyl, they were getting saline instead. And nobody knew what was going on except for this nurse. Eventually, it was discovered, and the patients who were identified as possible victims received a letter from Yale. And that letter does contain, now I can't remember the exact words, but there is A what I would characterize as a mild apology.
But there was also a lot of language in that letter that that could be interpreted to use the word you just did as gaslighting. For example, there's a sentence in the letter, and I'm probably not going to get it exactly right, but there's some sentence like, you know, we use a, at the Yale Fertility Center, we use a variety of medications. And in this way, we can ensure that patients are comfortable, even if one medication is missing. And, you know, I spoke to one patient who was just like, well, that does not characterize my experience. Right. Because, of course, the point was these patients were not comfortable. They were in excruciating pain.
And then, you know, you made such a good point earlier that I wanted to touch on really quickly, which is that yeah, as far as true crime, like, I didn't totally understand that this was a true crime podcast until I opened up, you know, Apple podcasts the morning the, you know, either the trailer was released or the first episode was released and saw it: true crime. And of course, that makes sense, right? It makes sense. But I always really saw it as an emotional investigation. So, the quietness that you've identified that was really what was driving me.
ELISE: It's interesting, true crime is like container for our shadow, sort of like the way that we experience or allow ourselves to experience all of those darker emotions in a way that feels safe and outside of us. But that's a conversation for another day. I mean, going back to my dad's a physician and a lung doctor and an intensivist and he was present, you know, in the emergency if someone was in a car accident and my dad was on call, most likely he was there at two in the morning and he was present for a lot of trauma, like acute physical trauma. And he did a lot of ongoing, you know, he was a primary care doctor for a lot of aging adults. And somehow he's not a surgeon, but he had to do various procedures and he was never sued. And I think part of it is that he's a great doctor, certainly, but that he pushed against this idea that you couldn't be present and you couldn't be sorry for an outcome, even if it wasn't the outcome that you wanted, even if things might have gone differently. And he would say that he always pushed himself to be present within those deeply uncomfortable and painful moments with families when it was so much easier, and again, I think a lot of doctors understandably rely on this sort of, well, you shouldn't apologize. It could make you liable instead of just, you know, sucking it up and being willing to go and be present with people in pain and say, I'm so sorry, this is not the outcome that I know you wanted or that I wanted. And that that he thinks alone, and my mom, who's a nurse and ran my dad's practice. So it was like paying all of this practice insurance, like it's these are high stakes conversations for doctors, certainly and in the health care system, and she had an an aneurysm when I was in high school. And my parents flew to Arizona to see sort of the best. Surgeon in the world. It was behind her eye. And this doctor saved her life. You know, she was in an induced coma. It was very scary. And the team left a piece of gauze in her head. And so she ended up having to have another brain surgery down the line, this like recurrent double vision, clear malpractice.
And what was so interesting about it is that ultimately my mom, even though it was like theoretically felt like traitorous, my mom ended up suing the practice and remodeling her kitchen. And she did so because he would not apologize. There was never any acknowledgement from the doctor of, and she was like, you saved my life. My gratitude is endless. And this happened and they wouldn't acknowledge and she was like, okay, the fact that you can't just, all I wanted was an acknowledgement. And so now I'm going to have to sue you.
SUSAN: Well, you know, I mean, first of all, my God, I'm so sorry that happened to your mother. I'm so glad that she's okay. That's terrifying. And you know, the research shows that patients are less likely to sue when there's an apology and transparency. And the story you just told, like, like, bears that out. I mean, I do want to say that the clinic sources I spoke to, you know, across the board, those who were still at the clinic when this was all uncovered, they did try to apologize individually to patients as best they could, and they wished, you know, that their institution, they wished that Yale would step up and Take ownership and accountability and, like, offer transparency and offer an apology, but I think it can be really hard to have those conversations and it sounds like your father was really attentive to the importance of that.
