When you picture the “typical” eating disorder patient, they usually fit into this SWAG stereotype that’s been identified by scholars in the field: that stands for Skinny, White, Affluent, and Girl. Despite this image that society has somehow created and maintained, this demographic is not actually the most impacted by eating disorders. Being “underweight” is one of the key diagnostic criteria someone must meet in order to get diagnosed with “typical” anorexia, and research shows that less than 6% of people with eating disorders are medically underweight. That means a large portion of those struggling with restrictive eating and other behaviors associated with anorexia actually fall under the “atypical” anorexia category.

Sharon Maxwell (@heysharonmaxwell) is a weight-inclusive consultant, a self-proclaimed fat activist, and someone with personal eating disorder experience – atypical anorexia, in particular. They’ve been featured in different nationwide publications telling their story, and have developed a pretty significant following on social media through their activism. Maxwell joined KGNU’s Jackie Sedley for Episode 3 of their limited series, Nourished.

Listen:

APublicAffair_2024-04-10 Jackie Sedley

Transcript:

Jackie Sedley: You are listening to A Public Affair on listener-supported KGNU. This is episode three of Nourished, a limited series hosted and produced by me, Jackie Sedley, about the wild world of eating disorders.

Episode one featured my personal story of eating disorder recovery. Episode two had professionals working to unpack biases against bodies and behaviors around food. And now episode three will offer an additional perspective that we’ve yet to hear firsthand. When you picture the typical eating disorder patient, they usually fit into this SWAG stereotype that’s been identified by scholars in the field. That stands for “Skinny, White, Affluent, and Girl.”

Despite this image that society has somehow created and maintained, this demographic is not actually the most impacted by eating disorders. Being underweight is one of the key diagnostic criteria someone must meet in order to get diagnosed with typical anorexia, and research shows that less than 6 percent of people with eating disorders are medically underweight.

That means a large portion of those struggling with restrictive eating and other behaviors associated with anorexia actually fall under the atypical anorexia category.

Sharon Maxwell is a weight-inclusive consultant, a fat activist, and someone with personal eating disorder experience, atypical anorexia, specifically. I’ve come to cross paths with Sharon through several different avenues. They’re a dear friend of those I’ve met in recovery, they’ve been featured in different nationwide publications telling their story, and they’ve developed a pretty significant following on social media. for their activism. Sharon, thank you so much for joining me this morning.

Sharon Maxwell: Jackie, I’m so excited to be here and thank you for having this conversation and chatting about something that’s just so important.

Sedley: I’m excited to chat about it with you. So I think our listeners would really benefit from hearing your, your personal timeline a bit if you’re comfortable with that. As I mentioned, I offered mine in episode one of the series and I think these stories really create the, the fabric of understanding the complexity of eating disorders for a lot of people when they’re woven together.

Maxwell: Absolutely. I think hearing someone else’s story really, um, touches on our humanity aspect, right?

And it helps us be able to make that connection with other people. Um, so I was raised in an extreme religious environment. And so, within that, beyond just the societal expectations of, what women should look like or assigned female at birth individual should look like. There was also this expectation of what a woman or a girl in this religion should look like.

And so, um, my mom has lived in a larger body most of her life and as long as I’ve been alive, I watched her diet and try to restrict and, um, go through her own disordered eating behaviors, if not actually a clinical eating disorder as well. And I, I witnessed that and I was born into a larger body. And ever since I was, um, ever since I made my entrance into the world, I’ve, I’ve been in a fat body and, that was not, taken very well in that environment.

And so from as long as I can remember, the instructions were to shrink my body. And as a child, my body was supposed to be growing. And I was being told the opposite, right? And so from the age of seven is when, looking back retrospectively, behaviors became more than just disordered, they became a lot more severe, I guess.

So I, around age seven, my mom had gone through this, this bit where she stopped eating everything except for carrots. She was only juicing carrots and that’s it. And her body didn’t take very kindly to it. And she ended up in the hospital and people couldn’t figure out why. People were congratulating her weight loss.

It’s interesting looking back at like the ’90s and the fact that you wouldn’t be able to see that that was anorexia in someone in that, in that moment. Right. But, uh, people were like, “maybe you lost too, too much weight too fast.” But they couldn’t, this phenomenon of why she was as sick as she was.

