Battling an Eating Disorder and The Healthcare System with Courtney Stoltzfus-Zvara

Welcome back to the Bite by Bite Podcast.

Eating disorders are isolating, exhausting, and debilitating on their own. Adding in the stress of finding answers within the healthcare system only adds fuel to the already burning fire.

In this episode, Courtney Stoltzfus-Zvara returns to the podcast to talk about her 16 year struggle with an eating disorder and her battle with the healthcare system. Courtney shares the early signs of her eating disorder as she looks back now, the challenges faced while navigating the healthcare system, and the impact of relationships on recovery. 

The discussion also highlights the importance of addressing the psychological aspects of eating disorders, critiquing the medical system's focus on weight restoration, and emphasizing the need for compassion and understanding in treatment. Ultimately, the goal of this episode is to offer hope and validation for those on their own healing journeys and to share harsh realities of the lack of understanding of eating disorders within the healthcare system.

Episode topics:

• Courtney shares the development of her eating disorder spanning over 16 years (2:28)
• Navigating and seeking help within the healthcare system (22:08)
• Courtney shares how her personal relationships positively impacted her recovery (27:24)
• Courtney elaborates on the importance of doing the internal work during recovery (45:32)
• Courtney gives her advice and opinions to medical professionals specifically for eating disorders (52:45)

Content Warning: This episode contains brief mentions of eating disorder behaviors that Courtney has previously engaged in. Please listen in a way that feels safe for you and your recovery. 

Episode guest: Courtney is a sociologist with a philosophical bent. She studied sociology and peace & conflict studies at Gordon (MA), political theory and ethics at the University of Oxford (UK), and completed her postgraduate work in philosophy at University College Dublin (IE). A full-fledged academia-phile, she has conducted research at Oxford, for the European Center for the Study of War and Peace, and for human rights initiatives in Rwanda, Cambodia, and Honduras. She has taught subjects in philosophy and sociology at Trinity College Dublin, Boston University, and Boston College. These days, she is based at Boston College and specializes in the relationship between the body and the social world. Her guiding vocational question is: How does the embodied self experience violence--and what may be done for its flourishing? Currently, she is exploring the role of shame--understood as the internalization of an abstract negative judgement--in the development of eating disorders. 

RELATED EPISODES:

Eating Disorders and Their Relationship with Shame, Perfectionism, Control, and Recovery

Connect with Kait

@bitebybiterecovery

bitebybiterecovery@gmail.com 

Connect with Courtney

stotlzf@bc.edu

Affiliate Links

COMFRT 

FIND THE GOOD 

Chapters

• 2:28 Courtney shares the development of her eating disorder spanning over 16 years
• 22:08 Navigating and seeking help within the healthcare system
• 27:24 The role of Courtney’s relationships in her recovery
• 45:32 Courtney elaborates on the importance of doing the internal work during recovery
• 52:45 Courtney gives her advice and opinions to medical professionals specifically for eating disorders

Transcript

SPEAKER_01: 0:05

Hey there, and welcome to Fight by Bite, the podcast that teaches step by step through the messy, beautiful, and real tiny of my struggle with an eating disorder. And I recovered. I'm Katie, and I'm here to share my own experiences, lessons, and the wisdom I've gathered along the list. Here, I share it all. The raw, the real, and the unconscious. For those of you who know they're not allowed to. And for those of you who haven't got the eating disorder, okay. Before we dive in, we discover that while I call my story about it. This podcast is not a substitute. If you're struggling or need extra support, please reach out to all funmentalhelpfer.com. And one more thing. This podcast is explicit. Because if I'm gonna do something, there's no way in hell I'm gonna leave my personality outfit. So let's dive in. In this episode, Courtney is back for a deeply personal conversation where she explores her 16-year journey with an eating disorder, from its earliest beginnings to finding hope in recovery. Through honest storytelling of her memories, she shares the moments that shaped her illness, the invisible battles no one else could see, and the turning point that led her to seek help. Together, we unpack her experiences navigating the healthcare system for eating disorder treatment, the support she found, the time she felt dismissed, and what she wishes every provider understood about these illnesses. We also talk about how her eating disorder impacted relationships, work, and self-identity and the tools that have been the most powerful in her healing. Whether you're in eating disorder recovery, supporting someone who is, or seeking to better understand the lived reality behind the diagnosis, this episode offers validation, reflection, and hope for those walking their own path to healing. Hi Courtney, welcome back. Thank you for coming back to Bite by Bite for a second time, even though this episode will be a little different from the perspective we did the first time.

SPEAKER_00: 2:16

Kate, thank you very much for having me back on.

