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 people with eating disorders have to say about eating disorders .

Every tagline has to be negative about the BMI from now on. This is a BMI-roasting podcast.

My name is Aubrey Gordon and I am here with my co-host, Michael Hobbs.

Hello.

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 T Public and 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.

Rich and triggering.

It's really the sweet spot that we aim for.

I mean, it's good, but don't listen.

It's a great conversation that you should never hear.

So, OK. Listeners, this is us, this is now. We recorded this episode a couple months ago with one of our great friends, Erin Herrop. And because it's our first guest episode, we forgot to do a lot of, like, basic housekeeping stuff. I played the rough cut for my boyfriend and my boyfriend was like, who is this woman who you're talking to? Like, you don't really introduce her in any detailed way, which I feel bad about because Erin's like a friend of mine.

So we just like 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.

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.

Yeah,

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.

Although, Aubrey is actually absent for much of this episode because she had a weed whacker in the background. So when I was editing it, I would go through and you'd be like, "That reminds me of [wheed whacker noise]." So this was another reason why we're doing this little intro is like this was like one of the biggest nightmares to record, like this was cursed. So if this episode is difficult for you to listen to, know that it was also difficult for us to make it, for logistical reasons.

I really like how many of our intros are just like, "Please don't listen to this episode."

I know, just, we will pay you to stop listening now. So without any more of our current ado, here is our conversation with Erin from December.

Michael Hobbs and Aubrey Gordon's special guest today is Erin Herrop.

Yay!

Hi, Erin.

Hi.

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. So, like, what are you?

I'm working for the University of Denver. I'm one of their incoming assistant professors right now.

Very exciting.

So I met Erin two years ago? Three years ago? When I was writing my article about the obesity epidemic. And we sort of stayed in touch after the article. And, Erin, I've been thinking about you a lot in the last five months because you were the last person I hung out with before quarantine.

Me too!

Do you remember that lunch? We got lunch at a Korean restaurant in early March.

We did an elbow bump.

Yes, exactly. It was that weird time where it's like, "Are we allowed to see people?" Like, neither one of us knew and we were like scrupulously not sharing food. I was like, "Those dumplings look good." And you were like, "Don't touch them."

But 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.

They happen.

They happen. And so, I mean, Erin, do you want to just, like, give us sort of an overview of this issue and like what people should know about it, as like a little encapsulation.

Well I think one of the things that we run into when we talk about eating disorders is that we have this kind of preconceived notion of who are the people with eating disorders.

And if I were to ask you, like, OK, 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.

Yeah,

And 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.

You know, we see people who are very young starting to restrict, but we also have it in middle-aged folks and aging folks as well, in addition to different races, socioeconomic classes, and then body size. And then definitely, you know, gender, sexual orientation.

Yeah, I have the disease of queerness and also the disease of fatness, and also the disease of an eating disorder, look at that. Nailed it.

To me, as someone who's obsessed with things that are true but do not receive very much media coverage, I mean the most shocking thing to me about your work is just the sort of, the headline finding that it appears that the vast majority of people with eating disorders are fat people.

Yeah. My area of specialty looks at anorexia and atypical anorexia. And literally the difference between the two is the weight.

Jesus!

They have the exact same kind of manifestation in terms of behaviors and physical consequences and psychological consequences and what folks are actually doing and thinking and feeling. But whether or not somebody gets one diagnosis or the other is defined based on BMI.

Are there other implications of the difference between typical and atypical? Like does it affect your ability to get insurance reimbursement and stuff?

So 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."

Ohhh. So it's like not "real" anorexia, is like how the medical field considers it.

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.

Super interesting as you're talking about all of this, that it really feels like quite a bit of the ceiling for how we understand eating disorders and who we can recognize them in is really sort of set by, you know, our own existing biases about fatness and fat people, but also about like a wide range of communities, right. Like 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 like zero representation of what that looks like, or eating disorders in people who are living below the poverty line or what have you, right?

Absolutely. For other eating disorders like bulimia and binge eating disorder, they're supposed to be behaviorally defined, where we're looking at 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 like physically presenting when they're delivering some of those diagnoses. So I have people in my study that never, ever qualified for a diagnosis of binge eating disorder but were given that diagnosis. And I would say it's likely because they were fat.

