Maintenance Phase
Maintenance Phase
Eating Disorders
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Fat people have them too! This week, special guest Erin Harrop tells us about one of America's most under-diagnosed and misunderstood problems. Along the way we talk about elbow bumps, Twitter etiquette and '90s sweatpants. Our content warnings are becoming increasingly threatening.
Here's Erin's faculty page and a bunch of her research!
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Thanks to Mitra Kaboli for production support and Doctor Dreamchip for our lovely theme song!
Aubrey: Hi, everybody and welcome to Maintenance Phase. The podcast where we don't give a fuck what the BMI says about eating disorders. We care what [Mike laughing] people with eating disorders have to say about--[crosstalk] [chuckles]
Mike: Every tagline has to be negative about the BMI from now on.
Aubrey: [laughs]
Mike: This is a BMI roasting podcast.
Aubrey: My name is Aubrey Gordon, and I am here with my co-host, Michael Hobbes
Mike: Hello.
Aubrey: If you'd like to support the show, you can do that at patreon.com/maintenancephase. You can also get t-shirts from us at TeePublic. Today, we have a really rich and potentially triggering conversation that we wanted to share with you all and to give you a little heads-up about.
Mike: Rich and triggering.
Aubrey: It's really the sweet spot that we aim for.
[laughter]
Mike: It's good, but don't listen.
Aubrey: It's a great conversation that you should never hear.
[laughter]
Mike: Okay, listeners, this is us, this is now. We recorded this episode a couple months ago with one of our great friends, Erin Harrop. And because it's our first guest episode, we forgot to do a lot of basic housekeeping stuff. I played the rough cut for my boyfriend, and my boyfriend's like, “Who is this woman who you're talking to? You don't really introduce her in any detailed way.” Which I feel bad about because Erin is a friend of mine. So, we just went into the chatting without really saying that she's a clinician for eating disorders, so she actually sees patients. And she's also a researcher who specifically studies eating disorders in fat people.
Aubrey: We also wanted to mention that because we're talking in pretty unvarnished terms about eating disorders, that there is mention of specific calorie counts in a couple of instances, there are mentions of specific weights in a couple of instances. If that's not something you're up for hearing at the moment, you can just pass this episode right on by. As a fat person who has had an eating disorder, this was a real mind blower to me, personally.
Mike: Although Aubrey is actually absent for much of this episode, because she had a weed whacker in the background.
Aubrey: [laughs]
Mike: When I was editing it, I would go through and you'd be like, “That reminds me of [onomatopoeia].”
[laughter]
Mike: This was another reason why we're doing a little intro is, this was one of the biggest nightmares to record, this was worst. If this episode is difficult for you to listen to, know that it was also difficult for us to make it for logistical reasons.
Aubrey: [laughs] I really like how many of our intros are just, like, “Please don't listen to this.” [laughs]
Mike: We will pay you, just stop listening now.
Aubrey: [laughs]
Mike: Without any more of our current ado, here is our conversation with Erin from December.
Michael Hobbes and Aubrey Gordon's special guest today is Erin Harrop.
Aubrey: Yay.
Mike: Hi, Erin.
Erin: Hi.
Mike: I want to give a good intro for you, but I don't even know what you do now, because you wrote your dissertation, so you're done. What are you?
Erin: I'm working for the University of Denver. I'm one of their incoming assistant professors right now.
Aubrey: Very exciting.
Mike: I met Erin, two years ago, three years ago, when I was writing my article about the obesity epidemic, and we stayed in touch after the article. Erin, I think about you a lot in last five months, because you were the last person I hung out with before quarantine.
Erin: Me, too.
Aubrey: What?
Mike: Do you remember that lunch? We got lunch at a Korean restaurant in early March.
Erin: We did an elbow bump.
Mike: Yes, exactly. It was that weird time where it's like, “Are we allowed to see people?” Neither one of us knew, and we were scrupulously not sharing food. I was like, “Those dumplings look good.” And you were like, “Don't touch them.”
[laughter]
Mike: Today, unfortunately, we are not here to talk about Korean food and handshakes. We are here to talk about Erin's work, which is about eating disorders among fat people.
Erin: They happen.
Mike: They happen. Erin, do you want to just give us an overview of this issue and what people should know about it as a little encapsulation?
Erin: One of the things that we run into when we talk about eating disorders is that, we have this preconceived notion of who are the people with eating disorders. If I were to ask you like, okay, picture somebody with an eating disorder right now in your mind, you would probably be thinking of a young adolescent cis female, you probably picture her being pretty thin, and you'd probably have maybe some sociocultural dialogue about her not wanting to eat or being afraid of certain foods, maybe running a lot at a gym on a treadmill. This isn't to say that young cisgender females who are thin don't get eating disorders. They absolutely do. But I guess it is to say that the picture is a lot bigger than what we paint. We see people who are very young starting to restrict, but we also have it in middle age folks and aging folks as well, in addition to different races, socioeconomic classes, and then body size. And then definitely gender sexual orientation.
Aubrey: Yeah, I have the disease of queerness, and also, the disease of fatness [laughs] also the disease of--[crosstalk] nailed it.
[laughter]
Mike: To me, as someone who's obsessed with things that are true, but do not receive very much media coverage. The most shocking thing to me about your work, is just the headline finding that it appears that the vast majority of people with eating disorders are fat people.
