Just shy of turning 29, I was living with my then-partner, had been financially independent and employed full-time since I graduated college at 22, and was preparing to enroll in a PhD program that fall. In short (and pardon my French), I had my shit together. I was a full-fledged adult, and fiercely independent.
By 29, the hell of my teenage anorexia battle felt like someone else’s memories. In truth, I looked back and thought of it as a fluke, something that couldn’t, wouldn’t happen again.That dangerous attitude was surely part of why I didn’t notice it creeping back in, why I brushed off behaviors that now seem like flashing neon signs.
I was on the phone with my mother in late summer when I began to timidly say, “I think this has taken hold again.” She couldn’t reconcile my maturity, my insight, with the notion I had lost control. She said, “But you’re talking about it so much differently now. You’re gonna be OK, you know so much!” I knew the maturity and insight had their limits. I admitted to my father I wasn’t doing well, but I assured him when the stakes were high, I’d get it under control. Surely, I couldn’t keep up with my eating disorder and the first year of a PhD program. It would be the motivation I needed to right the ship.
It turns out you can, albeit temporarily, keep up with a PhD program and anorexia, but it’s overtime agony. The relapse gathered speed as it sped downhill and things got bad, quickly. Midway through the semester, after two months of tearful phone calls with my parents and Skype sessions with my therapist, after countless episodes of dizziness and panic, I admitted to myself and everyone else that I would not be able to right the ship on my own. I had no idea how I would make treatment work financially, and I was stubbornly clinging to my timeline, determined to fit treatment into winter break, neatly tuck recovery into those four weeks, and stay on course. I began to research treatment centers. I found one for adult women that looked idyllic, the website full of pictures of a cozy, inviting house in the woods. The language on the website was empathic. I imagined falling into the arms of recovery there, surrounded by warmth and encouragement. When the phone call came that they had negotiated a single case agreement with my insurance company, I cried with relief. I was full of shame sitting in my first year PhD courses, sure everyone could see that I was suffering from one of the disorders we were studying. I questioned the strength, independence, resilience I had prided myself on, not allowing myself to consider that these qualities were not mutually exclusive from my diagnosis. How could this have happened to me?
On December 15th, I emailed my advisor a copy of my master’s thesis proposal. I’m still not sure how I got through that semester, not sure how I wrote those papers when finding coherent thoughts felt like attempting to reach into a dense fog. Two days later, I loaded up my car and drove to the treatment center a few hours away, out of state. I was at once excited, relieved, panicked, and terrified. Unable to take care of myself, I was ready to be taken care of.
I had imagined warm greetings, staff who would do their best to allay my fears and make me feel at home. I pictured some sort of welcome ritual for new patients, being introduced to the others, integrated into the community.
Instead, with minimal greetings and certainly no smiles or warmth, two staff members took my bags, dumped out the contents, and began to go through them with gloved hands, setting aside my books to be checked, putting clothing items that referenced races or running in the no pile. I was taken to the nurse’s station for vitals. Someone dropped off a lunch tray and I nibbled at it and began to cry. The lead resident assistant on duty came by to pick it up, looked at it mostly full, and conveyed her skepticism and impatience, a hard-ass, tough love (with no perceptible love yet) attitude.
I saw the other residents move through the house, coming and going to meetings and activities. There were no introductions, there was no ceremony. I was inserted and left to integrate myself. When I went to the office to finalize the paperwork and payment, I wanted to bolt. The cozy, warm house in the woods I had pictured now felt like a dark, scary, and uninviting place. I was terrified I had made a big, big mistake.
I’d like to say this was just first day jitters, my anorexia’s fear overshadowing my sincere and earnest desire to get better. Indeed, an outsider looking in, one without lived experience, might chalk my reaction up entirely to my disorder. Instead, I think there was a sinking realization, a knowing. Recovering in this environment would be like trying to swim upstream. I needed the push into the water, but I was going to be fighting the current.