When she got out of the hospital is when my behavior started really upticking. I started, um, being really fearful around food and I started hiding when I was eating or eating in secret or hiding food. And then really, like only wanting to eat very certain food types. And so then as our body does, it doesn’t know the difference between a diet and a famine, right? Because our bodies are set up for survival. And so, throughout growing up and as we see anyone going on diets and such, we go through cycles. We weight cycle, and so our body will put on extra weight after going through series of restriction . So I was put on my first like official diet at the age of ,10 going to Weight Watchers meetings At 630 on Saturday mornings with my mom bright and early and My body, again, that was supposed to be growing, um, wasn’t losing the suggested one to two pounds per week that Weight Watchers said that a growing child should be losing.

And so I then started abusing laxatives out of our bathroom cabinet on Saturday mornings, not realizing that if I take them right before we get in the car, also laxatives don’t really impact weight loss to be completely transparent, but, um, I thought that that would help me all of a sudden when I stood on the scale.

Um, which by the way, the Weight Watchers meeting was led by a snooty woman in our religion, and I was just terrified to stand on the scale in front of her and like, not have my weight go where it should be. And so I, because I wanted to lose the weight I was told I was supposed to, and because there were repercussions if I didn’t, the behaviors became more extreme.

And then, our religion had our own school, and, uh, this is, uh, for anyone listening, lives in a larger body story ,of, bullying. This is going to be challenging, maybe pause for a moment for yourself to do what you need to do to take care of yourself, but in middle school, I had a teacher who had a room filled with taxidermy animals, which is questionable in and of itself and kind of weird, but regardless, he took attendance and went through roll call.

And when he said my name, I said, “Here, sir,”” as I was supposed to. And he said, I’m not talking to you. I’m talking to the boar on the back of the wall. And there was a wild pig’s head, wild boar’s head, taxidermied on the back of the wall. And the whole class erupted in laughter. And then he said my name again.

And I had to say “Here, sir,” um, twice, once for the boar and once for me. And that happened every single day of my 7th and 8th grade school years in that class. And he even put an old name placard, “Sharon,” underneath the pig’s head. That class was right before lunch. And that’s when purging began.

And then, I went through wild bouts of extreme exercise and movement was only ever something that was used as a form,, honestly, of self-harm, or a punitive measure. It was never something fun or just enjoyable, or to see how strong my body is or whatnot. It was always a form of punitive measure because I was fat.

So the behaviors continued to become more extreme. And I, got my period and then I quickly lost it. And so I ended up going 19 years through this cycle without ever receiving a diagnosis or ever receiving treatment for my eating disorder. Now, granted, the environment I was raised in didn’t believe in mental illnesses.

However, even the physical aspect of the things that I was experiencing because of the severity of my eating disorder. At one point I went to a doctor with my purse filled with sandwich baggies filled with hair because my hair had been falling out in handfuls and, and, uh, I was so distraught, but I also was losing weight, with a specific diet, probably the most rapidly I had ever done before.

And the doctor was like, “great job on that weight loss, keep it up and your hair will figure itself out.” I was passing out and people had no concern. I lost my period for about a decade. Doctors blamed every single thing on my weight and always assumed what my behaviors were around food and movement, never stopped and asked me what they were, never did more investigating because they looked at my size and automatically determined in their head that because of the size, these must be the behaviors.

19 years on diagnosed and untreated with an eating disorder. So I ended up being diagnosed with atypical anorexia subtype purging. With anorexia. You can have subtype binge purge. You can have subtype purging, all the different things. But, um, I, uh, actually initially in treatment was diagnosed with bulimia, which was incorrect.

I didn’t even realize it was incorrect. And when someone told me I, I fought with them for weeks because I was like, there’s no way I can have anorexia. And so. Even after receiving an eating disorder diagnosis, I was still very much like, “there’s no way I, as someone who lives in a fat body can have this eating disorder.”

So, thankfully I finally had a doctor at age 26 ,who sat down with me and, uh, saw me as a human, didn’t just see my size and asked me about my behaviors around food, my behaviors around movement. She told me that she believed I had an eating disorder. I laughed in her face and told her that she was absolutely bonkers and had lost her mind.