ELISE: Yeah, I mean, and so switching back to these women and their pain and the all of the research that suggests that women, particularly women of color, people of color, right, are under medicated for pain, under assessed. What is that? What do you tie that to?
SUSAN: I mean, I think, you know, for women, there are long historical and cultural, the precedence for seeing women patients as hysterical, as unreliable narrators of their own symptoms. You know, I think that there's recent research, right, about there was a study from UVA that came out several years ago that showed that even medical students rated the pain ne of a black patient as, maybe not rated the pain of a black patient as less, but it documented these like really disturbing beliefs that the medical students held about black patients, for instance, that skin was thicker, so the nerve endings weren't as sensitive and these are medical students, right? So there's all kinds of really entrenched gender and racial bias in the interpretation of pain in our healthcare system.
ELISE: Yeah, and I would also say that for women, there is, particularly when it comes to our reproductive organs, and I want to talk about even the language of IVF harvesting, the way that our bodies are sort of depicted as these vessels, right to be, harvested inherently is so strange. I don't know what words are better, but that feels awful to hear, but that there's this already this natural split amongst women or the way that we sort of rate each other's experiences. In the birthing room as like, did you do it quote unquote naturally? I guess, you know, to have an epidural is not quote unquote natural, but the way that we've already created, I don't know, labels to divide women amongst those who are quote unquote having natural childbirth and can take the pain. I don't know the way that we valorize that.
SUSAN: Oh, yeah. Oh, yeah. No, I think it's, I think the valorization of pain, especially around childbirth is so fascinating. I mean, the thing with the uterus, right? So that's where like the word hysteria comes from, like the uterus is, you know, derived from when you get a hysterectomy and the whole thing since antiquity, like the idea that the uterus, like if it didn't have a baby in it roved around...
ELISE: wandering
SUSAN: right? The wandering womb, and that's what made women sick and crazy. And it's just nuts, right? But you see this played out today in all the ways that we talk about women being emotional and hormonal and it's all to do with, you know, wanting to have children or pregnancy or childbirth. I know it's so, you know, I have I have two children and I birthed them a while ago, one of them just started college and the other one is about to be a sophomore in high school, but with one birth, I had an epidural and the other one was unmedicated. And that was the word I landed on. I was like, okay, I don't want to use this word natural, for all the kind of reasons you named, it seems like there's like a hierarchy of kinds of birth and I'm not going to fall into that, but I don't know if unmedicated is really any better, you know, but I remember not feeling like I had the right word and my reasons for wanting to do it that way, I'm somebody who has had a lot of fear historically in medical settings, and I was more scared of the anesthesia than I was of the pain. I was scared, you know, that the epidural would be placed wrong. I was scared I would have the epidural headache. Like, those fears were so enormous. And I always felt like I was you know, some strange, anxious outlier, but in reporting this story, I did a lot of research about egg retrievals and you know, because the patients in this story went through these retrievals without getting pain medication, and Yale told them like, your outcomes weren't affected by this and the patients that, I spoke to were just like, first of all, that's just like such an insensitive statement, but also could that really be scientifically true? And so I went looking for research about having egg retrievals without pain medication. Unsurprisingly, there's very little research about this because it's not like a typical category of research. Like, let's do a really painful, procedure on patients and not give them meds. But the couple studies that existed, were mostly about patients who were more anxious about the anesthesia than about the pain. So that doesn't exactly fall into the category of like, oh, you know, valorizing pain, it's, you know, tougher and more noble to do it without. But I think that what does happen is when one does feel pain, then you start to question yourself. Like, oh, am I just weak? Can I not handle this? And that's what happened to a lot of patients in the story, is they blamed themselves for something that was absolutely not their fault.