Erin: Yeah. My area of specialty looks at anorexia and atypical anorexia. Literally, the difference between the two is the weight. It has the exact same manifestation in terms of behaviors and physical consequences and psychological consequences, and what folks are actually doing and thinking and feeling. Whether or not somebody gets one diagnosis, or the other, is defined based on BMI.
Mike: Are there other implications of the difference between typical and atypical? Does it affect your ability to get insurance reimbursement and stuff?
Erin: Atypical is considered a different category of eating disorder from anorexia. It's basically the other category of, like, “Something's going on with you, but you're not quite textbook in any particular way.”
Mike: Oh. So, it's not real anorexia, is how the medical field considers it?
Erin: Yes, it's a different code in the ICD-10, and in our DSM, it's a different code. And that significantly impacts people's abilities to get care.
Aubrey: Super interesting, as you're talking about all of this, it really feels quite a bit of the ceiling for how we understand eating disorders and who we can recognize them in, is really set by our own existing biases about fatness and fat people, but also about a wide range of communities. Part of the reason that we don't like see and think about eating disorders and people of color, I would imagine is that there's zero representation of what that looks like or eating disorders in people who are living below the poverty line or what have you, right?
Erin: Absolutely. For other eating disorders like bulimia and binge eating disorder, they're supposed to be behaviorally defined, where we're looking at a frequency and occurrence of bingeing and purging and compensatory behaviors. But what I'm finding and what people are reporting to me in my research is that clinicians seem to be more in tune to how a person is physically presenting when they're delivering some of those diagnoses. So, I have people in my study that never ever qualified for diagnosis of binge eating disorder, but were given that diagnosis. I would say, it's likely because they were fat.
Aubrey: Because the doctor is like, “Well, you must be binge eating basically.”
Erin: Exactly. Oftentimes, we're diagnosing how a body looks to us as clinicians, instead of really asking all the questions.
Aubrey: Also, anecdotally, just from having talked to a lot of fat people over a long period of time, I can't tell you how many people seek out inpatient treatment for their eating disorders, and then are met with clinic staff who say things like, “I don't think you really need to be here, it doesn't look like you've missed a meal in a while.” That stuff also plays in, even if it's not formally written down somewhere, if you're not actively screening for that kind of behavior and have pretty strict policies in place and that kind of thing. But that is also a way that fat folks get pushed out of, even seeing ourselves as having disorders, right?
Erin: Absolutely. I would say that that's one of the most distressing and common findings that I found in my dissertation research, is the number of people presenting for care. And being told that, “This is not actually a problem, and you're delusional.” Even when it was accompanied by physical markers, like vomiting blood.
Mike: Jesus.
Erin: Fainting repeatedly, the missed menstrual cycles, a pulse that was in the low 30s, which is not good, and that's hospitalized. If a adolescent came into the emergency room where I work with a pulse of 33, they would absolutely be admitted.
Mike: Also, didn't I read that in your dissertation, Erin, that the average time between somebody having these severe eating disorder behaviors and actually getting care was three years or something. People are living with this for a really long time?
Erin: 11.6 years.
Mike: 11.6 years, Jesus Christ.
Erin: Dr. Jennifer Gaudiani, who's a physician--
Mike: Who I also interviewed for my article and was really nice.
[laughter]
Erin: She wrote a book on different ways that bodies manifest starvation. We picture people who are starving, and we assume that every body reacts the same way. We picture what we've seen in human rights violations, like protruding bones kind of situation. And that does happen for some folks, and it doesn't happen for some folks. We did that starvation studies back before we had IRB's, that kept our research a bit more ethical.
Mike: Back in the good old Tuskegee days.
[laughter]
Erin: Yes.
Mike: Just like whatever fucked up thing you can think of, they're like, “Yeah, do it. Sure.”
Aubrey: The Mad Men era of research, which is like, it's amazing what you could get away with--[crosstalk]
Mike: Yeah, we're just going to hit people with sledgehammers and see what happens. It's going to be really interesting.
[laughter]
Erin: We starved people in that era, to determine what happens to a body when it starved. We starved healthy men who were physically active and otherwise, normal and healthy. We put them on a diet, I think, it was about 1600 calories. Somewhere between 1500 and 1600, which is not even a particularly low caloric benchmark by today's standards, when we hear about some of these crash diets that people are doing. I've heard people that are given recommendations for a 1200 calorie a day diet. One person tried to cut off his finger because he experienced so much psychosis in that experiment, and people became obsessed with food. They read recipes all the time. They started developing some of the eating behaviors that we see in folks with eating disorders, like cutting their food up into small pieces and trying to eat over a long period of time to make it last longer.
Then, we also saw the physical consequences, and then how long people were messed up because of that one instance of starvation in their lives. But what that study shows me is that, A, the effects of starvation are extreme, no matter how they play out, just in a physical sense, and something that Jennifer Gaudiani points out in her book is that starving bodies look and respond differently. You can see some people that get sick very quickly, and they get emaciated very quickly. Some of that also has to do with how large their bodies are before they start restricting. If you have somebody who's already relatively thin, and they start restricting and they lose a certain percentage of their body weight, it can become clear pretty quickly that they are reaching an “unhealthy place” in their weight loss. If you take someone in a fat body, they could lose half their body weight before people even think that it's at all a concern. For the most of that time, people are going to be congratulating them.
Mike: Yeah. That image of eating disorders that we have, what you're saying is that it's the minority of people who are in a starvation state who are going to look like that?