SPEAKER_01: 2:19

So the first, if anyone who's listening hasn't listened to the first episode that you were on, that was solely for eating disorder research purposes for your career. So during that conversation, you had alluded to your history of eating disorder. So we decided to have you back to tell your perspective about some things. So can we just start with you taking us back to the beginning and when kind of when your eating disorder manifested in what you remember from now?

SPEAKER_00: 2:52

Absolutely. And I should preface in mentioning that I went about 15 years with an eating disorder and did not recognize it as that. So my experiences in having an eating disorder were understood as a chronic illness. That's how it manifested. So in responding to my eating disorder, um, it's dodgy. And I'll do my best to identify it and explain it as an eating disorder in the best way possible. Beginning with when I realized my body consciousness, I remember becoming very body conscious in the first grade. Um, not so much about weight. I was very insecure about the hairs I had on my arm. Um, I would sit with my arms crossed so as to cover the hairs on my arms. I thought that they were not feminine and thought that it was very unusual. And but then my first memories of exhibiting eating disorder behaviors resemble more uh binge eating as opposed to uh restrictive anorexia, which is um what I struggled with throughout the majority of the time I understand to be my eating disorder. So these binge eating disorders um were not bulimia per se. I grew up in a competitive household uh with a lot of food rules. And so when um what we labeled a bad food, so to speak, or an unhealthy food, such as nachos or pizza, was in front of us, myself and my two siblings uh would attack it voraciously and try to get more than the other person. Um, you know, scarcity mentality really overcame us. And so we, we all, I would say, um, struggled with just savoring food and allowing it to um enrich uh what was happening as opposed to being our our focus and the main center of whatever it was we were doing at that time. So a few years after um, I guess the first memory of this binge eating um body dysmorphia began to develop. And it developed in concord with an onslaught of um weight-centric remarks. So from the age of maybe eight or nine, um, every important voice in my head seemed to have something to say about my body. Um, and worse was that these remarks were tacit. They were use euphemisms with like pointed intent or veiled criticisms. Um, so my mother would tell me that, oh, I would gain weight in the winter, but it's okay because I lost it in the warmer months. And I love my mother. She has her own history and um as a product of her time. So I will continue to bring her up, I believe, throughout the rest of this um interview. But I I wanted to um include that little little caveat real quick. Um, or yeah, so my mother would make comments like that, or my grandmother would just ask me how much I weighed, and I was maybe 10. Um and my That's early, that's young. Yeah, or my brother would insist that I made my little me on the Wii um thicker than she was because it didn't resemble me. And I was told that I looked constipated by like a basketball teammate, or I had a friend who would spend our whole free time bemoaning that she was forced to eat like an apple pie, and then while smearing me for my privilege and never needing to endure um the trials of just natural thinness. So these these very uh veiled criticisms, so to speak. And in the eighth grade, I began comparing girls' bodies. Um and the most beautiful in my mind were the girls who had the thinner physique. And I idolized them as specimens who were free from any need of insecurity. Um, as long as they were thin, I mean, why worry about anything else in the world? Because all of my worries seemed to revolve around my body, my weight. That's what most, if not all, of the negative um remarks I incurred were were about. And um, in the ninth grade, I decided to put an end to my insecurity. And that's when I initiated a very strategic weight loss uh plan. And that was just that was the first time I downloaded a calorie trucker app. And that's also around when they became um available. This was maybe 2011 or so. So smartphones are really gaining in popularity, and you know, apps are uh diversifying in what they offer and services. So my FitnessPal was the most used app on my phone in the ninth grade. I would come home from school and play hours of just dance on the Wii, and that was my cardio, and uh would sort of calculate how many calories I burned doing that. Um and um I should say too that this very strategic and calculated approach to uh weight loss was not completely out of the blue. Before the ninth grade, when I was beginning to develop this body dysmorphia, right from the age of like I eight or nine, um, I would do, I would participate, I would practice some disordered behaviors intermittently. Like I remember maybe being nine or 10 and hula hooping in the front yard whilst my parents packed our car for the drive down to grandma's. And I thought, oh, if I just hula hooped for the remainder of this time until we all load up in the car, I'll lose weight and grandma will be proud of me. So that was a mentality that I had had, um, that weight loss equaled pride or weight loss equaled good, um, weight loss equaled no reason to be insecure. Um, and then yeah, so ninth grade resolved uh to the strategy and my eating disorder flourished. So that's a bit of the background there and the timeline um for the first stage or the development, I should say, of it. And then it continued for let's see, so that was ninth grade. That would have been a uh so it continued for about yeah, 15 years. Um so through high school, through college, through my postgrad, and coming back from my postgrad is um really when I started to hit bottom. And uh, believe we'll go into that more as the podcast continues. Um, but providing just the foundation, I guess, was is what I just shared was for.