ELISE: I had two medicated births, both induced, so pitocin and epidural. And I also had the experience with my first of, and I loved the epidural. I hadn't slept. I mean, I had slept, obviously, but I was so, uncomfortable. I was physically so huge. I have a very, I'd call it inflammatory response to pregnancy where I gained like 60 plus pounds regardless of what I do. And I hadn't really been sleeping at all. And I got the epidural and took a nap. And then my epidural failed or didn't keep up with my labor. I think my labor was very slow and then it got going. And I mean, I would count myself as having a high pain tolerance and I know pitocin makes everything a little bit more extreme. I don't think you can have pitocin without an epidural, but Oh my god, if there had been a knife, I would have cut my child out of me. My husband was crying It was during a nursing shift change. And so there was no one, finally someone came in to be like what's happening?
SUSAN: Oh my god.
ELISE: What is happening? I mean I sounded Like a wild animal. Yeah, my husband was crying. I guess he probably should have gone on the floor. He didn't want to leave me. Anyway, it all worked out. It all worked out, but that one hour without that epidural before they could, you know, find the anesthesiologist and get me back on track was unlike any, I mean, it was, I wouldn't wish it on my worst enemy.
SUSAN: Oh my god.
ELISE: so Wild.
SUSAN: Oh my God, it must have been awful. I mean, with my first, you know, my water had broken. I had been more than 24 hours, and the doctor was like, I'm going to give you Pitocin and I will not give Pitocin without an Epidural because it's cruel. Like, it just sounds like the most horrendous pain. I mean, I had the same reaction to the Epidural as you. I was just like, Oh my God, I can rest.
ELISE: I mean, I didn't know it was fentanyl until after. But yes, it was. Like, bliss, I mean, which I know is a scary thing to say, but I just was like, this is the best feeling I've had in nine months, like, thank you for this reprieve and rest.
SUSAN: Yeah. Yeah, I know. It was such a good lesson to me. As far as just, you know, as somebody with my history of somebody who'd been so fearful, just like, Oh my God, this, like, this is the benefit of treating pain. I think I was probably able to have a vaginal birth because of the, you know, because of the epidural. I think I was so tense. My God, that hour though, when you were just like raw with Pitocin
ELISE: It was a mess. A nurse was like walking by and she, you know, she was like, what? What's happening? I mean, it was just like chaos. Like she had just gotten there. She was like, I got to find my shoes. Let me call your doctor. You know, just like, whoa, because I had just been plodding along and then, they looked and they were like, Oh my God, don't push. It got really crazy really fast and fortunately, everything worked out. And I think too, with like, with things like childbirth, you can say, Oh, it's pretty simple, stupid, like we've been doing it for, you know, ever. And this happens to women every day, routinely. And also, it is incredibly dangerous. And I just want to also say, Having grown up in a medical family where I would, you know, type to my dad's transcription. I spent, you know, every day after school in my dad's office filing charts, etc. And I would go across the street with him. I would hang out in the nurse's station. I would watch procedures as a child, which is so odd, but endoscopies, colonoscopies, you imagine now someone saying, like, do you mind if this like 12 year old watches us give you a colonoscopy?
SUSAN: this is like from another time, this is from like our parents generation or something that you were yeah, you were like across the street and then you were going in, I can't believe this.
ELISE: It is from a different time, different rules back then, but I, you know, love hospital. Also what was so painful, and I've, for the most part, had incredible experiences with my physicians. And then to hear the way that that trust can become broken. And then also what happened clearly to so many of these women, understandably, is that you have to presume, and I think that this is very common in America, it's part of the rise of wellness culture and it's one of our sort of health care laments, is the hypervigilance required on the part of patients who either go through an experience like this or feel like nobody's listening when they're explaining what's happening to them and Therefore it's on them. These things that should really not be any of our concerns, right? The whole point of going into a hospital to give birth is handing over your life and the life of your child to your health care team so that they can ensure Your safety and then to feel like that's broken, that you're the one who needs to be in charge is such a trespass. Like the assumption of hypervigilance is so wrong. Like it's so unhealing, right?