Because the doctor is like, well, you must be binge eating, basically.

Exactly. Exactly. I think oftentimes we're diagnosing, like, how a body looks to us as clinicians instead of really asking all the questions.

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."

Ugh.

That that stuff also plays in, even if it's not sort of like formally written down somewhere, if you're not actively screening for that kind of behavior and have like pretty strict policies in place and that kind of thing, that that is also a way that fat folks sort of get pushed out of even seeing ourselves as having eating disorders, right?

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 that you're delusional. Even when it was accompanied by physical markers, you know like vomiting blood—

Jesus!

—fainting repeatedly, like the missed menstrual cycles, a pulse that was, you know, in the low 30s, which is not good. And that's hospitalizable. If an adolescent came into the emergency room where I work with a pulse of 33, they would absolutely be admitted.

And 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 like three years or something? So people are living with this for a really long time.

Eleven point six years.

Eleven point six years. Jesus Christ.

One of the things, so Dr. Jennifer Gaudiani, who's a physician—

Who I also interviewed for my article, and was really nice.

She wrote a book on, kind of, different ways that bodies manifest starvation. One of the things that I think, like, we picture people who are starving and we assume that every body reacts the same way. And, you know, we picture kind of what we've seen in, like, human rights violations, you know, like, kind of protruding bones kind of situation. And that does happen for some folks, and it doesn't happen for some folks.

So we did starvation studies back before we had IRBs that kept our research a bit more ethical.

Back in the good old Tuskegee days. Back, just like whatever fucked-up thing you can think of, they're like, "Yeah, do it. Sure."

The Mad Men era of research. Which is like, it's amazing what you could get away with.

"Yeah, we're just going to hit people with sledgehammers and see what happens. It's gonna be really interesting."

But we did, we starved people in that era to determine like what happens to a body when it's starved, and we starved healthy men who were physically active and otherwise like normal and healthy. And we put them on a diet, I think it was about 1600 calories, so 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.

Oh yeah.

I mean, I've heard people that are given recommendations for a 1200-calorie-a-day diet.

Yeah, yeah.

And you know, one person tried to cut off his finger because he experienced so much psychosis in that experiment.

Jesus!

Like, 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.

And 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 like A) the effects of starvation are extreme no matter how they play out, just in a physical sense—

Mm-hmm.

—you know, and something that Jennifer Gaudiani points out in her book is that starving bodies look and respond differently. And so you can see some people that get sick very quickly and they get emaciated very quickly.

And some of that also has to do with how large their bodies are before they start restricting. You know, 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 a quote "unhealthy place" in their weight loss. If you take someone in a fat body, I mean, they could lose half their body weight before people even think that it's at all a concern. And for the most of that time, people are going to be congratulating them.

Yeah.

So that sort of, 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.

I would say that based on what I'm seeing, that would be true.

OK.

But I don't know if we have quite enough research, like 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.

Right. Right.

So we'll say that in order for people to qualify for this study on 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.

But 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.

Right.

I think that's what we do know, because we've never really captured just everybody who's restricting or engaging in self-starvation practices.

Right. Right. I mean, I've interviewed people who are like 250 pounds and severely restricting their diet and aren't getting their period.

Yes, yes!

Which is just like a huge red flag for, like, your body is in crisis.

Yes. In the study that I did, which had a range of BMIs for people presenting, it had kind of, down to, you know, 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 like changes in altitude, like if you sit down and then stand up.

Oh, wow.

We are seeing higher rates of orthostasis, where bodies are like, they're not able to adjust, to make those adjustments. So when these people walk up stairs, climb a ladder, stand up, people can fall and lose consciousness because their body, that basic homeostasis function of like regulating your blood pressure to move—

Yeah, holy shit.

—is not happening.

So you're basically saying that there are fat people in a starvation state.

Yes. And there are people who are like right now hospitalized for starvation, like they are there because they are medically unstable and unable to be in the public, and they are in what we call, quote, "obese bodies."