Erin: I would say that based on what I'm seeing, that would be true. But I don't know if we have quite enough research. Most of the research that we have on people who are starving, we already set a BMI component for them to be in the study. We'll say that, “In order for people that qualify for this study on an anorexia, they need to have a BMI below 18.5 or 17.5, depending on what we're specifically looking for and what time period in history.” What I would say from what we know about behaviors in terms of how fat people with eating disorders also eat is that there is a large percentage of folks that are restricting who are in larger bodies. That's what we do know, because we've never really captured just everybody who's restricting or engaging in self-starvation practices.
Mike: I've interviewed people who are 250 pounds and severely restricting their diet and aren't getting their period.
Erin: Yes.
Mike: Which is a huge red flag for your body is in crisis.
Erin: Yes. In the study that I did, which had a range of BMI is for people presenting. It had down to just above a normal, all the way up to a BMI of around 60, I think, that were presenting with things like orthostasis, which is when your body stops regulating its blood pressure in response to changes in altitude. If you sit down and then stand up, we are seeing higher rates of orthostasis, where bodies are like, they're not able to adjust to make those adjustments. When these people walk upstairs, climb a ladder, stand up, people can fall and lose consciousness because their body, that basic homeostasis function of regulating your blood pressure to move is not happening.
Mike: So, you're basically saying that there are fat people in a starvation state?
Erin: Yes, and there are people who are right now hospitalized for starvation. They are there, because they are medically unstable and unable to be in the public. They are in what we call “obese bodies.”
Mike: One of the things that's become more common colloquially is for somebody to talk about keto or intermittent fasting or these various fad diets. And then somebody will jump into their replies and be like, “Actually what you're describing as an eating disorder.” How do we draw the line between people going on a diet for whatever, it's new years, and actually disordered worrying behavior?
Erin: That's the question at the century.
Mike: I was hoping you could solve this. I'm sure there's no divergent opinions on this, I'm sure if [crosstalk] open debate among the--[crosstalk]
[laughter]
Mike: They’ll just solve it for us, please.
Erin: What I'm about to say is 100% correct and undebated. [chuckles] For me, the line comes from a psychology standpoint. It comes down to how much does this interfere with your life? Sometimes when I'm with people, I'll put like my hands in a little circle, and I'll say like, “Okay, if this is you and then if this other hand is, your thoughts about food and your thoughts about exercise, and any kind of planning that goes into a binge or purge or anything like that, or what you're thinking about, your butt and how big it is, your body and how much you want to change it and the plans that you have, and how much do those two circles overlap?”
For many people with eating disorders, those circles are right on top of each other. Maybe there's just a sliver of stuff that they are thinking about or devoting time and energy to, that's not related to their body food or exercise but if you're like, “Okay, well, if I think about this 10% of my day, am I okay with that?”
Mike: I also wonder, because there's so much gray area, that that's one of the reasons why we rely on weight so much, because if somebody's weight is low or if somebody lost X percent of their body weight in X weeks, then it just gives us a way to see that there's the signs of this. But the problem is that then, once we only rely on weight, then we miss the majority of people who have eating disorders and aren't under 110 pounds or whatever.
Erin: One of the biggest predictors of weight gain is this repeated weight cycling, repeated attempts to try and lose weight, so that the longer a person tries to lose weight, often instead of a steady decline in their weight, which would be maybe what they were picturing might happen. What we see is a steady incline in a person's weight, which then often reinforces that cycle for trying to lose weight, because they're at a higher place. One thing I would say, with that of relying on weight is we often miss people who have had disorders for long periods of time, because often when you are restricting and engaging in starvation, the first times that you are doing that, your first weight loss attempts tend to be times when you experience greater weight loss faster.
With more repeated attempts, it's almost as if the body buffers itself. It is like, “Oh, well, we're going into starvation mode again. And maybe it doesn't take as long.” It defends that that set point of it, that it's at, a little bit more rigorously. We might catch people in their first attempts at losing weight, we might catch the eating disorder faster than for people who have been doing this for quite a while, and maybe their bodies have just gotten used to.
People in my study, there was a person, her body was just really used to surviving on very, very little food. By the time that she made it to my study and got a diagnosis and started treatment, she was in a larger body and her body had adapted and she was working overnight, staying up most of the time during the day going to school, and surviving on-- I'm not even going to mention the amount that she's arriving on, because it would be too triggering for listeners. But it's really remarkable how we can miss people for such long periods of time because bodies get used to it. Some bodies don't, some bodies just give out.
Aubrey: Part of what makes all of this so much trickier, is the myths that we have around diet and weight loss. This belief that weight loss is a simple endeavor of calories in versus calories out. So, if you really were having fewer calories in and more calories out, you would look different. We really have been conditioned to recognize this one thing. When that's combined with all of the stuff that we think we know about dieting and weight loss, which is overwhelmingly just totally wrong, that that creates this huge gap for people who fall outside of that image to fall into that gap and misdiagnosis, mistreatment miss all of this stuff that they pretty deeply need.
Erin: Absolutely.
Mike: One of the things that makes you a good researcher on this and a good clinician, is that a lot of this is what you've been through yourself. Do you mind if we walk through your own story and how you got interested in this?
Erin: Sure. Yeah. I definitely grew up in one of those white households in the 90s.
Mike: SnackWell’s.