SPEAKER_01: 10:26

Yeah, no, that paints a very clear picture. So my question about the dieting, and you don't need to go in specifics about that, but do you feel looking back now that the dieting for the weight loss that you followed by counting calories and tracking your meals and things like that, do you feel like that contributed to the development of what you know now is your was your eating disorder? Or do you feel like you were kind of already there that just kind of fast-forwarded it in a sense?

SPEAKER_00: 10:58

Yeah. So to understand your question correctly, are you asking, was the eating disorder did the eating disorder exist before the tracking of the calories, or did the tracking of the calories exacerbate the eating disorder?

SPEAKER_01: 11:12

Yeah. Like do you think that the dieting was a like it went from diet to eating disorder?

SPEAKER_00: 11:18

Yeah. Um I believe the disorder pre-existed, the dieting, um, just because, yeah, to be disordered is to have a relationship with food that is disordered, right? And I would very much identify as having a disordered relationship with the food. Now, what got tricky though, I mean, you hear this history and think, well, how did you not realize that you had an eating disorder? It was calorie focused, it was weight loss focused. Um, that's me reflecting on it now. Right. Yeah, looking back. Looking back. Yeah. Yeah, retrospectively. I can't identify that as disordered behavior. Um, but in reality, I was dealing with a whole lot of symptoms, um, which I now realize were manifestations of the restricted behavior. You know, you start depriving your body of nutrition, and of course, your GI system is going to start shutting down, and of course, you're going to be ill a lot, and your heart rate's going to plummet, and you're going to be freezing all the time, and um, all these things. So uh, these symptoms were more of a concern to me, and they were more defining of my reality at the time. But now I realize that no, those weren't defining of the reality. They were outcomes of what was, and the outcome being from the eating disorder.

SPEAKER_01: 12:54

So at the time you thought something medically was wrong all by yourself, not that the eating disorder behaviors were causing that. Correct. Um, so what was so what happened when all of those symptoms were kind of coming up, and I would assume kind of overall affecting your quality of life. So were you just going to the doctor like anyone would when they were sick, going to specialists? Like what did that look like?

SPEAKER_00: 13:22

Yeah, it involved a lot of visits to the hospital. And uh it was mostly gastrointestinal, if not always gastrointestinal. Um sorry, looking back, so in high school, actually, we first went to my PCP as I felt intense pain in my abdomen. And my mother noticed that my eating patterns were off, but they didn't seem to be indicative of um conscious restriction or limitation. It's just they were off. And I was complaining about pain and I was experiencing searing pain.

SPEAKER_01: 14:08

And also, I'm assuming not to interrupt you, but I'm assuming when you think of stomach pain just in general, it'd kind of be normal for someone not to want to eat right at that moment because you have a stomachache. Yes, thank you. So there's a lot, there's a lot of room there to just say, okay, she's probably eating a little less or not as often, but that's because she's in this intense pain. Why would she want to?

SPEAKER_00: 14:30

Exactly. Yeah, thank you for explicitly clarifying that. Yeah. Um and the doctor we went to at first was very quick to label it as all anorexia. Um, and she threatened to involve child protective services to um separate me from my family. And this is when you were in high school, right? This is when I was in high school. And my mother was appalled. I I was incredibly fearful. I I love my family. Uh they were an incredibly healthy presence to be around. And when one has a perfectionist mentality to threaten having child services come in is to completely smack that person in the face. Um so that was a very unhelpful doctor. And my my mom was able to get me in contact with um, or I should say, get me an appointment with another doctor, and she had the wisdom to have an x-ray of my abdomen done, and I was incredibly constipated. Um, and that as we now, you know, now it's it's partially due to my restriction. Um, or it was partially due to my restriction. And uh, let's see. Then we continued to see a whole slew of GI specialists, but none of them could figure out the source of the problem.

SPEAKER_01: 16:14

Um so the initial doctor who had said anorexia and had threatened the child services at this point, she was the only doctor who mentioned the possibility of being an eating disorder. The doctors that came after that were like medical lens only for the most part.

SPEAKER_00: 16:34

For the most part, there was one adolescent specialist I saw who took a more holistic approach and um incorporated psychology, but she did not explicitly mention to myself or my mother um any suspicion of anorexia. Um, I'm sure she had suspicion of some sort of disorder relationship with food because I was. My boy said I was scared of food because in my mind that it was contributing to mass buildup that led to constipation. And I was very traumatized um by the incredible pain that was. So yeah, it was was avoiding eating as much as possible uh because I wanted to avoid constipation. So there, you know, the the it doesn't appear to be anorexia. Um, and my mind was very set on just managing my symptoms still and and not a certain physique.