I mean, you know, one of the things that's become more common colloquially is for somebody to talk about, you know, keto or intermittent fasting or these various fad diets, and then somebody will sort of jump into their replies and be like, "Actually, what you're describing is an eating disorder." And so how do we sort of draw the line between people going on a diet for, you know, whatever, it's New Year's, and like actually disordered worrying behavior?

That's the question of the century.

Right, I was hoping you could solve this. I'm sure there's no divergent opinions on this, I'm sure it's not an open debate among scholars at all. So just solve it for us, please.

What I'm about to say is 100 percent correct and undebated.

Good.

But for me, the line comes from like a psychology standpoint. It comes down to how much does this interfere with your life?

Right.

Sometimes when I'm with people, you know, I'll put, like, my hands in like a little circle...

Right.

And I'll say, like, OK, like if this is you, and then if this other hand is like your thoughts about food and your thoughts about exercise, then any kind of planning that goes into a binge or a purge or anything like that or what you're thinking about your butt and how big it is or your body and how much you want to change it and the plans that you have, and like, how much do those two circles overlap?

Right.

For many people with eating disorders, those circles are right on top of each other. Maybe there's just kind of like 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, you know. But like, if you're like, "OK, well, if I think about this 10 percent of my day, am I OK with that?"

I also wonder if because there's so much gray area, that that's one of the reasons why we rely on weight so much, because it's like if somebody's weight is low or 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 like the majority of people who have eating disorders and aren't under 110 pounds or whatever.

Yeah, one of the biggest predictors of weight gain is kind of this repeated weight cycling, like repeated attempts to try and lose weight so that the longer a person tries to lose weight, often instead of like 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, right, because they're at a higher place.

One thing I would say with that kind 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 kind of buffers itself. It kind of is like, "Oh, well, we're going into starvation mode again" and maybe it doesn't take as long, and so it kind of defends that set point that it's at a little bit more rigorously. And so you might see, 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— You know, people in my study there, you know, there is a person who, like her body was just really used to surviving on very, very little food. You know, and 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 just adapted. And she was working overnight, staying up most of the time during the day, going to school and, you know, surviving on—I'm not even going to mention the amount that she was surviving on, because I think 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. And some bodies don't. Some bodies just give out.

Right.

Part of what sort of makes all of this so much trickier is these sort of myths that we have around diet and weight loss, right? This belief that weight loss is a simple sort of 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 sort of conditioned to recognize this one thing, and when that's combined with all of the stuff that we think we know about dieting and weight loss, which is like overwhelmingly just totally wrong, that that creates this, you know, sort of huge gap for people who sort of fall outside of that image to sort of fall into that gap, right? And sort of misdiagnosis, mistreatment, mis- all of this stuff that they pretty deeply need.

Absolutely.

I think one of the things that makes you a good researcher on this and a good clinician is that a lot of this is like what you've been through yourself. Do you mind if we kind of walk through your own story and how you got interested in this?

Sure, yeah. So I definitely grew up in one of those white households in the 90s—

SnackWells!

Oh my God, rice cakes and lots of concern over like fat. And, you know, I mean, even down to things like really gendered way where like, you know, the 2 percent milk was my dad's milk and the nonfat milk was my mom's milk.

I could kind of take those messages that I got that I received about like fatness being bad or fat being bad in general. And the way that I interpreted those messages was that fat was always bad. I kind of took those messages with a child's mind and just took everything to this extreme point.

And so, you know, I mean, I can remember doing like exercises as a five year old. This is something that I have to do and feeling very driven in that.

I can imagine the exact sweatpants you were wearing.

Oh, my God, they were pink and they had cuffs at the bottom.

Yeah, I would have had those pants if I was allowed to have them. Yes.

And I think too like the body dysmorphia started at that age, too. Like, I, I can remember getting like I don't know. Do you guys have like Student of the Week things when you were in elementary school? Yeah, I remember getting this like Student of the Week picture back and I was in third grade, so I was like eight years old and like I was wearing like this one piece, turquoise and magenta. It was really 80s, 90s where we had two-toned top and I was growing out my bangs so they were like smack dab in the middle of my head like a fountain. I remember like getting this photo and like, I refused to take it home to my mom and I. I, like, hit it because I was so embarrassed at how my body looked. Looking at this photo now, because I have it and I'm like, I'm just a normal eight year old kid.