Erin: [laughs] Oh, my God. Rice cakes. [chuckles] And lots of concern over like, fat. Even down to things a really gendered way where like, the 2% milk was my dad's milk and the nonfat milk was my mom's milk. I could take those messages that I got that I received about fatness being bad or fat being bad in general. The way that I interpreted those messages was that fat was always bad. I took those messages with a child's mind and just took everything to this extreme point. I can remember, to me, exercise is as a five-year-old, this is something that I have to do and feeling very driven in that.
Mike: I can imagine the exact sweat pants you were wearing.
Erin: Oh my God. They were pink and they had cuffs at the bottom.
Mike: Yeah.
[laughter]
Mike: I would have had those pants if I was allowed to have them.
Erin: I think, too, the body dysmorphia started at that age, too. I can't remember getting-- I don't know. Do you guys have like Student of The Week things when you were in elementary school?
Mike: Yeah.
Erin: I remember getting this like Student of The Week picture back when I was in third grade. I was eight years old, and I was wearing this one-piece turquoise and magenta. It was really 80s, 90s wear, like a [laughs] two tone top. I was growing out my bangs, so they were like, smack dab in the middle of my head like a fountain. I remember getting this photo, I refuse to take it home to my mom and I hid it because I was so embarrassed at how my body looked. Looking at this photo now, because I have it, and I'm just a normal eight-year-old kid. From that age, I started really paying a lot more attention to what I was eating, cutting more and more things out of my diet. Skipping breakfast, skipping lunch, the types of things of how an eating disorder develops. Side by side, being an athlete and on cross country and volleyball and basketball and doing all the sports and then not really surviving and fueling my body much for it, but also feeling like, “Okay, I don't need that. I can live without it.” If I can live without it, then it's not a need, it's a want.
By the time I reached 15 years old, my friends had a little intervention with my parents. We're like, “Dude, Erin's not okay.” From that moment, my parents took me to my doctor, and my doctor diagnosed me with anorexia. Also, my family was low income, we had no insurance, there wasn't really a way to treat it. My parents took me to a few nutritionists. I saw a counselor for a while, but I just kept getting worse. I did end up in one of those bodies, like you see in the daytime television, looking pretty scary and medically unstable. It was uncertain if I was going to survive my adolescence or not, because I never got treatment. I would get little bit better, but all those behaviors were still going on. My mom would give me Ensure, and I'm watering it down. [laughs]
Mike: You just muddled through basically, like keeping these behaviors, but hiding them essentially?
Erin: Pretty much. Yeah. I'm still amazed that I past high school and college, because it took up so much of my time.
Aubrey: I'm just waiting for the part of your story where you tell us that you finally got treatment because someone tweeted at you.
[laughter]
Aubrey: What you're describing is an eating disorder.
[laughter]
[crosstalk]
Mike: It's our responsibility to shit on people on Twitter. Yes.
Aubrey: [laughs]
Erin: When I got to college, I did gain some weight. I started to look less scary. People relaxed after that. Once I was like, out of this place where it's like, “Okay. Well, I'm not like fainting anymore. I'm not as underweight as I was.” I was still at that point purging multiple times a day and restricting but it passed, I was passable in normal society. It continued in this internal Civil War until my third year of college, essentially it becomes so out of control again, and I was playing collegiate sports. I needed to go in for a physical or something like that. And my heart rate was too unstable. They said that I had lost my clearance to play rugby. For me, I was like, “Okay, well, I'll keep doing what I'm doing.” I kept at it. Eventually, I lost clearance to even attend school and was basically kicked out by the academic dean of affairs because of that heart condition that I had. I had restricted myself to a place where I was too unstable to be on campus. And they were worried that if I had a heart attack, or some kind of heart failure incident that they'd be liable. I was so mad, because I was like, “I'm a 4.0 student.” School and my eating disorder was all I really had going on for me.
At this point in time, I was in a larger body while these things were happening. It was larger than it had been before. So, it wasn't a fat body at this point in time. I was still thinking in my head, like, “Well, I was so much worse when I was 15. Why is it now that I'm having heart failure?” I was having heart failure, because from the age of 15 to 21, I hadn't really been eating.
Mike: Right. Also, it gave you the larger body gave people a license to not look too into, like,
“Oh, I haven't really seen Erin eating that much.”
Erin: Yeah.
Mike: You don't assume that somebody in a larger body is vomiting a couple times a day, it doesn't cross your mind, because we've been trained so well to only see these like extreme physical symptoms as a sign of an eating disorder.
Erin: Yeah. Partway through that body restoration process, someone had asked me directly about it or something. And I was like, “Well, yeah, I'm in the middle of refeeding.” They were like, “Why would you be trying to gain weight? Because your body looks perfect right now as it is.” It's like, “Well, this isn't quite perfect. This is actually pretty sick.” [laughs]
Aubrey: This is also a maxim in fat activism work, that what we diagnose as disordered in thin people, we prescribe in fat people and congratulated fat people.
Erin: Absolutely.
Aubrey: I feel very familiar with the other end of that, which is like, “You can't have an eating disorder, you're too fat. It's not possible. And if you do, then I'm just going to give you Vyvanse, because it's clearly binge eating disorder.” The other end of that is, it also works against folks who are not necessarily fat, because you get this, like, “Your body is perfect as it is, you don't need to change. You look gorgeous.” Which just reinforces that same framework of thinking that there is a right kind of body to have, and that your body is being monitored by the people around to you.