SUSAN: Yeah, no, unhealing. You're right. That's a good word to use. I mean, you know, I think like a couple things I want to respond to. So, one, you know, I've heard from from multiple, you know, doctors, doctor listeners, who've who've talked about that sense that that is what is so painful for them about listening to the story is how these patients lost trust in this system, you know, and that feels hurtful. And again, I'm not, you know, even talking specifically about people from Yale, but just doctors in general. And then, you know, I think One of the things when I was researching the story and reading a lot about, you know, women's pain and the dismissal of women's pain in medical settings, I kept coming across these articles that would be like, you know, 10 tips, how to advocate for yourself with your doctor, you know, what to do if your doctor is not listening. And that kind of advice is obviously valuable and important, but it was just really striking that so much of the time the onus was on the patient to be in charge of this problem and seems to me to be where solutions like different training in medical school to facilitate these conversations, to underline the importance of listening, to teach how to listen, and again, not that, like, those things aren't happening at some level, but there's some kind of process of disconnect, for sure. And then just even the idea, you know, talking about going into the hospital for a birth and thinking about why are there so many doulas in hospitals now, right? Because it's like, you need another person to, to advocate for you. There are, again, there are lots of other reasons to hire a doula, but one of them is to have an advocate for you at that really vulnerable time.
ELISE: Yeah. No, I mean, and it's also why I insisted that my parents come to Los Angeles. I mean, I think that they kind of wanted to anyway but my husband's amazing, he's very sweet, but he is not the sort of person who goes to get aggressive with anyone. Not that that's what I wanted necessarily, but you want, you can't be the person. You can't be the person. And it was interesting just thinking about, in the process of going back through my experience, like, my desire to be a quote unquote good patient, and then the other feedback that you'll get from women, such as, like, if you want an epidural, make sure you ask very early because other people will, unless you're So be prepared to get strident and quote unquote crazy because other women will come in and their craziness, these are, I just remember hearing these words, their craziness will outweigh yours if you're not willing to get nuts and so they will quiet women down according to sort of the volume level and so be prepared to be bumped. So ask early because it will invariably take much longer. I remember getting that, which I, on some level I understand, but it's all so messed up, Susan. Like it's just so gendered, really.
SUSAN: It's so gendered. It's so messed up. And it's so messed up that you have to like jump the epidural, like you have to, everybody will get crazy. So the only way to like get the epidural...
ELISE: who are really screaming will outrank you, you know?
SUSAN: But one of the things you know, that was so interesting to me in this story was that so even though there's this like weirdness around like, you know, the crazy ones will get it. There's still this culture of like you're going to go into that hospital and you are going to ask for what you need for your birth. But infertility treatment, it's really different. You're really dependent on, you know, many clinics is a nurse team. You're really dependent on your providers to guide you like daily in each step of these really complicated treatments. Like there's no book you can buy. There's no way to do it yourself. There's no DIY version of this. And that, you know, kind of submission makes, makes patients even more vulnerable than they already are in this really physically and emotionally demanding process.
ELISE: About the experience of so many, in that gaslighting, in that sort of like, this can't be normal, this level of pain and also this like, oh my God, I'm somehow immune to fentanyl. Right? Which is what they were told. Like, they'd been given the maximum dose and therefore, like, fentanyl, quote unquote, like, didn't work on them. I don't know if that's an actual medical reality, but that seems somehow implausible.
SUSAN: So some of the patients who you know, they were, they went into this procedure, they assumed they would get fentanyl, they came out of the procedure, some of them had felt everything during the procedure, some of them were more sedated and didn't feel pain until they came to in the recovery room, but so immediately, they started coming up with, like, Theories and stories about why this had happened to them and a number of them were like, Oh, I must not be sensitive to fentanyl. It's not possible to be, you know, immune to fentanyl. People can have you know, varying levels of sensitivities to different opioids. But being immune to fentanyl is like not a thing.