SPEAKER_01: 17:36

So it's kind of that just in general, this thing doesn't make me feel good. Why do I wanna do it or have it?

SPEAKER_00: 17:45

Mm-hmm. Mm-hmm.

SPEAKER_01: 17:47

That's interesting.

SPEAKER_00: 17:49

Yeah, so um we continued to see healthcare professionals throughout um my freshman and sophomore year, and then um we sought healing in actually a more spiritual setting. And that's when I became very aware of just really how judgmental and critical I was about myself and about others, and um prayed to the Lord Jesus to have the compassion that he had expressed towards me in giving himself up so that I may live may live in freedom. And that's when the whole medical situation just really got turned on its head because Kate, when I say the x-rays afterward came back completely normal. My my colon before this time was completely distended, it was ripped up. Um, I had what was called leaky gut, so food was entering my bloodstream. Um, this was all due to the great constipation prior to. And then after this, this experience, um my everything was put back in place and I was able to eat anything I wanted. Um I had food sensitivities and restrictions prior to that. And to me, you know, what is psychological is also very spiritual. So I also want to say, oh, you know, mind-gut connection, if you enter into eating something with grace and with the openness and with openness towards it, excuse me, um, you're less likely to experience sort of stomach pains or cramps because you're not psyching yourself out. Your anxiety is is quelled, so your stomach isn't going to be um irritated by that. So that happened. Um, and I did well junior, senior year. Um then my food sensitivity started to creep back up.

SPEAKER_01: 19:56

And And when you say food sensitivities, are you saying like you like physical sensitivities, like you didn't like a taste or bother your stomach again? Kind of things.

SPEAKER_00: 20:09

So allergies, basically. Oh okay. Yeah, gluten and dairy and certain meats, um, refined sugar. It's really sensitive to that. Um, and just uh a whole slew of of random things. So uh college went through that um and experienced still like a lot of just GI issues, but not nearly as bad as they were in my my high school years. And then um my postgrad began that, and the GI issues really took a turn for the worse. Um and I ended up actually um resigning from the PhD program I was in to move back home because navigating the Irish healthcare system um and also not being around my my family and and friends for support was a bit just too complicated. So moved back and was feeling better, but still encumbered by a number of symptoms. And at this point, I had grown pretty disenchanted with the medical field and I was not looking for help there. Um I really just took it on myself to manage my own symptoms.

SPEAKER_01: 21:29

And uh so back to when you were when you had said that your x-rays came back normal and that everything had kind of normal food sensitivities and all that. So what was going on looking back, was your eating disorder still present there? Or would you say there was a period of time that you weren't okay until the symptoms kind of came back?

SPEAKER_00: 21:55

Yeah. I would say that I would probably say that it was still there.

SPEAKER_01: 22:02

And is that why your symptoms returned? Maybe not the food sensitivities, but more so like the GI stuff again.

SPEAKER_00: 22:11

Yeah, I would say that it was still there because I had not explicitly addressed an eating disorder. I had not, I did not know about it and I did not do the processing required, like the mental processing, the psychological. Physically, medically, I was was healed. But um, I that was just such a grace. I still had to do a lot of internal work, which I was unaware of. And so because that internal work had not been done, it these these issues redeveloped.

SPEAKER_01: 22:43

It's interesting that you say that right there. It just made me think because even though you and I have very different stories and journeys with all of this, that's exactly kind of what you just said is exactly kind of what happened to me. Like when I went to treatment the first time, I became medically okay. I was weight restored, nutrition restored, and I was discharged. But I still hadn't finished the inner work, which in turn, I don't even want to say the eating disorder came back because looking back now, I can say it was probably still there. But that that that just highlights that an eating disorder is not just physical treatment.

SPEAKER_00: 23:21

Exactly. And I'm sure we'll get into, you know, um mainstream medical regard of eating disorders um at some point, but uh that's that's definitely an issue that needs to be addressed and is a pressure.

SPEAKER_01: 23:38

Um so you returned home, symptoms are returning not as bad as they were before, but they're bad enough at this point. So what once you returned home, kind of what what happened?