There were so many little traumas, so many things I did not anticipate, so many ways I struggled that I could not have foreseen. In the halls of that house, I felt two-dimensional. I was there for anorexia treatment, so intellectually I knew my anorexia would be the focus. But I had a full, robust life before the relapse, and anorexia was such a tiny sliver of my time on earth. On my first outing to a local restaurant, I was seated next to a resident advisor who was also a PhD student, a year ahead of me. I was so excited to learn this information and tried to engage her in conversation. I wanted to talk about my thesis and research. I was desperate to connect over something other than my eating disorder, to be seen as a three-dimensional person, to not be defined by my current struggle. She listened politely, eyes darting around, appropriately doing her job. But she was not interested in my studies, nor my thesis.
On another outing, we went bowling. I braced myself for the trip all morning. On their own, outings were always tough because of the spectacle. It was clear we were not a group of gal pals out enjoying our day. But, the resident assistant on duty that day was particularly notorious. She had her moments of humanity, but most of the time, she seemed to take pleasure in her power. She had that tough love, condescending approach that was pervasive, and I began to dread every shift she worked. She loved to enforce the rules, to tell us to sit down if she thought we’d been standing too long (because standing = trying to exercise). So, maybe you can imagine how bowling went. Almost all of us were on exercise restriction, so we were only allowed to stand up when it was our turn. In hindsight, I’m surprised they let me hold a ball that heavy. Though I could appreciate the intention behind the bowling trip, it was perhaps my darkest day in treatment. A group of sullen women under careful watch, one by one dutifully taking their turns, while families and friends around us jumped, cheered, and laughed.
Treatment was full of these little humiliations, the surrendering of basic privileges and trust you didn’t even realize you’d been taking for granted. It was a shock at the age of 29 to ask permission to use the bathroom, to try to go while someone stood in the open door. I grew weary of the constant suspicion, the questioning of every move, decision, or gesture. Once, early in treatment, I tried to take a knife, fork, and spoon with me to the table. A resident assistant stopped me and said, “What are your plans for those?” I looked down, looked back at her. “To eat with?” With no affect or humor, she said, “Choose two.” Another time, I sat writing in my journal, trying to process all the bubbling, difficult feelings of early recovery. As I wrote, my hand was resting on my belly just in the waistband of my sweatpants. I don’t know where I picked up this habit or when, but it’s a comfort thing, something I still do. A therapist walked by and said, “What is that?” and gestured towards my hand. Confused and not sure how this could be a problem, I said, “Resting my hand?”
Later, at an IOP facility, I was released from care due to an error I had no part in, because I lacked all credibility and power as a patient in early recovery. It was a new program, and you could tell it was still getting its bearings. Every night the program started with a weigh-in. The nurse at the time was friendly, but seemed a bit scattered and unprofessional, sharing personal anecdotes and stories, such as her theory that her sister had bipolar disorder. When she weighed us, she wrote our weights down on a slip of paper to enter into the computer later. Not exactly an ironclad system for accurate data entry. I was confused when I was called in to meet with the director, where I was accused of water loading. In my entire eating disorder history, I never once water-loaded. Quite the opposite, as a teen I engaged in behaviors to make my weight even lower for weigh-ins. I never would have water-loaded because it would’ve been too mentally overwhelming, particularly during IOP when I was still trying to cope with the substantial weight restoration that had already occurred. But, because I was a patient still early in recovery and struggling to get my footing, I had no credibility. I was told they would no longer serve me until I went to a higher level of care.
Here’s the thing: so many of the things I experienced in treatment I understand. I understand the necessity of bathroom restrictions, why everyone has to have them at first, even if they aren’t using those behaviors. I understand monitoring for behaviors and having rules to prevent those from happening. I understand that eating disorders can lead individuals to lie, manipulate, and hide. My issue is how providers balance the very real need for rules, restrictions, and monitoring with the reality that treatment is often humiliating, terrifying, difficult, and full of shame. Perhaps a hard ass, tough love attitude is helpful for some. But, it’s really really hard for me to imagine it’s helpful for most people with eating disorders. In my head was a constant drill sergeant, shouting orders and hurling criticisms. I berated myself for being sick, for not being sick enough, for eating, for not eating, for not meeting my impossibly high standards, for having those standards to begin with. I didn’t need another tough love voice in my ear. What I was desperately missing was compassion. Nurturing. Warmth. To be recognized as a three-dimensional person, not just the embodiment of my disorder.