ELISE: Yeah. No. I mean, that seems impossible to fathom. The other part of the story, and I think that every woman who has a child can very much relate to this, was the conversation sort of about the outcomes and the, well, you had a baby and some of the women didn't and it wasn't successful for them. For some it was, for some they had, I think you used the word spontaneous pregnancy, so outside of the fertility clinic, they just managed to happen to get pregnant. But there's this like, well, you got the baby, you had the baby, you achieved the result. So what does it matter? Right? And then you talk about, I can't remember your exact words, but you're talking about actually seeing one of the babies and the design of babies and the way that they automatically pull attention. Because one of the things that was so shocking. And sad to me, which is such a right, I think, of matrescence, like such a right of becoming a mother, is that you spend 10 months seeing your doctor with increasing regularity, everyone's concerned about you, and then suddenly you have a baby and you are just a vessel and no one cares. And you go and get your six week checkup. They don't really even take blood work or make sure that you're replenish in any way, and then you're done, and the baby is seeing the doctor with abundance and a tremendous amount of attention, and you are just the carrier.
SUSAN: Yeah, I mean, that, that drop off that cliff when you have a child is, it's pretty huge. I mean, the patients in the story, the first one, you hear her tape in the story, her name is Isha. And, she said to me she told me an anecdote about going to her OB for the six week postpartum followup and she mentioned that she was part of this lawsuit against Yale and the obstetrician was like, well, what's the big deal? You got pregnant. And in the tape, you can just hear me reacting, I was just stunned, right? That that would be a response, like as if the only outcome that mattered was the birth, was the baby. And, you know, in fact, that is how the success of a fertility treatment is measured. That's, you know, the success has to be measured some way. And in a way, in some level, makes sense, I suppose. But just the fact that, you know, the only part of a story that matters is the end, is kind of erasing everything that came before it. And so, I felt sort of, you know, empathic fury but then in the course of doing the interviews, I eventually met one of the patient's babies, and it really complicated the feelings I was having, it was a really important experience to remember, like, you Oh, my God, like the baby matters, right? Like I've been having all these feelings, like, why are they telling the women that the baby is the only thing that matters? But the baby does matter deeply. But all the other things matter, too. Yeah.
ELISE: Well, there's no similar conversation where the needs of the son displace the needs of the father. It's just not part of our cultural conversation in any way, you know, like it's such a strange conversation and yet somehow it's not strange in the context of women. There is this, and in some ways it makes sense, of course, because we do theoretically host and carry children and birth the next generation and the way the medical conversation, you know, the harvesting of our eggs, the use of our bodies is, I mean, it's all very strange. It's very parasite host. It's not like, wow, your body is this incredible, creative, alchemizing, magical, godlike instrument, right? Instead, it's this like, it's very, I don't want to say, like, medical isn't the right word. It's just very displaced. It's like, this has nothing to do with you in so many ways, right? The way that we medicalize it, or take away all of its magic.
SUSAN: Well, just even, when you're talking about what happens after pregnancy. It's almost like it's barely an epilogue like I remember. So again, right? This is a while ago. My son just went to college. So this is more than 18 years ago, but like I remember my copy of what to expect when you're expecting and like you get to the end of that book and there's like little bits about maternity leave. But then the next book you go to is like your baby's development. You know what I mean? But there's like lots of stuff that I mean, the stage after pregnancy, right? I mean, there are so many women who struggle with PPD. I had an awful tear after the birth of my first child and tears like weren't anywhere in the literature I'd read, you know, I couldn't stand up. I couldn't sit down. It hurt to nurse. I thought I was going to have this pain forever. It was excruciating. It was so bad, but there was nothing telling me about it, you know, until that six week appointment with the obstetrician, it wasn't addressed until then. Yeah, it's interesting. I'm in a place right now, so I'm about to turn 50. And I'm very, you know, aware of my fertility in a different way, right? Not that I wanted to have more children, but I'm very aware of like, oh, I am moving out of this fertile stage. And that's, you know, that's its whole own thing. Right?