SPEAKER_00: 23:52

Um, I had to quickly then prepare to leave for um Oxford, England. I had a fellowship that um I was due to be all across the pond for. And so I spent the summer leading up to that um finishing up my dissertation and trying to heal as expeditiously as possible. And because I was doing a little better, I thought, oh yes, I can I can go to Oxford, it'll be okay. Um major also during the summer is I started dating my now husband. And we lamented having to go long distance. Um, so we really expedited uh all the major milestones in a relationship, meeting the parents. I was on vacation with his family two weeks into dating. Um and he he loved me in such a way that rectified my self-worth. Um he actually ended up moving out to Oxford with me, and we were out there and got engaged out there, and then I had to resign from my fellowship because uh I was just too debilitated, and we needed to fly back as soon as possible um to get me to see medical professionals. Um so we flew back in November and um again was looking for help in hospitals um and all GI-related help actually. And while we were seeking help, also we planned our wedding. Uh, we had it three months after we were engaged, and then we moved out to a little coastal town in Massachusetts, and living life with him was a reckoning for myself, just how abnormal my symptom management was and the need for isolation. We had just gotten married and I needed to spend like an hour in the restroom and doing whatever it was to just try to get my stomach to work. And uh, I needed to go to the gym or to run in the morning because that was actually part of my symptom management. Uh, it helped alleviate a lot of the pains that I experienced and made it easier to eat. Um, the little I did eat. Um yeah, was just so exhausted. And eventually, a month after our wedding, Luke and I sought help again. Luke is my husband. Luke and I sought help again at the hospital. And this time we had somebody on the inside, some um friends of ours uh who were high up. And they made sure that I wasn't just in the ER, but was admitted into the hospital. And there I had a whole team of medics. I had a whole team of GI fellows. I had the hospital psychiatrist, I had the hospital nutritionist, I had um a cardiologist, you know, everything. Everything was being monitored and discussed. And I remember the hospital psychiatrist asking questions, uh, screening questions for an eat for anorexia.

SPEAKER_01: 27:26

And um So at this point, were you still not even thinking that it could have been an eating disorder? Are you still yeah, you you're still thinking this is all medical in your mind at this point?

SPEAKER_00: 27:39

Yes. Um now I did I was flirting with the idea that it could be self-incurred. I I was starting to hit far enough at the bottom that I had been doing quite a bit of just soul searching and uh was discouraged that in my experience of trial I wasn't seeing any fruit. At the time I was deeply steeped in um figures like William Wilberforce or Juliana Norwich or Simone Bay who suffered and were incredibly transformed and productive in their suffering. And I sought some bit of consolation from the agony that they are experienced as I was experiencing agony. I thought I need some solidarity, and so I sought that in these theologians, these philosophers, these social activists. And but I noticed that I was collapsing inward, whereas they were growing outward in their suffering. And so in the hospital, talking to the psychiatrist, I'm being asked these questions like, are you scared to gain weight? Do you um are you scared to gain weight? Do you fear that eating weight, sorry, or do you fear that eating food will lead to weight gain? Or it seemed to be very focused on on weight, these these screening questions. And I continued to answer them in a way uh that led her to believe maybe it's not anorexia, or at least she didn't want to push that on me. So she called it you know, she called it aphid, um, aversion to food or intolerance disorder. Um and so she put me on medications to help me tolerate eating. Um, the GI fellows, they found some sort of weird structural thing that was wrong in my system. Now that is called SMA syndrome, and it was only Because I was so thin. So we can't say that this caused the GI issues that then led me to eat little, that led to my thinness. It was more so these this SMA was because I had lost all of that weight. So it really didn't get to the root of the problem. Um and then, yeah, a week into the hospital stay, I am incredibly dispirited. Like all life has drained from me. I'm hopeless. I just want to get home. And the doctors really very much warned, cautioned us against going home. And they did stipulate if you have a nutritionist, a therapist, and a PCP lined up, appointments lined up all within a week of discharge, we can basically allow you to go home. They were going to hold me there. And Luke didn't know how to respond. Here I was, wanting with every fiber of my being, which was so little left, but it was intense, wanting to stay. Sorry, wanting to leave, excuse me, wanting to leave uh and go home. And the the medical professional saying you should stay. And we're there sobbing on the hospital bed, the both of us. He, I just want to leave. He doesn't know what to do, and he's anxious. I'm his wife, who he wants to live the rest of his life with. And she's ailing, she's things are not looking good. Um, and we decided to go home with the stipulation that if I were to lose any weight while home, we would be back in the hospital. And that's what we did. Um, so we were on my way to the first appointment since being discharged, and that was GI doctor. And we're still processing the hospital stay. And he brought something up along the lines of um the feeding tube that they wanted to install. I was resistant to that. And uh, we continued discussing that a bit more and like, oh, why didn't you want to do the feeding tube? And you know, if I am going to eat, I want it to be natural, I want it to feel right, um, an enjoyable experience. And he then asked the question about like, why does it need to be enjoyable? Why can't it just be to nourish your body? Why, why, why can't it just be for you? And I I didn't know how to answer that. And he said, Are you scared that it might change your body? And I sat with that and I said, Yeah. And he said, Do you do you think it might make you gain weight? And I said, Yeah. And that was the first time I had admitted to myself that I had any sort of um anorexic tendencies or or um weight-focused motives. Uh, as of course, the first time I externalized. And it just is a testament to the power of being cared for and heard um to open somebody up and out. I mean, the medical professionals, a number of them had asked me questions along those lines for years, and I had answered them negatively, not out of a place of deceit, or I was not deceiving them, but really out of misunderstanding, uh, naivety. Um, and also I I tend to be a rather vulnerable person um and in that way still with medical professionals. But if somebody is fishing for what seems like a confession from me, I tend to close that. I do not want to be put in a box. Um, and that's what I felt like these professionals wanted to do because that would be an easy fix, right? Just all right, she's anorexic, restore her weight, have her calorie count, um, and all these things, um, not realizing that actually anorexia is a lot more complicated than that, as all eating disorders are. Um I think I just had a sort of sensitivity to the complexity of it. And so I don't know, it's it's difficult because I I'm trying to read my subliminal mind, right? What was going on unconsciously, and then what I actually did consciously. And I think that that's part of the difficulty of being human is you're navigating your habits and your proclivities, what you, you're, what you tend toward, your actions, and those are those are perceivable. But then what's imperceptible is all of the nitty-gritty psychology that's happening underneath. So that's a little bit of, again, my experience in the medical field.