And she sent me home to do assessment online. I did it multiple times and wrote out all the reasons why I was the exception to the rule and didn’t have an eating disorder, but had a self-control problem. And it’s interesting, Jackie, because when I walked into this doctor’s office, it’s like I walked in after conditioning of 26 years of medical care that was harmful, with my arms wide open, almost like asking for willingly, graciously, like with gratitude “Please give me shame. Like, please, like treat me poorly .” And when she met me with compassion and actually called out like behaviors and things like that, it was shocking to me in my system. But thankfully she did encourage me to go get the help I needed.

And, I needed medical attention and I needed medical intervention. And then also the overall eating disorder treatment. And I entered that and have been actively pursuing and in recovery since January of 2018. So, um, we are going on, this is six years now in recovery and I am so grateful to, Dr. Archibeque who helped me get to where it is that I needed to be to start undoing a lot of the damage from a lifetime of living with a lot of anti-fat bias and weight stigma that really propelled and fed my eating disorder. So, yeah.

Sedley: Thank you so much for, for being willing to share that entire timeline.

It really speaks to so much of what we’re going to dive into in the next 45 minutes about the barriers to treatment, the emphasis on helping thinner people with eating disorders, and shaming or perpetuating the disorder in those in larger bodies. I also want to let listeners know that the phone lines are open and that we are taking calls on this show.

So you can call 303-442-4242, or you can email dj@kgnu.org if that is better for you. So Sharon, on episode two of this series, which aired last week, we did talk a lot about atypical anorexia and how, even though more people fit into this diagnostic category than typical anorexia, those with an atypical diagnosis have a much harder time accessing treatment.

Patients with typical anorexia are 14 times more likely to receive recommended treatment than those with atypical anorexia. That’s according to the National Association of Anorexia Nervosa and Associated Disorders. You, you touched a lot on the barriers to treatment that you found. What kind of consequences have you seen as a result of being kept out of treatment spaces once you started to realize and accept the diagnosis you were finally given and wanting to enter those spaces, both mentally or, or health wise?

Sedley: Yeah, so, I think there’s a couple different points to the question you asked that can be touched on. I think that the, the reality, first and foremost, eating disorders are mental illnesses, right? But they are also such physical illnesses as well, because they impact obviously our physical body in really drastic ways. And for me, there were things that ended up going on with a cost personally, medically, I ended up having to have a hysterectomy this last October, that we believe is directly related to 10 years of amenorrhea, which is directly related to weight stigma.

And so ultimately weight stigma sterilized me. So that’s just like in and of itself without even talking about the treatment aspect, there are other portions of my life where weight stigma very much could have taken my life. And so it’s, it’s such a heavy question.

I mean, there’s so, do we even really know how far weight stigma reaches and the amount of harm that it could really, it really causes? I don’t know. As far as accessing treatment, when I was diagnosed with my eating disorder and I was told I needed to be in a residential level of care, I fought that by the way for a really long time, um, and when I finally started getting the message that I needed it, I went to a residential treatment center. I was there for 27 hours. Insurance kicked me out after doing the pre-approval process you go through in order to get into a treatment center.

They kicked me out in 27 hours because of my body size and they told me they weren’t going to cover a thing. I was just told I needed to leave my job. I was living in Arizona, but told that I needed to go to California for a treatment center. And so I had uprooted my entire life to go to this treatment center and then was kicked out in 27 hours.

And told I was going to need to pay for those 27 hours of residential treatment to hit my, like, deductible, like, what? So, I had some family members who supported me, thankfully, in fighting my insurance and having to prove to them why they needed to allow me to even get into care.

And then, talking about the actual treatment that people living in larger bodies receive in treatment centers that are supposed to be places that are safe, it-it’s just anti-fatness, which is rooted in anti-blackness and racism. It is so pervasive. It is so deeply embedded into our society.

It’s like the air we breathe, we don’t even realize it. We are just so programmed and conditioned to think in anti-fat ways, and it impacts us and those who are trying to receive treatment across the board in such profound ways. Did that answer your question?