Erin: Yes.
Mike: Did you eventually get into treatment?
Erin: I did. [chuckles] I was kicked out of school, and then basically found a doctor who was willing to work with me, and a dietitian who would see me for sliding fee, and a therapist who saw me through this grant for needy women or something. But, yeah, I did get treatment. It life changing for me at that point. I had known that I needed treatment since I was 15, and I've been trying-- I have literally boxes, two plastic boxes that are knee high full of the journals of me trying to think my way out of it and figure it out and get help. Just over years of trying to treat myself by reading books, or getting the very limited treatment that was available. And then finally, to be in a place where it was like, I had people who knew and understood and could figure out what was going on my body. And they really working with one of those doctors was the first time where I really saw like how devastated my body had become. I'd lost muscle tone in my face, muscle atrophy in my back, so that I couldn't stand up correctly. I had that orthostasis where I would fall if I stood up too quickly.
My body was literally going offline. All of those things that just start shutting down. All these things were getting better. I was getting my period back, I was no longer orthostatic. All these things were coming back online I could have a baby now if I wanted to. I didn't, but I could have. In my head, my body was wrong, because I was gaining more weight than my doctor said I should gain. And all of my fears are coming true. All of the things that my eating disorder said about being fat and whatever, like, this is true.
I ended up having the experience of getting to go back to treatment four or five years later in a fat body. Again, I was experiencing the same symptoms that I had as a kid. I still had the overexercise, I had the purging behaviors, and I had the restriction, and I was restricting things like water that really-- that's not adding calories to you. It's literally just hydrating your body and letting your kidneys and your heart work normally. I was I was sick, and I still inpatient in a hospital for eating disorders. I had a therapist tell me that I didn't need to be there, and that she didn't believe I had an eating disorder. She was like, “Erin, why are you here?” I was like, “Because I have an eating disorder, I really want to get better.” But why are you here?” I was like, “Because I want to get better.” And she's like, “Look at all these people that are here. Do you see how thin they are?” I was like, “Yeah.” She's like, “They're the ones who really need help. You're fine.” It was so poignant, because it was like, okay, the people that should be able to help me, that are supposed to be experts in this, don't even believe that my insurance is right for covering me to be here. [laughs]
Mike: No way. Also, they're telling you exactly the same thing that your disorder is telling you. They're echoing back to you all of the disordered thinking, that is the entire purpose, why you're there is to break the cycle of disordered thinking. And they're telling you the same thing, word for word, “You don't deserve to be here.”
Erin: Yes. [chuckles] At that point in time, I had a solid head on my shoulders. I'd experienced what recovery was in that previous time, when I'd gotten better. I knew that they were telling me something wrong. I also didn't have the strength of myself yet and my voice to be able to speak back to it.
Mike: I was in my head, I was hoping you'd like threw a drink in her face or something. I was imagining like a Real Housewives situation.
[laughter]
Mike: Here's like scratching at each other for a couple of minutes. But that's probably not what happened in real life.
Aubrey: You come back with the hat boxes from Pretty Woman and go, “Big mistake. Huge.”
[laughter]
Erin: I did publish an article on that interaction. That was my slap back, I think.
Aubrey: Yeah, that's the academic equivalent of the Pretty Woman. [crosstalk]
[laughter]
Mike: Is the idea that you wish you could have conveyed to those people, if you think of the turn of three-square meals a day, or the food pyramid, or whatever we're supposed to be eating, is the idea that simply some people, they're just going to be larger than other people? And that's just the situation and we should all just accept it?
Erin: I just think that nourished healthy bodies come in a lot of diverse sizes. We know that human beings occur on a bell curve. We know that height is bell curve, we know that weight is a bell curve. Lab values are bell curves, like temperatures. Not everybody's a 98.6. I wish we focused on people being nourished as opposed to a specific size. I do think that potentially, if my body story was different, maybe if my eating disorder had lasted for a smaller portion of my life, maybe my body would be different today. I don't know that. I hear that's a common thing that many people think about is, like, if I'd never started dieting, or if I never had an eating disorder, how big would my body be today? It doesn't really matter, because that's not a reality that I can access. But what I do know is that, I was a thin child, I had a major eating disorder, and now when my lab values are good, and when my homeostasis is good in terms of like, “Oh, my blood pressure is working. I'm not dehydrated. I have good blood sugars.” When those things happen, my body is larger than when it was before. That's a hard thing for someone with an eating disorder to accept because we're taught that then is healthy and fat is unhealthy, but, at least for me, this is where my body's been happy and this is where I've been able to have a child and sustain the kind of life that I want to live.
I just graduated this summer, and I went through my master's in my doctoral program without any medical leaves of absences. [chuckles] For me, that's a huge deal. That's eight years of school that I did not have to leave because of an eating disorder. By comparison, it took me eight years to get my undergrad degree because of the number of medical absences that I had to take. I did a master's in a doctorate in that time, and had a kid.
Mike: This is yet another reason why it's so important for doctors, and just people in general to not use weight as a marker of health because there's a lot of people who they come in, “And according to their BMI, they should lose 20% of their body weight.” But if that person has had an eating disorder, then being at a stable weight is a fucking huge accomplishment. Without knowing that, without asking them, “Let's talk through your history of weight.” Shut the fuck up. Firstly, people they are fine at the weight that they are and being told that they need to lose weight is a very dangerous thing to be telling people without knowing what they've done to attempt to lose weight in the past.