ELISE: Its a whole own thing. And it's interesting, the whole question about perimenopause and menopause and in so many ways, it's exciting that suddenly, We're having a lot more collective conversations about it. And then at the same time, to watch it become commoditized and commercialized and pathologized, medicalized, like those are important conversations certainly about, you know, HRT and estrogen and yes, like let's have those conversations openly and publicly, And more research, etc. And yet at the same time, it again, always brings it back to the body and the function of the body of women outside of what it is to actually be a woman. And I mean, I guess I would call it, in the conversation about perimenopause, menopause, matrescence, like, there is such a spiritual, regardless of your beliefs, even if you have none, there is such a spiritual, historical, certainly cultural conversation that we're also just not really having about these massive life changes. And instead it always comes back to the body and like what's happening to the body. And like, let's talk about our hormones and it's excruciating. And I also, I want to turn here and talk about you and your body because having read your completely stunning memoir, I don't know how I missed, maybe did this come out in COVID?
SUSAN: Was totally COVID. June 2020. Yeah. Yeah, totally. No, it's okay. I'm thrilled that you read it. Thank you. Yeah.
ELISE: So your memoir is stunning. And I think for anyone too, in the same way that the retrievals might be codified as a true crime podcast, but it's not about crime at all, your memoir is not about plot. It's not like, look at this crazy life. Look at all of these things that happened to me, although certainly things happened to you. Instead, it is such a like, gorgeously written exposition of your relationship to your body and binge eating disorder. I mean, for anyone who loves memoir, it's beautiful. And then it's such a, I feel like necessary read. It was so helpful for me to even understand this sort of the, the compulsive and, and or addictive part eating disorders. It's not really discussed, right? Like, I don't think that people even understand. That it is, in of itself, it's not bulimia, and it, again, lives on that spectrum of permitting and restricting, the spectrum I think every woman embodies, even if we don't go to the extremes. Obviously that must, in some way, relate to your interest in this story. Can you talk about that a little bit?
SUSAN: Yeah, for sure. So my memoir Empty, it tells the story of of the eating disorders. I kept the secret. for decades, binge eating disorder and anorexia. And it's primarily focused on my adolescence and college years and very early adulthood. I mean, I do think that I have an abiding interest in women's bodies. In how our bodies can be you know, determinative, how they can suggest certain identities, how they can preclude certain identities, how our bodies can, you know, hold lots of possibilities. Like, I noticed I just said the sort of negative. parts first, I think, because it took me until I was in my mid forties when I finished this book and published it to understand the possibilities of a body, the transformative possibilities of living in and living from a body and taking pleasure in my body in a way that it's not that I had never taken pleasure in it. There were certainly things I did that gave me pleasure, but there was a lot of self loathing directed at my form. I'm trying to think if there's another way to describe the connection between the book and the podcast, beyond just the fact that I do think that. That we have a lot of stories about living in these bodies as women.
ELISE: There's a certain point when you talk about the literature on you talk about it as like going up to, I also went to Yale, so it was like Atticus and all of these places I've spent a lot of time, that Atticus chopped salad with so random, canned corn and..
SUSAN: Oh, my God. I can picture that. Now that you said that, I can picture sitting across from somebody at a table. Oh, my God.
ELISE: yes. And I had my own. Weird eating stuff at Yale only primarily because I was depressed. So I was like it wasn't it was not what was happening to you but it was like I sort of liked that salad at Atticus, and I would go and get Denali Moose Tracks ice cream at Yorkside Pizza. And, like, that's kind of what I ate. I mean, it was not good. It was not healthy. And candy. I think I was just so low that I was looking for sugar. However, all of that aside, when I read it, it felt too, like, so, so you write about... So, sitting in the library across from what existed, which wasn't a lot memoirs of anorexia and bulimia and couldn't locate binge eating disorder because you weren't vomiting, you were just binging.
