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“What’s wrong with me?” Each episode of this documentary series begins as a medical mystery. But once you peel back the layers, more questions emerge.
27 May 2020 • 26 mins
ALLISON BEHRINGER: I’m Allison Behringer and this is Bodies, a podcast about people solving the mysteries of their bodies. This is the last episode of season two, and I’ve been thinking about how one of the common injustices in many of the stories this season is how the medical establishment and a lot of big structures in our society want us to be one thing. But we are many things, and that can be lonely in a world that doesn’t make space for complexity. Bodies is about illuminating every one of those complex layers. And sitting in the chaos of our inner worlds. Not to fix the messiness, but to examine it and honor it. Today we’re doing something new. We’re featuring a rising independent producer named Nico Wisler. This is Nico’s story, and it’s about that complexity. It took Nico a long time to realize they could be many things at once. It’s a tale of two mysteries that become one. Here’s Nico: NICO WISLER: In the spring of 2014, I was 23 years old. I had just moved to San Francisco for my first real job. Things were good. And then, all of a sudden, I stopped eating. I became obsessed with counting calories. I didn’t let myself eat more than 5 or 600 a day. A banana for breakfast, a salad for lunch, steamed broccoli for dinner. If I had a meal that felt unhealthy, I would make myself throw up afterwards. I wasn’t sure why I wasn’t letting myself eat. It wasn’t that I wanted to look different. It was more like I wanted my body to feel different. I wanted parts of my body to disappear. When I pulled on my jeans, I did it quickly, trying to avoid touching the curve of my hips. In the shower, when I ran the wash cloth over my body, I tried to turn my brain off when I cleaned my chest. But this compulsion to count calories didn’t line up with the identity I had built for myself. Most weekends, my friends and I went for bike rides outside the city. It felt rad to ride as part of an all-women crew. My friend had a jersey that said blue skies, big thighs. One day, we went out for a long, hilly ride. We stopped halfway for a snack. My friends got sandwiches and smoothies and I ordered a small kale salad. Before my friends could say anything, I lied, and told them that I had a really big breakfast I was worried about my friends finding out that I wasn’t eating. I was worried that they would tell me I knew better. I did know better. I minored in gender studies! I was the Vagina Monologues 4 times! I didn’t even date men! I knew that diet culture was bullshit. I knew that my worth wasn’t determined by my weight. I felt too feminist, and too queer, to have an eating disorder. The final climb back up to the golden gate bridge is a windy, steep, three mile hill. I’ve fallen way behind my friends. I’m starting to really slow down. The hill is getting steeper.I feel light headed and nauseous. I tilt over to the side. And because my shoes are clipped in, I fall over. I pull my bike to the side of the road. I sit down. And I cry. I feel so stupid. Just like, this is ridiculous, why am I doing this? I walked my bike up the rest of the hill. Later that year, I was in a bike accident. I don't remember the fall, or the ambulance. The first thing I remember is waking up in the hospital. The doctor told me they assumed it was a hit and run. He told me someone had found me unconscious on the side of the road and called 9-1-1. But the first thing I thought was, “what did I eat for breakfast?” Had I passed out on my ride? Later that day, I went home to recover. And at the end of the week, I took a short walk down to the lake. I sat still on the grass, and dug my fingers into the earth. I could have died. I still had a nagging fear that the accident was my fault. And even if it wasn’t, my body was in bad shape. I hadn’t gotten my period in months. I had acid reflux, from all the puking. I felt fragile. I decided I needed to get help. I made an appointment with a therapist, who specialized in eating disorders. But my sessions with her always felt flat. She would sort of vaguely talk to me about beauty standards. She asked me what kinds of shows I watched and magazines I read. At the end of one session, after a long stretch of silence, she cleared her throat. She told me, “I want you to consider that the problem is not your body. The problem is how you’ve been taught to see your body.” I stayed silent until it was time to go. I thought about what she had said on my way home. I felt like there was something more complicated going on. I didn’t think I wanted that idealized female body, but I couldn’t articulate the kind of body I did want. During the time I was in therapy, I did gradually start eating more. But I think it had less to do with therapy, and more to do with guilt I still felt about the