To Control, or Be Controlled? The Complexities of Care and Control in ED (Eating Disorder) Treatment

Author: Madeleine (Maddy) DeWelles, PhD candidate

I was lying on my belly beside my mom. It was just us, chatting on the bed. I was hot and sticky with sweat from the heavy air of an unseasonably warm May.

The mood in the room was light and airy, totally in contrast to the damp weather. We were chatting about my upcoming summer vacation. I was excited because I was about to start my first summer job. But, I was beginning to feel uncomfortable in my body. I loved these mini lasagnas my mom would pack me. Lunchtime was always the best. It meant I got to have those. But, it also meant my body was growing.

“Mom,” I said with a laugh. “Honestly, you have got to stop feeding me that lasagna. It’s so good, but I’m really starting to feel it”.

My mom didn’t say much. She just smiled and picked up a novel that was next to her. I stretched and rolled onto my back, stared at the ceiling for a minute or two, and decided I needed to weigh myself.

“I’m just gonna check it out. See where I’m at”, I thought to myself.

I weighed myself often. I did it at the doctor’s office. I did it privately at home. In my early teen years, weighing myself was a daily ritual. Every morning, I woke up and stepped on the scale. I covered the number with my toes. Then, I would reveal the number, inching my toes away from the screen that displayed the digits. I would obsess over 0.5 of a pound, and that number often haunted me throughout the day. If it was adequate (i.e. small enough), I was happy, but only momentarily. I needed to keep it that small, or lower. If it was too high, I was mad at myself. That number, every day, was part of my physical body and intangible thoughts.

That night was no different. I needed to check my weight.

I was not happy with the number. It went beyond my comfort level. It went beyond what I expected for myself and my body. It went beyond what I had tried to control. So, I needed to get back in control. I needed that number lower.

Just five pounds lower.

I took a deep breath and said a few “Oh, my Gods.” I figured I just needed to focus on getting through my grade nine exams, and then I’d celebrate with an ice cream bar. That summer, the summer before grade ten, changed my life. It is that summer that anorexia caught me. Even now, the summer of 2012 is that division line, splitting my life before anorexia and my life with it.

I kept the ice cream bar in the freezer the entire summer. I kept it in the freezer that entire year. And then, a whole year had past. I had lost more than just five pounds. That realization hit me on the very last day in July.

July 31, 2012. This is a day I will never forget. It was the day that I arrived at the hospital.

My arrival into the hospital was traumatic. I was supposed to begin a day-treatment program where I would be at the hospital for about 10 hours a day, six days a week. All of my meals would be set out for me, and eventually I could transition towards having home-cooked meals. I would have to “earn” all of that though. As if my eating disorder was something I was being punished for. In the hospital, they like to tell you that your eating disorder isn’t your fault.

They tell you that in therapy, too. It’s not your fault. And honestly, I understand that. I believe it, too. An eating disorder isn’t anyone’s fault. But when you’re alone in the hospital, “earning” various privileges like a walk outside or getting to close the door all the way when you pee, it feels a lot like you’re the one to blame. And if you don’t do what you’re told or gain what you should or lose or maintain an expected amount of weight, these “privileges” are taken away.

Despite all of these rewards and punishments, apparently, losing five pounds is totally okay. It’s no big deal. It’s normal. One of my therapists, my favourite one, told me this. At the time, it comforted me. I figured I could go through life wanting to lose five pounds, because this is totally okay and nothing bad will happen from it. But, something bad did happen to me.

I got anorexia. I had to go into the hospital.

“Maddy, you know, it’s normal to want to lose five pounds. Lots of people say that”.

Tears welled in my eyes and I sighed and laughed. I didn’t want my therapist to see me cry.

“I know, I know, Dana. You’re right”.

Dana smiled. She was sweet, and I liked her. I had met her about nine months prior to my current home – white, sterile walls and a bathroom that was always locked. She was my eating disorder therapist, and I began to see her after my teachers and guidance counsellors noticed my weight loss. I liked her. But I hated it here in the hospital. Even in the day treatment program where I got to go home at night, I hated that Dana got to go home to her family and cook something to eat. I hated knowing that I had to eat tilapia and rice on Fridays. I hated that she got to eat with no one watching her or measuring how much Boost she got. I hated that she got to eat with napkins, but I wasn’t allowed them. It was – and is – funny to me that the journey towards “food freedom” occurs with so much regulation, control, and confinement (Schott, 2022). Nothing was free on the food journey for me. I paid through empty milk cartons that nurses and staff members had to examine. I paid through having to chew through chicken gristle. I paid through sitting ten hours at a table while waiting for a fellow patient to drink her protein shake. In return, I didn’t have to show anyone my pee after using the bathroom. Seems pretty equal, don’t you think?

As I reflect on these experiences – which happened over ten years ago – and as I’ve learned about psychiatrization, medicalization, and institutionalization, these all appear and are linked to my experiences in eating disorder treatment. I think what gets me the most mad, however, is the irony of eating disorder treatments. Eating disorders control you too much, so then what? You are placed in a setting of total control, where your choices and access to food and bodily autonomy are completely stripped of you. And all of this is packaged and said to be in the name of food freedom, happiness, and recovery.

In the neoliberal society in which we live, work, and even play, expectations of self-improvement surround us. Constantly, we are told how to be better, do better, and live better.

In eating disorder recovery, there are expectations of how to “recover well” (Schott, 2022). If you gain, lose, or maintain a specific weight or stick to a meal plan, you’re doing well. But it’s all still controlled. When I was in treatment, I was told that I was out of control, or that my body and mind were out of control. But I was also in a suffocating and controlling environment. I think that, in order for medical institutions to make changes, one of the biggest but best first steps to take is to think about the society in which we live, and the huge and heavy sociocultural factors that make people want to have smaller and lighter bodies. Hospitals and treatment programs also, I think, need to come to terms with the contradictions of their care and how these institutions are controlling the people they often deem to be out-of-control.

If we come to terms with these broader realities, then I think eating disorder treatment can become much kinder and sensitive to how the body interacts with society and its various structures. In this way, I think we can infuse the social within the medical – or, we can reveal how so much of the medical, so much of the body, is deeply social. As Simon de Beauvoir (2012) writes, the body is not a thing, but it is a situation (p.46). Eating, eating disorders, and the diagnoses of eating as disordered are social. They are situations. And we can “treat” eating disorders, and indeed, all of those who eat (i.e. everyone) with more sensitivity and awareness to the complexity that is food, eating, and the body.

References

De Beauvoir, S. (2012). The Second Sex. Knopf. Schott, N. (2022). Pro-Ana/Mia Performance Ethnography: Remaking responses to psychiatric relations to “eating disorders”. [Doctoral dissertation, University of Toronto]. TSpace Dissertation Repository.

https://tspace.library.utoronto.ca/bitstream/1807/111059/4/Schott_Nicole_Danielle_202203_PhD_thesis.pdf

Bio

Madeleine (Maddy) DeWelles is a PhD candidate at the Ontario Institute for Studies inEducation (OISE/UT). Her research focus is disability studies and childhood studies, and she is interested in how Down syndrome is represented to adults and children before, at, and following the birth of a baby. Maddy is also very interested in representations of eating disorders, as well as understanding the social worlds of eating and constructions of “disorder”.

Institutional Affiliation: University of Toronto, Ontario Institute for Studies in Education