Sedley: Absolutely, and I mean, your point about being kicked out of residential treatment in 27 hours because insurance decided that your body size didn’t qualify you for that. I, I even think about my time in residential treatment, I am in a, a, smaller body. I have typical anorexia that I’m in recovery for. So I was that diagnostic criteria met of being underweight. I was in residential treatment for five weeks. I was meant to stay a lot longer, but as I started to gain even the smallest amount of weight, insurance said, “Oh, okay. That means that you’re on an upward trajectory. So if you just keep gaining the weight, which you will without support after five weeks, then you’re, you’re good to go. Bye.” And so, obviously, much less extreme than your case, but you know, there’s, there’s this endless cycle at play that we’re both kind of referring to, this societal stigma feeding medical stigma, feeding societal stigma, and it just keeps going.

We, we know that eating disorders in people with larger bodies are largely neglected. We could do a whole series just unpacking the rise and upholding of thinness is the ideal and, and fatness is undesirable. But from your perspective as both an activist and someone in recovery, how do you still see these stigmas being upheld in 2024? There’s so much discourse about, um, you know, body positivity, body acceptance, and in a lot of ways, maybe we’re moving toward good, but how do you see those stigmas still being upheld?

Maxwell:

It’s interesting because there was a massive rise between I believe it was 2019 and 2023 of the quote unquote “body positive” trending on social media and we’re starting to see a big shift from that right now actually with these weight loss drugs, Ozempic, Wegovy, GLP-1, or G. Did I say that incorrectly? GLP or GP? Whatever, those medications on the market, um, and like heroin-chic is back in, and.

So, where do we, where do we still see these stigmas? I see them everywhere. Um, but I also believe that there really is great work being done. I think one of the main issues that we’re having, The Washington Post put out an article this last week about how big food is making money off of anti-diet messaging and getting these quote, unquote, “wild and nutty anti-diet dietitians” on board to try to get people to eat these horrible foods.

And and we also have like, the president and CEO of Weight Watchers coming out a few months ago saying that she believes that Ozempec, Wegovy, these weight loss medications are going to be the quote, “end of diet culture,” which is hysterical in and of itself.

So like, people are picking up on. Oh, like this isn’t good. Like, Oh, people are calling us out on the fact that 95 to 98 percent of all diets don’t work. People are calling us on our bluff now. And so they’re coming up with, it feels like a lot of strategies to combat that. And I think additionally, when folks are realizing that dieting doesn’t work, realizing that they have a disordered relationship with food, whether it’s a clinical eating disorder or simply disordered eating, and they’re starting to make these shifts and they’re finding people to follow on social media, dieticians, doctors, activists, whatever, talking about making peace with food in our bodies and things like that,

if they’re getting that messaging and they’re hearing it with like body positivity is the goal, that is not sustainable at all. Body positivity has never been the goal. Um, it’s body liberation. And if we look at like the Health at Every Size movement, which has been around since the 1960s, it has always been to liberate people living in larger bodies to be able to receive adequate access to health care, to be able to walk outside of our house and be able to go into public places and have seating that accommodates our bodies, to be able to, access the things that our thin counterparts do.

So, I think that, where do I still see these stigmas being upheld? I see them in all of our different places. I see it everywhere. And I see people fighting actively, like New York City, less than a year ago passed another ban on weight stigma, it’s illegal to discriminate based on weight in New York City now. And there are two states and a handful of cities across the U.S. who have, you know, taken this legislation. So it’s just, I don’t know. Um, I feel like I’m becoming a little tangential at this point, Jackie, cause I can go on. But I think the main point there is that it was trending and there still is a big movement for sure.

But I think that a lot of folks who are like, “Wait, I can’t do this. I’m not, this isn’t working for me. Because the whole goal has been to just like be able to look in the mirror and be like, “Oh, I love my body.” But like, that’s not realistic. That’s not real life.

Sedley: Right, right. And for listeners out there, I know that we touched on these topics on the first call in show on Episode One of Nourished.

But if you want to pose these questions to someone that can speak much more broadly on it than I was able to in Episode One, or if you have any personal questions about the conversation we’re having for Sharon or myself, or broader questions about weight stigma and eating disorders, atypical anorexia, you can call 303-442-4242, or you can email dj@kgnu.org. Sharon, I’ve also seen a lot of discourse online about kind of exceptions to the rule of fatness being bad, how there’s certain scenarios where society gives someone quote unquote “permission” to be in a larger body. Over the past few years, it seems to be with models or influencers or musicians.