And you talked about it, the way that it was described as these body image disorders. And obviously there's like a lot of dysmorphia, we're all familiar with that. But to me, it also like so much of the book read about your discomfort in just being in a body, right? And, Marion Woodman, who was this Jungian analyst who wrote Addicted to Perfection, and she wrote a lot about anorexia and bulimia as like anorexia is looking, anorexics looking to sort of escape, to like vaporize, become spirit. You talk about that lightness of like trying not to leave treads on the carpet, just sort of your fixation on lightness. So she was like, they just want to disappear and. bulimics tend to want to concretize themselves somehow like make themselves more solid, more real. I don't know if that's resonant, but it felt to me like you were like, no, this isn't actually about image, although clearly it was for you as well, but it felt also about like what it is to be in a body, a woman's body. And then with pregnancy too, it's like you're cohabiting, you're hosting. It's. It's such a strange relationship, this being a woman with a womb, you know?
SUSAN: Yeah. I mean, it's so strange. It is so strange. I mean, I think, you know, the analyst you just mentioned, I think the thing that I've discovered through, you know, the therapy I've done over the past several years is that I've really come to see eating disorders as. as disorders of desire in large part. So in the, you know, the two examples you just gave, you know, the anorexic wants to vaporize and the bulimic, it's sort of more, more concretized somehow. Both of those are about wanting, right? It's about these wants that somehow that the person, you know, desire is somehow disrupted right in the eating disordered patient. And it kind of gets turned back in the body. And when I look back on my history and think of all the, you know, all the wants and desires I wasn't admitting to, right, because of the things that we are conditioned to want, or, you know, ways we're conditioned to be, I think some of that was in there for me.
But then as far as body image, I mean, you know, I definitely grew up in in a family where there was a lot of emphasis on appearance and on weight. You know, we always had like the latest scale from the sharper image. But I Once I started, once I got into the eating disorders, they take on a life of their own and when you were talking earlier about kind of the compulsive and addictive piece that was something that was really big for me during those years in college I write about in Empty. This was in the early nineties. And, I felt, you know, deep, I felt in my bones that, that what I had, this was akin to an addiction, you know, I would binge, I would resolve not to, and, you know, hours later, I would be doing it again, and I would go up to the stacks in Sterling Library, and I would look for information about what I was experiencing, I would read the few memoirs that was, that were available, and And there was, there was nothing right that exactly reflected my experience. And, and I think that, you know, that's an experience. I think a lot of people can relate to is, is having this problem that you know is a real problem, but it's like, it's hard to find, it's hard to name. And maybe that's another connection with with this material in the retrievals, all of these women having this experience of pain that was so real. But that they couldn't, you know, they couldn't figure out. They didn't have enough information about, about what was really happening to them.
ELISE: And these experiences in our bodies are so ephemeral and fleeting and then you question yourself too, as part of it. I mean, that's natural. Was that real? How strong was that compulsion? But was the pain really that bad? And then when you're on the other side of these things, when there's like peace and equanimity, you can sort of devalue everything that came before, which is why I think projects like this are so important. Because yes, You can say, oh, the outcome, you know, nobody died. There were no adverse effects from the saline. I mean, the whole thing is just nuts. And yet, like, it happened and theoretically happens. And how do we Get better or not better, but like how do we yeah acknowledge these experiences and learn and this is important because I think all of The cultural conversations that can invade and and puncture the mainstream particularly around women's health and the concerns of women, it's like that's what makes everyone suddenly say Oh, shit, you know, this happened, right?
And I'm sure Yale was like, Okay, well, this is not good. But like, we're all going to move on. And who knows, it's unclear, right? What changes to procedures that they've made. But it happens because now, You made a podcast that everyone is talking about, and every medical institution I would imagine is saying, What are our procedures? What are our processes? What happens when this, when a woman in the middle of a procedure says, I'm experiencing pain, right? There has to be some sort of cultural reform from this, I would imagine, even if you don't hear about it directly.