Yeah.

From the kind of that age, I started really paying a lot more attention to what I was eating, cutting more and more things out of my diet, you know, skipping breakfast, skipping lunch, you know, the types of things of how an eating disorder develops side by side, being an athlete and on cross country and volleyball and basketball, like doing all the sports and then kind of like not really surviving and fueling my body much for it, but also feeling like, OK, I don't need that. Like, I can live without it. And if I can live without it, then it's not a need. It's a want. By the time I reached, you know, fifteen years old, my friends had like a little intervention with my parents and we're like, dude, you know, Erin's not OK

From that moment. You know, my parents took me to my doctor. 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. You know, my parents took me to a few nutritionists. I saw a counselor for a while, but I just kept getting worse. And I did end up in one of those bodies like you see in the daytime television, looking pretty scary and medically unstable. You know, it was uncertain if I was going to, like, survive my adolescence or not, you know, and because I never got treatment, I would get, like, a little bit better.

But all those behaviors were still going on. Like, my mom would give me Ensure and I'm, like, watering it down.

So you just, like, muddled through basically? Like keeping these behaviors, but hiding them essentially?

Pretty much, yeah.

Yeah.

I'm still amazed that I like passed high school and college, you know, being like because it took up so much of my time.

I'm just waiting for the part of your story where you tell us that you finally got treatment because someone tweeted at you. Like what you're describing as an eating disorder! Clap back.

It's our responsibility to shit on people on Twitter. Yes.

So when I got to college, I did gain some weight. I started to look like less scary. And I think people kind of relaxed after that. Like, once I was kind of like out of this place where it's like, OK, well, I'm not like fainting anymore and I'm not as underweight as I was. You know, I was still at that point like purging multiple times a day and restricting. But like it passed. Like I was passable in normal society, you know, it continued in this kind of like internal civil war until my third year of college, essentially like it had becomes so out of control again.

And I was playing collegiate sports. I needed to go in for like a physical or something like that. And my heart rate was too unstable. And they said that I had lost my clearance to play rugby and, you know, for me, like I was like, OK, well, I'll just keep doing what I'm doing. I kept at it and eventually, like, I lost clearance to even attend school and was basically kicked out by the academic dean of affairs because because of that heart condition that I had, like I had restricted myself to a place where I was, like, too unstable to, like, be on campus. And they were worried that if I had, like, a heart attack or some kind of heart failure incident, that they'd be liable.

And 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, you know, like at this point in time, like I was in a larger body while these things were happening. I mean, it was larger than it had been before. So it wasn't like a fat body at this point in time, but it was still like I was still thinking in my head, like, well, I was so much worse when I was 15.

Right.

Why is it now that that I'm having heart failure? I was having heart failure because from the age of fifteen to twenty one, you know, I hadn't really been eating.

Right. And also it gave you the larger body, gave people a license to, like, not look too into like, oh, I haven't really seen Erin eating that much.

Yeah

Like, you don't assume that somebody in a larger body is like vomiting a couple of times a day. It doesn't cross your mind because we've been trained

Exactly.

so well to only see these like extreme physical symptoms as a sign of an eating disorder.

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 a refeeding. And they were like, why would you be trying to gain weight? Because, like, your body looks perfect right now as it is.

Right.

You know, and it's like, well, this isn't quite perfect. This is actually pretty sick.

Right. This is also sort of like a maxim in fat activism work is sort of that what we diagnose as disordered in thin people we prescribe in fat people and congratulated fat people, right?

Absolutely

I feel very familiar with the other end of that, which is like you can have an eating disorder, you're too fat. It's not possible. And if you do that, I'm just going to give you Vyvanse because it's clearly binge eating disorder.

Oh no!

Right? And the other end of that is it also works against folks who are not necessarily fat, right?

Yes

Because you sort of get this like your body is perfect as it is. You don't need to change it.

Right.

You look gorgeous!

Yes.

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, right?

Yes.

So did you eventually get into treatment?