And it’s usually when those people who are, you know, usually pretty conventional, conventionally attractive otherwise, have outspokenly said that they’re done apologizing for their body size. And this is an inherently good thing, right? It diversifies the types of body shapes seen in mainstream media, and it exposes people to conversations that they may not otherwise be having.

But it seems like these people end up often still being defined by their body size. It’s, it’s a lot of, “this model is so brave for wearing a bathing suit, even though they’re fat” or, “wow, it must take so much courage to wear that outfit when you’re that famous and that fat.” Have you seen this as well?

Can you, can you speak on this a bit? I’m not sure if our listeners are quite as aware of this.

Maxwell: Yeah, absolutely, and I would, I would say that while it is something that models, influencers, musicians are experiencing, it’s something that just like the average everyday fat human walking through society is experiencing as well.

So I live in San Diego and, when I started wearing shorts living out here, I had never worn shorts for our group, only wearing skirts and dresses. I finally wore shorts in recovery, but they were like pretty much Bermuda shorts and no one made comments about that.

But once I finally wore a pair of shorts that was a little bit shorter, um, I got comments from random strangers who don’t know me or a thing about me, about how brave I was for, or like, I think they use the word, uh, how I had so much confidence. That’s what it was. “You’re so confident.” Why? Because I’m wearing shorts?

Like it’s hot outside. Doesn’t everyone want to be wearing shorts right now? Like it’s the middle of summer. But the thing is, is that there’s this image, right? So media has given us for so long, there are very, very, very few, you’ll be hard pressed to think of more than maybe two or three shows or movies, maybe five, I don’t know, where there’s a fat protagonist where their story isn’t just a redemption line by making themselves smaller, right?

So when you look at media ever since we were young and seeing villains on Disney being fat people like Ursula, right? Or the comedic side relief is a fat person. Or even if you look at shows like “Friends” and Monica and her whole redemptive storyline is that she’s no longer fat Monica, and you see fat Monica in a fat suit, and every single time she’s in a fat suit she’s got like a donut in her hand as if that is the personality of a fat individual, right? So then if you see someone who’s walking around and they, they always hate themselves. They can’t ever find someone who loves them. They’re slobs. They’re foolish. They do these idiotic things., And so when you see a fat person doing something that doesn’t fit that mold,

it’s like, “Wait! But how do you defy everything I know about fat people?” Right? And so when, when you’re also talking about models, influencers, musicians, I can think of like Lizzo and how many people have just, just, I mean ragged on her because of her body size. I want to see you get up on a stage, dance in heels, play that flute, and sing a song. Like, are you kidding me right now? But because she’s fat, that discredits her. Why? Like, that’s actually a reflection of the individual who is making the statement of “you’re, you’re so brave. You’re so confident.” It’s the fat person should start here living their life.

You know, and, and I’m on a mission to help fat people learn how to live here right now in the bodies they have. And, to celebrate that, like finding joy, fat joy, celebrating it in our bodies right here, right now. And the other people have a lot of things to reflect on. And we have a lot of healing and grief to work through as we continue to live in the bodies that we do in this society.

Sedley: You are listening KGNU FM 88.5 Boulder, KGNU 1390 Denver. You’re listening to Episode Three of my, Jackie Sedley, limited series Nourished, talking about eating disorders and unpacking the biases we have, as well as bringing these conversations into the media fold. I’m talking with Sharon Maxwell. Sharon, I was scrolling through your Instagram. You do a lot of activism, fat activism really promoting a lot of what we’re talking about right now, um, promoting education, unpacking a lot of biases and stigma as well. And something that I noticed that maybe listeners want to call in and talk about is, you have a shirt that you’ve made that says, “Fat is not a bad word,” and I would really, really love to dive into that, because I think, if any listeners want to call in and speak on this, 303-442-4242, they can, but I feel like the word “fat” has such a negative connotation to it that people don’t like to use it. You can see them try to either work their way around it and find a word that’s synonymous, or kind of reel back and cringe a little when someone describes themselves that way or look with pity. So talk to me a bit about about the word fat, and what that means to you, and, and why you are so adamant that that’s not a bad word.

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