Erin: Yeah.
Aubrey: Yes, absolutely ask folks, particularly about their histories with disordered eating. But also recognizing that based on everything we've talked about today, some folks may not know because even honestly, knowing that you have an eating disorder is a privilege. It absolutely should not be. But currently it is. Also, figuring out, these are murky waters, we're all going to kind of muddle through a little bit. But the muddling through is much better than the assuming that everyone has the same history, or that you can tell what someone needs from you as a health care provider just based on their appearance or size--[crosstalk]
Mike: Mm-hmm.
Erin: Also, how do we define recovery. Sometimes people define recovery by maintaining a certain weight. For me, I would have been considered recovered even in inpatient, because I was still above the weight that the eating disorder center right made for me.
Aubrey: Erin, you mentioned a couple of times your dissertation in here. I'm super fascinated by any and all new research, what was the focus of your dissertation? What were some of the findings that you came away from it with?
Erin: The focus of my dissertation was really to try and shine a light on the specific experience of atypical anorexia and to try to understand it. Particularly, I was interested in some of those medical experiences that I think, Aubrey, you alluded to a little bit with, like, what happens when people try and get care? Does it result in people actually getting care? Or, do they get shut down? What happens? How long does it take them and what kind of gets in the way? I basically recruited 39 people that had atypical anorexia. A little more than a quarter of them, so a little more than 25%, had never had treatment at all. For many of them, they were diagnosed through the study. We did an eating disorder assessment as part of the study.
Then, I followed them for a year with their disorder, they filled out those quantitative scales, so that we could see how people's body image and depression, anxiety, substance use, how it went over the course of a year. And then I talked with them in three in depth interviews, at the beginning of the study six months in and then at the very end. And those interviews address, how did their disorder develop? What was it trying to get health care for their disorder? And how has it been trying to get better? We had about 30% of the sample that was folks of color, about 20%, by the end of the study had come out as gender queer or trans. In terms of ages, people were anywhere from 18, like, I got one lovely volunteer who came on her 18th birthday and was like, “I want to be in this study.” [chuckles] And then up to, I think, 76 was our oldest participant.
Mike: Oh, wow.
Erin: Some of those people had journeys of 30-40 years of struggling with this eating disorder.
Aubrey: I was going to say, especially considering the kinds of sort of medical impacts that we were talking about earlier. If you're falling down when you try to stand up, someone who normally has a period and starts missing your period, and that is happening. Those are significant medical outcomes. When we talk about this bias and stigma stuff in treatment, it isn't just a nice bonus. It is in many cases very much, I would imagine a matter of life and death.
Erin: Mm-hmm. Absolutely. Some of those long-term consequences that we mentioned earlier, like when you don't get your period for that long, that has a big impact on things bone density, arthritis, osteoporosis. In the moment, it's like, “Oh, okay. I'm not getting my period, yay.” But down the line, when these things become more chronic, it can have some really significant impacts on your quality of life later on.
Mike: Also, didn't a lot of your participants try to get treatment at various points and weren't successful?
Erin: Yes, the most compelling results for me weren't part of the, like, yes, people waited a long time. But people were actively engaging with their medical systems trying to get help for many of them. People presented with things that should have been caught. Those Sentinel symptoms of starvation, like somebody missing their period, like somebody's fainting. It should at least be occurring to us and the fact that people were reporting these symptoms and not hiding them, and presenting for care and still being told, essentially, you're too fat to have an eating disorder by many people. It just completely made that, what could have been a very short time without treatment a very long time.
Mike: It's also darkly funny because the whole point of people need to be thin, is for their health. So, it's weird to be, like, “No, you'll obviously be healthier when you're thin.” When most people in the population would recognize vomiting blood, passing out when you stand up out of a chair as straightforward health risks and it might just be better for someone to be fat and be able to stand up regularly than the alternative. It seems a pretty easy dilemma.
Erin: Yeah. I know that I'm relying on some more extreme cases to make a point. But this is happening. Honestly, these types of physical consequences were not uncommon.
Aubrey: What do we know or what do we sort of think about prevalence of eating disorders, as it stands?
Erin: One thing that impacts prevalence rates, is how people are defining their disease of atypical anorexia, and how they're either asking people or not asking people the screening questions. For instance, one of the studies that I found that had one of the lowest rates of prevalence for any country was a study that required people to be between a body mass index of 17.5 and 24.
Mike: So, if you were above a certain weight, it was impossible for you to have atypical anorexia basically?
Erin: Yes. The typical patient with atypical anorexia in some of our larger studies, tends to have a higher weight than a BMI of 24. Basically, if you require people to lose a greater percentage of weight, there'll be less people that meet that criteria. One study in 2017 use three different cut offs, and they found that with the lowest cut off, there was somewhere between 6% and 13% of people that could qualify for that diagnosis.
Mike: Shit, that's high in the population, 6% to 13% of Americans?
Erin: Yeah.
Mike: Wow.
Aubrey: Jesus, God.
Erin: This was a relatively small epi study, there were only 2500 people. I don't know how much I would trust that specifically. But at their highest relying on a higher level of weight loss, they estimated somewhere between 2% and 2.8%, which seems more in line with other findings from other studies.