I did. So yeah, I was I was kicked out of school and then basically found a doctor who was willing to work with me and a dietician who would see me for sliding fee and a therapist who saw me through this like grant for needy women or something.

But yeah, I did get treatment. And I mean, it was life changing for me at that point. Like, I'd known that I'd needed treatment since I was 15 and I'd been trying, I have like literally boxes, two plastic boxes that are like knee high full of like the journals of me trying to, like, think my way out of it and figure it out, get help. Just over years of trying to like, treat myself by reading books or, you know, 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 with my body.

And they, you know, really working with one of those doctors was the first time where I really saw, like, how devastated my body had become, you know, like I'd lost muscle tone in my face, muscle atrophy in my back so that I couldn't, like, stand up correctly. I had that orthostasis where I would fall if I stood up too quickly. My body was literally like going off line, you know, all of those things that, you know, just start shutting down.

And all these things were getting better. I was getting my period back. I was no longer orthostatic. All these things were kind of coming back online. You know, I could have a baby now if I wanted to. I didn't, but like, I could have. But in my head, like, my body was wrong because I was, like, gaining more weight than my doctor said I should gain, you know, and all of my fears are coming true.

Right? Like all of the things that my eating disorder said about being fat and whatever, like this is true. And yeah, I ended up like having the experience of getting to go back to treatment, you know, four or five years later in a fat body, you know, and again, I was experiencing the same symptoms that I had as a kid. I still had the overexercise, I had the purging behaviours, and I had the restriction, you know, and I was restricting things like, you know, like water that really like that's not adding calories to you.

It's literally just hydrating your body and letting your kidneys and your heart work normally.

Right.

And so I was I was sick, you know, and I and I still inpatient in a hospital for eating disorders, had a therapist tell me that I didn't need to be there and that she didn't believe I had an eating disorder. And I was like she was like, Erin, why? Why are you here? And I was like, because I have an eating disorder. I really want to get better. And she was like, like, why are you here? And I was like, because I want to get better. And she's like, look at all of these. Look at all these people that are here. Do you see how thin they are? And I was like, yeah. And she's like, they're the ones who really need help. You're fine.

Right

It was so poignant because it was like, OK, like the only people, 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.

No way!

You know,

And also they're telling you exactly the same thing that your disorder is telling you. Right? Like they're echoing back to you all of the disordered thinking that is like 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.

Yes. You know, at that point in time, like I had a solid head on my shoulders. I'd experienced what recovery was like in that previous time when I'd gotten better, I knew that they were telling me something wrong. And I also like didn't have the strength of myself yet and my voice to be able to kind of speak back to it.

I was in my head, I was hoping you'd like through a drink in her face or something. I was imagining like a Real Housewives situation. Here's like scratching at each other for a couple of minutes. But that's probably not what happened in real life.

You come back with the hatboxes from Pretty Woman, and go big mistake! Huge!

I did publish an article on that interaction, so that was my slap back I think.

That's yeah. That's the academic equivalent of the Pretty Woman.

Is the idea like that you wish you could have conveyed to those people? You know, if you think of the sort of three square meals a day or like the food pyramid or whatever sort of 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 like the situation and we should all just accept it.

I just think that nourished healthy bodies come in a lot of diverse sizes. Like we know that human beings occur on a bell curve. We know that height is a bell curve. We know that weight is a bell curve. There's I mean, lab values are bell curves, right? Like temperatures. Not everybody is a ninety eight point six.

Right.

I wish we focused on people being, like, nourished as opposed to a specific size. I do think that potentially, if my body story was different, you know, maybe if my eating disorder had lots 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 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?

I don't know. I think it's and it doesn't really matter because that's not a reality that I can access. But what I do know is that, like, 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, my you know, I'm not dehydrated. I have good blood sugars. Like when those things happen, my body is larger than when it was before.

You know, that's a hard thing for someone with an eating disorder to accept because we are taught that thin is healthy and fat is unhealthy. But, you know, at least for me, like, this is where my body's been happy and this is where I've been able to have a child and, you know, sustain the kind of life that I want to live.

You know, I just graduated this summer and I went through my master's in my doctoral program without any medical leaves of absences. And for me, that's a huge deal.