SPEAKER_01: 35:06

Um so when you say that the medical professionals kind of did ask you questions that were similar to the question that Luke asked you that when you were finally honest about being scared of gaining weight, those questions. When they asked you those questions, was it like an automatic no, like a from your mindset, like a truthful no? Or do you think there was any pondering, like, oh maybe, but you're still gonna say no? Or do you feel like you really were saying no and weren't aware that you were not being dishonest, but you were being honest for what you saw was happening?

SPEAKER_00: 35:46

Yeah. It's almost as if it wasn't a no or yes answer. You kind of danced around it in a lot of ways. I did. Um so you know, are you are you scared to eat? Say, well, I don't want to be constipated, or you know, I I don't want to feel sick and vomit, so I won't eat a lot. Um which again kind of made sense with what your symptoms were. Exactly, exactly. Um so I think because my symptoms were so intense, were intense to the point that they were at the forefront of my mind, I couldn't even think about what happened prior to the symptoms that would have caused them. Right. You're kind of just like, I don't know, I don't care, just make me feel better.

SPEAKER_01: 36:41

Exactly. Yeah. So you had mentioned a few minutes ago about medical professionals and eating disorders. So what in your experience, looking back at it, and even what you know now, what was it like for you to navigate all of that and be able, for lack of a better word, to get away with saying, no, it's not an eating disorder?

SPEAKER_00: 37:07

Yeah. Well, the medical system is terribly limited. It it of course is well-intended, zernest, um, but closed-minded in its understanding of what an eating disorder is, um, specifically anorexia, which is what I was struggling with in what their um screening questions were focused on. So, you know, focused on significantly low body weight or restricted intake, um, due to an intense fear of weight gain, and they're looking for a distorted perception, right, of body weight or shape. Um, it's hyperfixated on weight restoration and the treatment, right? In treatment, it's hyper-focusated, fixated on weight restoration and on a certain calorie consumption. And there's little regard for like the social psychology of eating disorders in both the diagnosis and in the treatment. Um, and based off of my research, this is a critical oversight. And I focus on like particularly shame in the development of eating disorders. And uh this has looked like subjects using eating disorders as a coping or eating disorder behavior as a coping mechanism when they're met with acute visceral anticipation of judgment. Um so it's a way of numbing or avoidance. And so when shame is prevalent, the eating disorder flourishes initially as a way of coping, um, but then the behavior becomes normalized for the individual. And actually there's a bit of a marginal rate of return. It's the the benefit decreases. So you need to restrict more and more and more to get the sort of numbing um or coping required um in the in the moment of shame. So when I met with these practitioners, their focus on my weight and on um my understanding of my thinness was remiss of okay, but really, what are the underlying issues that might be foundational to concerns of weight or body image? And if they were to start asking questions like, do you feel like you manage your anxiety well? Or when you're or just like, what are you afraid of? That would have maybe brought up some red flags. Um and it would have been helpful for me as well in understanding more of why I behave the way I do. Um I have this memory of me pleading to my mom to change schools because I felt as if the pressure of my school environment was really debilitating for my health. And um I made the case uh that it just was way too overachievement focused. The the school didn't have regard for personal, um, personal welfare, a number of things. And while the school was was high performing, these were more just my experiences of it because of my mentality. And if I had met, if and this was all during the time I was seeing all kinds of providers, right? If a provider was to ask me, oh, how is school going, and I were to open up about, oh, it's actually been really difficult in, you know, XYZ, there would be more concern, they would want to address that. Um ideally, they would want to, if they really wanted to fix, you know, the the problem, they would, they would address that, um, and not just fixate on my weight and on um in my intake, really.