SUSAN: Yeah, I mean, I hope so. I really hope so. And I mean, so the the last episode, you know, came out four or five weeks ago, and even in the time since then, you know, I've already seen, for example, like, You know, fertility clinics doing little videos for their patients or little, you know, info for their patients on their website about like, here's the kind of pain relief, here's what to expect. Even that is like, that's great, right? To set expectations about pain to present the, Management of pain as a conversation that can be had. You know, my hope is that I have heard from somebody emailed a couple days ago, a professor saying that she intended to teach it as in an ethics class to first year med students, which, you know, is really amazing and gratifying. So, you You know, I think one of the things that that was so interesting to me in reporting the podcast was so there's this thing that happened at this clinic, right? So the nurse was stealing the fentanyl. The patients weren't getting fentanyl. But part of the reason it took a little while to figure out what was going on, I mean there were multiple reasons, but one of them was that some amount of pain had been normalized around this procedure. There was an expectation that patients would experience a certain amount of pain, partly because the drug combination this clinic was using offered a relatively light level of sedation for the procedure.
And so, I think that's another thing that that I hope becomes part of the conversation, right? We've all had gynecological procedures where that have been painful. And, and they don't have to be. There are some gynecological procedures that are inherently painful. It's a very sensitive area. Sometimes there are emergencies, right? But there are ways to treat the pain of those procedures. And I hope that's a conversation that patients can have there with the doctors and doctors can have with one another.
ELISE: Well, thank you for this. Do you, do you, I know you're probably not going to tell us, but are you working on another book?
Are you working another podcast? What's next? Is there anything that you're really interested in?
SUSAN: I mean, I'm still sort of in that phase where I'm like, just like decelerating from all of this. Like I don't know exactly what's next. I do have a lot of ideas, as you anticipated in your answer, I'm the kind of person who who tends not to say what the thing is until I'm pretty sure it's actually a thing. But you just finished a book, you probably know the feeling of like, you put your heart into something for so long and it's It's sometimes it feels impossible. Like, Oh, what will I ever be interested in again next? I'm not exactly in that. I do always have like other things I'm interested in, but you know what I mean? I'm in transition.
ELISE: no, what's the biggest conversation that you can have about any of these things and then have it on the most like subtle level, which I think you seem to be a master of.
SUSAN: Oh, thank you. Thank you. This was so nice to talk to you.
ELISE: I know. Thank you. I know you've been busy, so I appreciate it. And you probably want nothing to do with the microphone right now. So...
SUSAN: oh no, this is great.
ELISE:Thank for your time. And thank you for this series. And thank you for your beautiful memoir. It's really, I found it just stunning.
SUSAN: Oh, thank you so much. Thank you.
ELISE: There is something just so quiet, ephemeral, and insistent about Susan as a story teller and there’s something about her ability to speak into existence what hasn’t been said in the way that being a woman, and having our own experiences and own bodies can be so isolating, particularly around questions of what is “normal” and was a good woman looks like, feel like. This is from her memoir, Empty: “ A last thing or two about recovery, in the beginning, I was acutely aware I lost. I lost the secret. I lost the “security” of being the thinnest person in the room, on the beach, or in line for an iced coffee. I lost the power to eat nothing and with that I lost the source of my strength. Gradually, I became more aware of what I was gaining. I gained an understanding that the last sentence in that “lost sequence” is ridiculous, profoundly sad. I gained connection with others, which I craved. I gained a voice. There is so much in eating disorder literature about the illness emerging the moment an adolescent girl self-silences or loses her voice. The eating disorder becomes the way you speak, telling the story of what replaced my voice in adolescence was what, in middle age, gave me my voice back or showed me what it could be.” And in Retreivals, she gave a voice to so many woman, and in an experience that is stunning, strange, and all too familiar. I’ll see you next week.