Yeah.

That's like, you know, eight years of school that I did not have to leave because of an eating disorder. And by comparison, it took me eight years to get my undergrad degree because of the number of medical absences that I had to take. And so I did a master's and a doctorate at that time.

Yeah,

And had a kid.

And 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 percent of their body weight.

But if that person has had an eating disorder, them being at a stable weight is a fucking huge accomplishment.

Yes.

And without knowing that, without asking them, like, let's talk through your history of weight, like shut the fuck up. Like for some people, they are fine at the weight that they are. And being told that they need to lose weight is like a very dangerous thing to be telling people without knowing what they've done to attempt to lose weight in the past.

Yeah.

And A) yes, absolutely ask folks about, 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, right?

Yes,

It absolutely should not be. But currently, it is also like figuring out, you know, these are murky waters. We're all going to kind of muddle through a little bit.

Right.

But the muddling through is much better than the assuming that everyone has the same sort of history or that you can tell what someone needs from you as a health care provider just based on their appearance or size. Right?

And also, like, how do we define recovery? You know, sometimes people define recovery by maintaining a certain weight. So for me, like, I would have been considered recovered, even in inpatient, because I was still above the weight that the eating disorder center made for me.

So, Erin, you sort of mentioned a couple of times your dissertation in here. I'm super fascinated by like any and all new research. What was the focus of your dissertation and what were some of the findings that you came away from it with?

So 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. And 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 and like, does it result in people actually getting care or do they get shut down? Like what happens and how long does it take them and what kind of gets in the way?

So I basically recruited thirty nine people that had atypical anorexia, a little more than a quarter of them. So a little more than twenty five percent had never had treatment at all. And for many of them, they were kind of diagnosed through this study. We did an eating disorder assessment as part of the study and then I followed them for a year with their disorder. They filled out kind of those quantitative scales so that we could see how people's body image and depression, anxiety, substance abuse, 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 addressed like how did their disorder develop? What was it like trying to get health care for their disorder? And how has it been trying to get better? You know, we had about 30 percent of the sample that was folks of color, about 20 percent by the end of the study had come out as genderqueer or trans in terms of ages.

People were anywhere from 18. Like I got one lovely volunteer who came like on her 18th birthday and was like, I want to be in this study. And then up to I think seventy six was our oldest participant.

Oh, wow.

And some of those people had journeys of 30, 40 years of struggling with this eating disorder.

Right.

I was going to say, especially considering the kinds of sort of medical impacts that we were talking about earlier, right?

Yes yes.

If you were 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 sort of medical outcomes. When we talk about this kind of like bias and stigma stuff in treatment, it isn't just sort of like a nice bonus. It is in many cases, like very much, I would imagine, a matter of life and death, yeah?

Mm hmm. Absolutely. And like 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 like bone density, arthritis, osteoporosis. In the moment, it's like, oh, OK. Like 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.

And I also didn't know a lot of your participants try to get treatment at various points and weren't successful.

Yes, the most compelling results for me weren't part of the you know, 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, like those sentinel symptoms of starvation, like somebody missing their period, like somebody 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.

Right.

It just completely made that, you know, what could have been a very short time without treatment, a very long time.

It's also darkly funny because the whole point of, like, 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 like straight forward health risks, and it might just be better for someone to be fat and be able to stand up regularly than the alternative like it seems like a pretty easy dilemma.

Yeah. And I know that I'm like I'm relying on some more extreme cases to make a point. But this is happening. And honestly, like these types of physical consequences were not uncommon.

Right.

So what do we know or what do we sort of think about prevalence of eating disorders as it stands?

One thing that impacts prevalence rates is how people are defining their the disease of atypical anorexia and how they're either asking people or not asking people the screening questions. So, 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 seventeen point five and twenty four.

So if you were above a certain weight, it was impossible for you to have atypical anorexia, basically.

Yes. The typical patient with a typical anorexia in some of our larger studies tends to have a higher rate than a BMI of twenty four. Basically, if you require people to lose a greater percentage of weight, they'll be less people that meet that criteria. You know, one study in twenty seventeen used three different cutoffs and they found that like with the lowest cutoff, there is somewhere between like six and 13 percent of people that could qualify for that diagnosis.