SPEAKER_01: 41:36

It's always, and I don't know if you and I have talked about this before, but it infuriates me how hypocritical not only the medical field can be, but also even some, and I'm speaking from experience when I say this, even formal eating disorder treatment can be all about numbers and weight when your entire treatment what do they tell you? Weight doesn't matter, numbers are important. Yet that's how your diagnosis is for m the most part determined. And then that's how my progress was measured. How much weight did I gain in my back to a healthy weight for my height? How many, you know, calories on my meal plan? That's all numbers. And then for in my experience too, it was never about the number on the scale for me. So if a doctor had asked me, Are you afraid to gain weight? No, I'm not. I'm afraid of my body changing, but I don't necessarily care what the number is. So there are many ways that somebody with an eating disorder can honestly answer, no, I'm not afraid to gain weight. And then that flags them out as no issue for eating disorder in the medical fields.

SPEAKER_00: 42:57

Incredibly important anecdote, you know, because neither I wasn't weighing myself. We didn't have a scale in our house. Um, so gaining weight, I didn't know if I was or was not. I just knew that I was liking more and more the way I looked, right? Um, and then what also is complicated about uh whether it's inpatient, outpatient, residential, hybrid, like they aren't fixated as you voiced on weight restoration or calorie intake for the most part.

SPEAKER_01: 43:26

Which I will say too, in some cases, yeah, initially is very important. It is very important. So I don't want to say no, that that's all bad, but I'm just saying in terms of measuring progress.

SPEAKER_00: 43:37

Yes, exactly. Um, yes, because you do need a certain, you need to hit certain health benchmarks in order for you to have the mental capacity and strength to have a morale shift, effective shift, to then reclaim you know, personal agency and find freedom for any disorder. But um, the hyperfixation on um weight restoration and calorie intake is also just very daunting for somebody who is naturally anxious. Um the expectation there is that you're, of course, that that you gain weight, right? And that's a significant body change for somebody who is body conscious. Now, in the research I've been doing, big changes are a critical variable um in predicting um uh an eating, an eating disorder or an uh uptake of eating disorder-related behavior. So if a big change, such as gaining weight happens and you're released from treatment, how how are you going to respond to that? The way you know how. We talked earlier about well, if you're not doing the internal work, the eating disorder is still there and it's going to just reiterate itself after you have, you know, recovered. Um, and that's not to discount the work that you did in in treatment. That's so powerful and good, and you know that you have the strength needed to reach those health benchmarks, right? Um, however, it's the internal work that's going to really um determine whether or not you you sustain your recovery. 50% of those who undergo treatment and are said to have recovered relapse in within 10 years of completing treatment. That is a very high relapse rate. Um and considering that eating disorders are the second deadliest mental disorder, only behind opioid addiction. Um, really, something needs to be done. Um, and that's that's just a crude way of of saying, you know, do better.

SPEAKER_01: 45:50

Figure it out. And that's that's why we're here, right, Kate? That's that's why we're here, yeah. Um it's funny, not funny. It's actually really, really fucking shitty that this is true and that I can relate to it. But what you just said about, you know, when someone who is so body conscious or not even body conscious, just doesn't know how to or doesn't want to, or just really anxious when big changes happen, right? When a big change happens in your discharge from treatment, that's a big change in life. And I remember my last day at formal treatment, I was working on with my clinician, my relapse prevention plan. She had asked me, I don't remember the exact question, but it was something along the lines of, what are you gonna do if this happens? And I if I remember correctly, it was something about my body changing or weight gain, something along those lines. And my answer, and I looked her right in the face and I said, Well, I'll just go back to my eating disorder. Yeah. And ironically. And it's not, and I'm not saying that because I'm choosing it, or I would choose it, but as we've said many times in this episode, and it's just for me specifically, I mentioned this my eating disorder was my coping mechanism. So it wasn't saying that I was gonna choose to go back to it. That was I just knew that that was probably a potential. And not even two years later, I was back in it. So that just goes to say that like that's what I mean when I say that the nutrition restoration, the weight restoration is really only a fraction of the treatment of the process.