Mike: Do you remember at our lunch at the Korean restaurant, that I was trying to convince you to write a book about this, that would become a massive bestseller?
Erin: Yeah.
Mike: There's a lot of people that are crying out for help, and aren't getting it because nobody wants to admit that this is an actual thing. I continue to believe that you should do that and go on Oprah and talk about it.
Aubrey: [laughs]
Erin: I so would love to do that.
Aubrey: It just feels such a desperately needed conversation. And one of those places where you peel back the very thin veneer of like, “I'm concerned about your health.” And that is used to propel so much of this stuff. That is like, “Undoubtedly, really terrible for your health.” [chuckles] It just feels this one entry point into a conversation, both about eating disorders and about weight stigma turns both of those conversations on their ear a little bit.
Mike: Yes. The whole idea of refusing to acknowledge the fact that somebody has an eating disorder unless they're below a certain weight. Basically, unless their eating disorder is so severe, that they're about to die, just feels bananas. To me, it's like, “We only want to treat alcoholism, if you've had four drunk driving accidents.” “Sorry, if you've had three drunk driving accidents, I don't see the problem.” It's like, “What? You're mistaking the effect for the disease.”
Erin: Yes.
Aubrey: Also, it runs counter to everything that anyone in public health will tell you about anything is, like, no one in public health or in epidemiology is like, “Hey, you know what? Just sit on it. See what happens.”
Mike: Yes. Wait for it to get worse.
Aubrey: Wait, ideally, 10 to 11 years.
[laughter]
Aubrey: And then we'll just see how it plays out.
Mike: What do we know about eating disorders among ethnic minorities, gender minorities? What are the intersectional aspects of this?
Erin: Generally, that they tend to be elevated in populations with trauma, I do have a colleague who has been running some data out of a treatment center and looking at specifically with indigenous folks, the gains that they make in treatment, they're struggling to maintain when they're discharged. If the treatment environment is so different from the environment that you're discharging home to, there could be a mismatch in terms of building skills. That is something that even in my dissertation work we definitely found with folks, particularly from racial and cultural minorities who were in treatment, they're eating almond butter and toast or something or quinoa and something else. They're not learning how to cook with the foods that their family uses. Nutritionists don't know what to do with the kind of foods that these folks are used to eating with their families. There's this mismatch of what it looks like to be a recovering person when we see it through such a wide lens. That it's like, “Okay, I can't see my own recovery anywhere in this picture recovery that you've painted for me.”
Aubrey: Right. The foods that we conceive of as being healthy, are so framed up by the whiteness of the people making those determinations. There was a great piece in The New York Times recently about the whiteness of dietetics. A number of dietitians of color talked about the training that they had gotten that was overwhelmingly just like, “Mexican food is bad for you.” That was just throwing out tired entire nations worth of food. Rather than going, “What are the nutritional values of these different things?” Part of what makes something healthy is that people actually eat it.
Erin: Yes.
Aubrey: Word on the street, big diagnosis that's getting increasingly more and more media coverage, but isn't necessarily set in the DSM is orthorexia. What are some of the other diagnoses that folks should maybe be aware of?
Erin: With orthorexia, it's restrictive, and that people are very much limiting what and how much they eat. There's a lot of specific concern around the cleanliness and the types of foods that they're eating. Essentially, it's a way of ethical eating or clean eating, going to a pathological place to a point where a person's no longer able to nurture themselves. For me, that type of disorder fits within anorexia in terms of the types of food fears. It's just a more specific type of food fear that we're seeing pop at. Other up and coming [chuckles] eating disorders.
Mike: With a niche, the indie eating disorders.
[laughter]
Mike: That eating disorders putting out EPs.
[laughter]
Aubrey: Getting on the ground floor, everybody.
Erin: Purging disorder is where people are not necessarily restricting, but they're still having that purging behavior. They might eat a normal meal, they're not bingeing, they're not sitting down and eating a whole large pizza and a quart of ice cream. They are eating a normal meal, but then they're throwing up afterwards. And then the other two that I would say, to just have on your radar, one is called, and I don't even know how common this term is, but the Adonis complex. This is something that we see in a lot of young males, cis males. Although I would say that this also comes up especially for like gender queer folks. People who become very obsessed with how large they are, how large their muscles are, and how low body percent fat and that type of thing. We might see people that become really compulsive with things like exercise, weightlifting, that kind of thing. When we see this especially in more testosterone-y places.
Mike: Just say gay men, it's okay.
Erin: [laughs]
Aubrey: Well, testosterone-y is the San Francisco treat. [crosstalk]
[laughter]
Mike: I, as a gay guy, who's been on 10 billion first dates, there is a sense of feeling out other people to see like, how bad is their body dysmorphia. I have gay male friends who literally won't eat in front of somebody until the seventh or eighth date, because they have all these like emotional issues around him seeing me eat is going to make him think that I'll be fat later. It's super fucked up. I don't know if that's of rises to the level of an eating disorder. But there's a lot of pathological body and food shit in gay male culture. I'm sure we're not the only people to get the Adonis thing, but that seems extremely familiar to me.
Erin: Over represented. [laughs] Yes.
Mike: You said there was one other one, Erin?