Shit, that's high. In the population? Six to 13 percent of Americans.

Yeah.

Wow.

Jesus. God.

This was a relatively small epi study. There were only like twenty five hundred people. So I don't know how much I would trust that specifically.

Right

But at their highest, you know, relying on like a higher level of weight loss, they kind of estimated somewhere between two and two point eight percent, which seems more in line with like other findings from from other studies.

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?

Yeah.

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. And so I continue to believe that you should do that and go on Oprah and talk about it.

I so would love to do that.

Yeah, I mean, it just feels like such a desperately needed conversation. And one of those places where you sort of 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. Right.

That is like undoubtably really terrible for your health. Right. And it just feels like just this one entry point into a conversation both about eating disorders and about weight stigma sort of turns both of those conversations sort of on their ear a little bit.

Yes. The whole idea of refusing to acknowledge the fact that somebody has an eating disorder unless they're below a certain weight, like 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.

Yes.

Also, it runs counter to like everything that anyone in public health will tell you about anything which is like no one in public health or in epidemiology is like, hey, you know what? Just sit on it. See what happens.

Wait for it to get worse,

wait ideally 10 to 11 years and then we'll just see how it plays out.

I mean, what do we know about eating disorders among ethnic minorities, gender minorities? Like what are the intersectional aspects of this?

So generally that they tend to be elevated in populations with trauma?

Yeah,

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 like the environment that you're discharging home to, there could be a mismatch in terms of like building skills.

Right.

And that is something that even in my dissertation work, we definitely found with with folks, particularly from racial and cultural minorities, where in treatment, you know, they're eating like almond butter and toast or something or quinoa and something else.

And and they're not learning how to cook with the foods that their family uses.

Right.

White nutritionists don't know what to do with the kind of foods that these folks are used to eating with their families. And so there's this mismatch of like what it looks like to be a recovering person when we see it through such a white lens that it's like, OK, like I can't see my own recovery anywhere in this picture of recovery that you've painted for me

Right, that like the foods that we conceive of as being healthy are so framed up by the whiteness of the people making those determinations. Right. There was a great piece in The New York Times recently about sort of the whiteness of dietetics. A number of dietitians of color talked about sort of the training that they had gotten that was overwhelmingly just like Mexican food is bad for you. That was just sort of throwing out entire nation's worth of food. Right. Rather than going, what are the nutritional values of these different things? Part of what makes something healthy is that people actually eat it.

Yes. yes!

Also, so there's like word on the street, big diagnosis that's getting increasingly sort of like 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?

So with with orthorexia? So it's restrictive and that people are very much limiting what and how much they eat. And there's a lot of specific concern around the cleanliness and the types of foods that they're eating. So essentially it's a way of kind of like ethical eating or clean eating, going like to a pathological place to a point where a person is no longer able to nurture themselves. For me, that type of disorder kind of fits within anorexia in terms of the types of food fears.

It's just kind of a more specific type of food fear that we're seeing pop up. Other kind of up and coming eating disorders

Ooh the niche, the indie eating disorders, the eating disorders putting out EPs,

Get in on the ground floor everybody!

Purging disorder is where people are not necessarily restricting, but they're still having that purging behavior. So 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 kind of a normal meal, but then they're throwing up afterwards. And then the other two that I would say that just have on your radar, one is called and I don't even know how common this term is, but like the Adonis complex and 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. So we might see people that become really compulsive with things like exercise, weight lifting, that kind of thing. And we see this kind of especially in kind of more testosterone-y places.

Just say gay men, it's OK. You can say gay men.

Well, testosterone-y is the San Francisco treat. So I'm glad ---

I as a gay guy who's been on 10 billion first dates, there is a sense of like feeling out other people to see, like how bad is their body dysmorphia. I have gay male friends who, like, literally won't eat in front of somebody until the seventh or eighth date because they have all these, like, emotional issues around sort of him seeing me eat is going to make him think that I'll be fat later.

Like it's super fucked up. I don't know if that's a rises to the level of an eating disorder, but like 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 like extremely familiar to me.