SPEAKER_00: 47:35

Yeah, yeah. And what's powerful too, you know, is people who have found recovery, um, and been, you know, like a sustainable recovery, right? To the importance of either people or providers who were very relatable, who knew how to be human and were not just distant clinical practitioners who um gave you a sort of Excel data sheet of eat this, weigh this by this time, and you know, continue and at a rate, a certain fashion. Um, but people who were animated, who would respond to what they were saying almost like a friend. Um and said manner, right? Yeah, yeah, exactly. Exactly. So people really appreciated the help of like recovery coaches, um, of therapists who actually had experience in eating disorder, uh, and eating disorders. My therapist was very experienced. Um, she was a very positive experience in my my recovery journey. Um, I would say shout out to her, but I don't think I should. Hi five. Hi five. Um uh what was I going to say? Um yeah, the the need for relatability in in healing is cannot be overemphasized. Cannot be. Um and like we said before, you know, that requires thinking, that requires providers to be almost more uh providers to have a certain grace about them, to be able to empathize with the patient, to be able to um know their case to the utmost singularity, and at the same time to allow the patient to um express themselves, to to show themselves as opposed to the medical provider trying to fit the patient into some diagnostic scheme.

SPEAKER_01: 49:48

Right. I agree with that. Long way to go there. Um so you're recovered now in a very strong place in that sense. So what just very briefly, like what what was the main thing that got you from your lowest to where you are now? Yeah. And I know there's probably more than one.

SPEAKER_00: 50:14

Yeah. Two key variables come to mind. Um but to to answer to your question for one, uh, it would it would definitely have to be Luke. Um he sorry, I'm getting really emotional. You don't have to answer. Oh, I I I want to put words to it for the sake of anybody out there who is struggling to see how they could ever be worthy. Um there was an unconditionality to his love and also such a hope. He's a visionary, and we loved to imagine. We still love, sorry, we love to imagine together. And when I was grappling in the lowest stages of my eating disorder, um with possibility, you would say, okay, well, what do we want to do together? And we'd want to go on vacation, we'd want to travel, we wanted to have children, we wanted to have people over at our house and serve them um big dinners and have just wine and late nights of conversing and steeping in meaningful dialogue. And I also just wanted to love him um in the ways that he loved me. So given the vision that we we casted together, his investment in me, support and mubbing me into health, and also just his existence and my desire to pour into that in the ways that I could, to love him immensely, uh, were key in motivating me to eat when every bite was difficult or when I was in pain and food was the last thing I wanted, um in restraining me from exercising because I needed to rest uh so I could be present with him later during the day, a number of things. Um, but he just really exemplifies true love uh for me. And I had been, I thought I I knew that in reading the scriptures and and seeing Jesus as an example, but you know, the scriptures say that his love is made complete in our love for one another, and Luke's love of me really has um been a testament to to the reality of that. So yeah, Luke.

SPEAKER_01: 52:46

I'm very happy for you. Thank you.

SPEAKER_00: 52:48

Yeah, thank you, Kate.

SPEAKER_01: 52:50

Yeah, thank you. So just one more question, just because I'm selfishly curious. Um let's just say you have the opportunity to be in the presence of a medical provider who is working with someone who does have an eating disorder. What would you say like to that medical professional? Like what was that one thing you would want them to know?

SPEAKER_00: 53:16

Just know how to be human. Um, know how to relate and empathize and ditch the emphasis on clinical benchmarks, really. Um your patient needs to be loved above all else, so don't try and fit them in a box. If their self is suppressed by the eating disorder, free it. You won't be able to help your patient if they're oppressed by this sickness, right? Um be human. I love that.

SPEAKER_01: 53:52

Thank you.

SPEAKER_00: 53:54

Thank you, Kate. Yeah.

SPEAKER_01: 53:55

Well, thank you for your time again. And yeah, just thank you. I really appreciate you being here and more importantly, opening up about probably I would guess one of the hardest points of your life.

SPEAKER_00: 54:09

So thank you. Yeah, it's hard hard to think that that's more than half my life, but yeah.

SPEAKER_01: 54:16

I feel that same way about my journey, but we're on the other side of it now.

SPEAKER_00: 54:21

Yeah, yeah. Well, it's being redeemed now, right? We're we're using it for good. Absolutely.

SPEAKER_01: 54:29

Thank you so much for joining me for this episode of Fight by Fight. I'm so grateful to be able to share this space with you, and I hope today's conversation brought you some insight, comfort, or maybe even a sense of community. Remember, no matter what you're feeling from, feeling isn't perfect, and every step you take does matter. If you enjoyed this episode, consider sharing a website.