bike accident, and the damage I was doing to myself. I ate kind of as if it was a chore. But the underlying discomfort I felt in my body was only getting worse. I felt it when I got dressed — all my clothes felt wrong. It wasn’t so much the clothes — it was my body in the clothes. When I put on a button down, I hated the way it tented over my chest. I bought a pack of Hanes white t-shirts, but those never fit quite right either. Figuring out my sexuality had been — not easy, but more straightforward. When I came out as queer in college, it felt obvious. I had a friend, and then all of a sudden we were holding hands, and falling asleep in each other’s dorm room beds and finally, kissing. But, my experience of my gender wasn’t tied to other people in the same way — I was trying to figure it out on my own. Until I met up with my friend Jamie for a drink. We hadn’t seen each other in over a year, and in that time they had started to transition. Jamie wore mostly plain white t-shirts like I did. But now theirs’ fit them flat against their chest, so that they didn’t have to tug at it all the time. Sitting next to them, I felt like the awkward younger sibling, trying to mirror them. I leaned over the bar, elbows wide, just like they did. I became aware of my voice, and tried to lower it an octave to match theirs. Jamie told me about their transition. Their voice cracked, and they joked about how starting testosterone was making them go through puberty all over again. “Look at all my pimples!” they said. I laughed. I didn’t want the pimples, but I did want the other thing they had — the ease they seemed to carry themself with. Jamie was somewhere else in this gender universe. And I realized, maybe so was I. I walked home. I was just buzzed enough to feel a little bit confident. When I walked in, my housemates were all in the living room. I stood in the middle and asked — Can you start using they/them pronouns for me? Only in the house? I want to see how it sounds and try it out. Everyone was like, sure! My housemate Devin gave me a high five. I went down the hall to my room, and laid on my bed feeling my heart pound. I turned the new pronoun over and over in my head. --- A few months after I started going by they/them pronouns, I decided to buy a binder. Putting it on was not easy. It’s kinda like a sports bra and a straightjacket combined. But, when I looked in the mirror, for the first time, my chest was flat. I turned to one side, flat, and then the other. Flat. I straightened my posture. Still flat. At this point, I was the heaviest I had been in a year. I loved how strong I felt on my long bike rides. But I still wished that the parts of my body that felt soft, and out of place could disappear. Now, with the binder on, I realized that this was the thing I had been going for. THIS was the body that I couldn’t picture back in the therapist office. When I went out, I’d just throw on my binder and a t-shirt. Then, I could play this idealized version of myself — this cool, androgynous babe, I walked with my shoulders back. I dug into greasy piles of tater-tot nachos. There was only one problem with wearing the binder: it hurt. It cut into my ribs, it felt like someone was kneeling on the space between my shoulderblades. I needed to take breaks. I’d to go into the restroom and take my binder off. It was in one of these moments, sitting topless, in a bathroom stall, that I first imagined getting rid of my breasts altogether. Most of the time, the first step to getting top surgery — or any gender-affirming surgery — is to meet with a mental health provider. Essentially, the provider needs to “diagnose” you as trans before you can alter your body. Sometimes, if you’ve had another physical or mental health issue, like an eating disorder, they need to make sure it’s resolved before you can have surgery. This is specific to trans people. Cis people don’t need to meet with a therapist before undergoing a breast reduction or augmentation, or any other type of plastic surgery. I made an appointment at the gender clinic. At the end of the session, the provider gave me the gender dysphoria diagnosis — which the DSM defines as conflict between a person's assigned gender and the gender with which they identify. He scheduled me for a consultation with a surgeon. But I never ended up going. I had put my body through hell with my eating disorder, and I couldn’t bring myself to do something that felt like more damage. Also, I had a small, secret fear that top surgery wasn’t actually something I needed to affirm my gender but instead was a sick desire that my eating disorder was tricking me into. So I just tried to do the work of accepting my body as it was. --- Two years pass. It’s 2018. I eat breakfast sandwiches without counting calories. I put my pronouns at the end of my email. I start going by a new name. But, unless I’m wearing my binder, my body still feels wrong somehow. And it’s too painful to wear all the