Overrepresented. Yes.

You said there was one other one, Erin.

Yes. The other one, I would say would be ARFID. It stands for avoidant and restrictive feeding intake disorder. And this tends to happen often with younger kids, although it does happen all the way up through adulthood. And it tends to be people who are feeding averse. But instead of it being kind of driven by this sociocultural narrative of like food makes you fat. I don't want to be fat. There are kind of pushed away from food by things like textures or fears, not fears of becoming fat, but a fear of choking.

Maybe you had some really bad steak once and you had food poisoning for three days. And now you you've gotten to a place where you just can't eat meat even though you're not ethically opposed to eating meat. You just you would like to, but you can't bring yourself to potentially go through that again like we see it resulting in bodies that look very emaciated. And we also see this in larger bodied kids where maybe they're only comfortable eating, you know, highly processed foods like those are the only things that they are kind of willing to experiment with and for them to, like, try eating like a slice of avocado would be like mind warping for them because it's slimy and gushy.

Right.

I mean, there are people that come into clinic that eat five or less foods.

Oh, wow.

But, Mike, you mentioned sort of this like pretty common Twitter interaction, which is somebody tweet 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.

Yes.

So like, 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 sort of how this stuff shows up going, who I think I know someone who meets this criteria. Ooh, uh-oh!

Yeah.

So you're hearing this. You're recognizing behaviors in someone that you know.

Yeah.

What next?

Yeah. What should we tweet at random people who talk about their diet and exercise online, Erin? Who should I be harassing and how?

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, you know, 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?

Mm hmm.

You know, like 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. Right. Like, I think that the kind of finger pointing can be really hard, and especially for somebody that might be actually legitimately knowing that they're struggling. It could be kind of embarrassing to realize that maybe something that they thought was more secret is something that's being noticed.

Erin, you mentioned earlier eating disorders sort of showing up in elders. I'm curious about are there ways that that sort of disordered eating looks different?

First thing from the research is that there's often like 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. So obviously, for some people, it could be an eating disorder relapse, like something that they experienced as a younger person and like it has been kind of reactivated for them. One thing we do know about eating disorders is they're often triggered by transitional events in a person's life.

So that's why things like puberty, going to college, having a baby, or postpartum, often those types of events, life events, can be associated with higher eating disorder behaviors or triggers. So if you think about old age, you know, 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.

Yeah, I would imagine even just something like retirement right

Yea exactly

Being pulled away from your long standing identity as sort of a certain kind of person who knows how to do a certain kind of thing. Right. That that is a pretty massive role shift.

And we had two participants in the study that that was true for them, like and one who had basically waited her entire adult life and just said, like, OK, well, when I retire, that's when I'll try and figure out my eating disorder.

Oh, wow.

And so that was why she got care, you know, 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.

Holy shit.

Good God.

I mean, we should not need a reminder that, like, everyone has problems. But like sometimes we do need a reminder that, like, these are universal issues and they're not just little white teenage girls, they're everybody. And yeah, sometimes you just need a little like, oh, 67 year olds too, OK.

Fat people! Disabled people! Yeah, men! Men!

Yeah, I've dated literally all of them. Aubrey, I know about them. Literally every single one.

Oh my condolences,

But thanks so much for coming on Erin, this was great.

Thanks for having me. This is you know me. I'll take any opportunity I have to talk about this research.

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.

Yeah, well, I'll be back in Seattle.

Yeah. And we can we can we can bump elbows on Zoom next time.

Yes.

So where can people find your work, Erin. And what is your mother's maiden name and Social Security number so people can steal your identity online?

No, I totally need to actually get a webpage.

Oh, yeah.

I don't have one yet, but yeah, google scholar. My DU faculty page will be up probably the end of this week.

OK, are you on Twitter like what is your preferred medium for shouting at people about their dietary habits? Where do you do that?

I'm 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.

You're just still shouting at people out of cars? When you want to comment on them,

Throwing sandwiches at them, you know,

So that's where that's where listeners should find Erin. Just walk around Denver until she throws something at you.

It'll be something soft. She'll throw something soft at you.

Like a tuna salad, like a tuna salad.