Erin: The other one I would say would be ARFID. It stands for Avoidant/Restrictive Feeding Intake Disorder. This tends to happen often with younger kids, although it does happen all the way up through adulthood. It tends to be people who are feeding averse. But instead of it being driven by this sociocultural narrative of like, “Food makes you fat, I don't want to be fat.” There are pushed away from food by things like textures or fears. Not fears of becoming fat, but a fear of choking. Maybe you have some really bad steak once, and you had food poisoning for three days. Now, you've gotten to a place where you just can't eat meat. Even though you're not ethically opposed to eating meat, you would like to, but you can't bring yourself to potentially go through that again.
We see it resulting in bodies that look very emaciated. We also see this in larger bodied kids where maybe they're only comfortable eating highly processed foods. Those are the only things that they are kind of willing to experiment with and for them to try eating like a slice of avocado would be mind warping for them because it's slimy and gushy. There are people that come into clinic that eat five or less foods.
Mike: Oh, wow.
Aubrey: Mike, you mentioned this pretty common Twitter interaction, which is somebody tweets something or posts elsewhere on social media something about their keto or their whatever it is that they're doing. Someone else jumps in and goes, “No, that's an eating disorder.” I'm going to go out on a limb and imagine that particular intervention not especially effective.
Mike: Yes.
Erin: [laughs]
Aubrey: As folks are listening to this, I'm sure that they are having the response that I'm having, which is, as you're talking about how this stuff shows up going, “Whoo, I think I know someone who meets this criteria.” “Ooh, uh-oh.” You're hearing this, you're recognizing behaviors and someone that you know. What next?
Mike: What should we tweet at random people who talk about their diet and exercise online?
[laughter]
Mike: And who should I be harassing and how?
Aubrey: [laughs]
Erin: If it's somebody that you know and know well and care about and have some kind of relationship with, I think you can always ask them how they're doing. And you can reflect back like, “Hey, I'm seeing you post a lot about X, Y, or Z. It seems to be taking up a lot of your time. How do you feel about that?” Something that kind of opens up the discussion. I think we can get into trouble when we start saying like, “This is terrible, and this is what you should do. And you need treatment now.” The finger pointing can be really hard. Especially for somebody that might be actually, legitimately knowing that they're struggling, it could be embarrassing to realize that maybe something that they thought was more secret, is something that's being noticed.
Aubrey: Erin, you mentioned earlier, eating disorders showing up in elders. I'm curious about, are there ways that that disordered eating looks different?
Erin: First thing from the research is that there's often different reasons why these eating disorders happen. Some of the things that we don't necessarily take into account as much when folks are younger. Obviously, for some people, it could be an eating disorder relapse. Something that they experienced as a younger person, and it has been reactivated for them. One thing we do know about eating disorders is they're often triggered by transitional events in a person's life. That's why things puberty, go into college, having a baby or postpartum. Often, those types of events, life events can be associated with higher eating disorder behaviors, or triggers. If you think about old age, transitioning out of independent living or into a higher level of care can be that same type of transitional experience that leaves a person feeling out of control or triggered in a way that an eating disorder becomes a bigger part of their lives, for the first time even for some folks.
Aubrey: Yeah. I would imagine even just something like retirement, right?
Erin: Yeah. Exactly.
Aubrey: Pulled away from your long-standing identity is sort of [crosstalk] a certain kind of person who knows how to do a certain kind of thing, that that is a pretty massive role shift.
Erin: We had two participants in the study that that was true for them. One who had basically waited her entire adult life and just said, like, “Okay, well, when I retire, that's when I'll try and figure out my eating disorder.”
Mike: Oh, wow.
Erin: That was why she got care in her late-- I think she was 67 when she got care for the first time. She was just like, “I don't have time to do it now.” [laughs]
Aubrey: Good God.
Mike: We should not need a reminder that everyone has problems, but sometimes we do need a reminder that these are universal issues, and they're not just little white teenage girls. They're everybody. Yeah, sometimes you just need a little like, “Oh, 67-year-olds, too? Okay.”
Aubrey: Fat people, disabled people. Yeah. Men.
Mike: Yeah. I have dated literally all of them, Aubrey.
[laughter]
Mike: I know about them, literally every single--
[laughter]
Aubrey: Oh, my condolences, bud.
Mike: Thanks so much for coming on, Erin. This was great.
Erin: Thanks for having me. You know me, I'll take any opportunity if I have to talk [chuckles] about this research.
Mike: Well, I'm bummed that we can't go to that Korean restaurant anymore, because now you live in Denver, and it's going to be harder.
Erin: Yeah. Well, I'll be back in Seattle.
Mike: Yeah, we can bump elbows on Zoom next time.
Erin: Yes.
[laughter]
Mike: Where can people find your work, Erin? What is your mother's maiden name and social security number, so that people can steal your identity online?
[laughter]
Erin: I totally need to actually get a webpage. I don't have one yet. But, yeah, Google Scholar, my DU faculty page will be up probably the end of this week. [laughs]
Mike: Okay. Are you on Twitter? What is your preferred medium for shouting at people about their dietary habits? Where do you do that?
Erin: I am a little old school. I usually do Facebook, but I'm trying to transition over to Twitter because that's where all the academics are.
Mike: You're just still shouting people out of cars-
[laughter]
Mike: -when you want to comment on them? [laughs]
Aubrey: Throwing sandwiches at them.
[laughter]
Mike: That's where listeners should find Erin. Just a walk around Denver until she throws something at you.
Aubrey: It'll be something soft. She'll throw something soft at you.
Mike: Yeah.
Erin: Like a tuna salad.
[laughter]
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