time. I know the solution to my gender dysphoria isn’t to restrict food. I’m just not sure what the solution is. And then, I interviewed a psychologist named Sand Chang. Dr. Chang is also non-binary, and also in recovery from an eating disorder. They started their career in trans health, and one thing they noticed right away was that a huge number of their trans patients were also struggling with their relationships to food. And at the time, there was no research that supported, or explained what Dr. Chang was seeing. I called them on the phone. Here’s Dr. Chang: SAND: All of eating disorders’ treatment has these embedded biases about who is most likely to have an eating disorder. It's typically seen as, you know, the stereotype white, cis, straight women. NICO: It wasn't until 2015 that a study about eating disorder prevalence asked participants whether they identified as cis or transgender. The study found that 2 percent of cis women and less than 1 percent of cisgender men had been diagnosed with eating disorders — this is on par with eating disorder rates in other studies. But for trans participants — they found that 16 percent reported that they had been diagnosed with an eating disorder. That’s 8 times the rate of cis women. One possible explanation is that behaviors like restricting food, or purging, could be a way for someone to alter their body to be more in line with their gender identity. Also, trans people often face barriers to accessing healthcare, so eating may feel like one of the only aspects of their body they can control. But we don’t know for sure. Because even though this study came out nearly 5 years ago, there hasn’t been any followup research that looks into why these rates are so much higher. And it’s likely that the actual percentage is much higher than 16 percent. SAND: I mean, there's already so much shame that I think is inherent in having an eating disorder regardless of who you are. But for some people who don't fit that dominant culture stereotype, it's really easy to say, well, that doesn't apply to me. It might be a protection, a way that someone might be able to stay in denial like, oh, that's not me. NICO: Sound familiar? That stereotype has made its way into every aspect of our culture. I believed in it. My therapist believed in it. And so many trans people haven’t been able to get the help they need because of it. And when trans people do access treatment, it’s treatment that’s based on this very limited mainstream research. So it’s not surprising when Dr. Chang tells me that study after study shows that traditional eating disorder treatment doesn’t actually help trans people get better. And this can be a huge barrier for trans people who are trying to access gender affirming surgery. That’s because, according to the World Professional Association for Transgender Health guidelines, if a trans person has a mental health issue — like an eating disorder— they need to make sure that it’s quote “reasonably well controlled” before they can get the approval to have surgery. In some cases, there’s a really fair medical rationale to this: providers want to make sure that a patient is physically and mentally fit to undergo surgery. But for most people, this is just another form of gatekeeping. This is systemic transphobia. Because embedded in this policy is this idea that if you fix the eating disorder maybe the gender dysphoria will go away. As if gender dysphoria is just an ugly side effect of some deeper pathology. And then Dr. Chang told me about a 2015 study that offers strong evidence that this policy isn’t in the best interest of patients. The study found that when trans people with eating disorder symptoms were able to undergo gender affirming surgery, their symptoms were reduced. Essentially, surgery could be a successful treatment for eating disorders. This didn’t make sense to me. I had been doing so much work to accept my body as it was, because I thought that was the thing that would mean I was finally “better.” SAND: Acceptance doesn't have to mean complacence or inaction. Sometimes we need to accept that we need to take action and make changes, and sometimes that means needing gender affirming, medical interventions to feel at home in our bodies. NICO: After I hung up the call, I sat at my desk for a long time. Things with food felt pretty much resolved. But the underlying discomfort, the feeling that my body still wasn’t “right,” somehow — that had never gone away. Dr. Chang’s words felt like permission to reconsider top surgery. Maybe surgery wasn’t “damage.” It was still a hard decision. I had to work through a lot of grief and fear. And this piece about acceptance felt tricky. It had been true that I wasn’t after the idealized feminine body type. But what I wanted for my body came from somewhere — I was worried that I had escaped beauty standards for women, only to be caught up in beauty standards for androgynous people: thin, white, devoid of curves, or softness. I wished I didn’t have to make the decision at all — that I lived in a world where my gender couldn’t be assumed because of my body parts. But deep down, I knew no amount of mental work could get me there. And I thought, maybe, it was time to give myself a break from that kind of work. I booked the surgery for March 2020. At the hospital, on the day of my surgery, a nurse brought me back to a room. My surgeon came in. She used a sharpie to mark where my incision would be, and where my nipples would go. I looked down, trying to imagine what my new chest would look like. “Are you ready?” the nurse asked. Yeah. I was ready. That was almost two months ago. I was my surgeon’s last patient before COVID-19 hit my city. I’ve spent my entire recovery at home. When I wake up, I put my scar cream on. I rub the cream along each incision, starting at my sternum and ending at my armpit. My scars are a little bit lopsided, just like my breasts used to be. Then, I pull on a pair of briefs, and make myself breakfast. On weekend mornings, I move slow. The sun comes in through my kitchen window and sometimes, if I stand in just the right spot, I can feel the warmth spread across my chest. I pour coffee. I toast a bagel. I spread cream cheese on. Then add a fried egg, pickled onions, hot sauce and arugula. It’s a mess. I feel at ease. For so long, I had felt far outside of my body. Now, I’m here. It’s not perfect. Living in any body is complicated. There are still things I might choose to change, and things I’ll choose to make peace with. But whatever the road ahead, I trust that my body and I are going down it together. ALLISON: Thank you, Nico, for telling your story. -- ALLISON: We live in a world where the dominant narrative about our bodies isn’t always the true one. We’re always gonna be fighting against structures in our society that try to restrain us and mistreat us. And in this collective struggle, I think that one of the most effective tools we have is our own stories. Because when you share your health experience with a friend, or ask your mom about hers and listen,we generate a ripple effect of sound, a reverberation that has the power to shake the foundations of harmful institutions and challenge old ways of thinking. In doing so, we present, again and again, our truth, in pursuit of a better world. To listen to more of Nico’s work, check out the podcast Queer the Table. It’s hosted by Nico and it’s about queer identity and food. If you want to hear more stories about eating disorders and the intersection with gender, I recommend a brand new podcast called Consumedxx, by independent producer Spivey Knapik. While this is our last episode this season — we have one more collaboration in the works: To kick off Pride month, Bodies is doing a special project with TheBody.com. Our associate producer, Hannah Harris Green, is writing an article that explores the way the medical system ignores people outside the gender binary. Stay tuned for that digital story in early June. We’ll share links to all of this on social media and on our website, KCRW.com/bodies. If listening to Bodies has moved you, educated you or resonated with you, please write us a review on Apple Podcasts. This will help other people find this show. I also wanna invite you to join the Bodies Facebook Group. Nothing is off the table, and everyone is welcome. It’s a place where you can share your reactions to episodes, post articles, ask for doctor recommendations, or just find support for a health challenge you’re going through. You can find a link to the Bodies facebook group in the show notes OR by going to KCRW.com/bodies. From the very beginning, I saw Bodies not just as a podcast but as a community where people are sharing stories and building collective knowledge about our health, together. And so, I’m really grateful to all of you: This is not easy work. Thank you to the people who have shared their stories and expertise — not just the voices that you’ve heard on this podcast, but all the people that we spoke to over the course of our reporting. I don’t know exactly what’s next for Bodies, but I would love to hear your thoughts. Stay in touch: Find us on Twitter and Instagram at @bodiespodcast. You can follow me on Twitter @albtweetin. and on instagram @alb1919Or you can email me: firstname.lastname@example.orgYou can also join our Facebook group. I’m here and I’m always listening. RESOURCES Bodies Facebook GroupQueer the Table podcast, hosted by Nico Wisler Consumedxx podcast, hosted by Spivey Knapik Dr. Sand Chang Trans Eating Disorders Are All But Ignored by Medical Community, The AdvocateGender Identity, Sexual Orientation, and Eating-Related Pathology in a National Sample of College Students (Elizabeth W. Diemer, 2015)Gender confirming medical interventions and eating disorder symptoms among transgender individuals (R.J. Testa, 2015)World Professional Association for Transgender Health Standards for Care