Ultimately, I cobbled together recovery, but it was slow and painstaking. I didn’t do it the way anyone would ever recommend, myself included. I didn’t step down appropriately through the levels of care. I left residential at the start of the new year rather than pay another high deductible I could not afford treatment that felt almost unbearable. I strung together outpatient treatment, tried an ill-fated stint in IOP, and ultimately worked with a therapist who didn’t specialize in eating disorders. Though I would not recommend that path for anyone else, I found what I needed. This therapist zeroed in on my lack of self-compassion, the unabating, authoritarian drill sergeant in my head, and constantly pushed me to consider what it might be like to value myself. She talked to me like an adult, not a child. I was safe to be honest with her, and she was honest with me. Importantly, I knew she could see me, truly me, beyond my diagnosis. That relationship was a not-small part of why I made it through, why the color filled back into my life.
Residential treatment, and eating disorder treatment generally, is important and lifesaving. The point of this post is not to disparage it. I can’t imagine I was an ideal patient (a stubbornly independent know-it-all), and not every program or approach is going to work for every person. Some women in my program seemed to not be as bothered by the things that felt traumatic to me. But, as a researcher, I also know that treatment is not good enough yet. We know the most about treating adolescents, and considerably less about treating adults. Developmental stage and illness duration are two important pieces to the puzzle. And, as more and more research comes out on the role of self-compassion in the onset and maintenance of disordered eating, I think we need to be really mindful about how self-compassion should factor into treatment. Compassion doesn’t have to equate to enabling. Conversely, modeling it could be a scaffold towards recovery, helping people learn how to give compassion to themselves.
Thank you so much. What a valuable piece of information for people in the treatment field as well as living caregivers to use to help their patients and loved ones recover.
What a courageous and frightening battle. Thank you so much for sharing this. My adult daughter is also being brave and facing this disease again. This was so helpful….thank you 💕
My daughter has struggled for 15 years and is still struggling. She is 30 and will not go to treatment for the very reasons you wrote. She too has told me, the need is not to focus on the disorder but to be treated like an adult, like a human being and not a disease. She is looking for a therapist who will do what yours did but have yet to find one. Bless you for sharing all of that because it is exactly how
My daughter has felt.
I am so sorry she’s had to experience this. Though there is still stigma in the field about clinicians/researchers with lived experience, I am grateful for mine and how it informs my work. I will work hard to make treatment better for everyone, so that the people who need it most aren’t afraid to try it. I hope your daughter is able to find a compassionate provider; if there’s any way I can help, please let me know.
Thank you for writing this. I can totally relate. My eating disorder harasses and tortures me and the coldness and lack of empathy from staff made it more miserable than it should have been. The cliques, jealousy, and bullying by the fellow residents (all of them younger than me) made it unbearable. I left because struggling with anorexia in my head is bad enough, but to also be in an awful environment is intolerable.
I am so sorry to hear about your experiences. It makes me think how important these conversations are, how much we need to give voice to this. It’s just unacceptable. People who need treatment shouldn’t be afraid of accessing it. I hope you are able to find compassionate care. You didn’t choose this, and it is not your fault.
Genuinely, thank you so much for writing this piece. You put words to what I myself have also been through. I refuse to see ED treatment professionals due to the trauma and dehumanizing experiences they have put me through. I’ve found much better support through a trauma therapist. I literally have flashbacks of being back in treatment nearly every day. Instead of treatment helping me to reach recovery, treatment is something I find myself trying to recover from. So much of how eating disorders, especially in adult populations, needs to change. Our lived experiences and critiques of treatment need to start being heard instead of dismissed and discredited as the ramblings of the mentally ill. Thank you for being a voice. I hope those in positions of power and authority start to listen.
Thank you for replying. There is comfort in knowing I’m not alone. One of my goals as a researcher is to integrate the voices of those with lived experience into the work. I want to help make treatment better. So thank you for speaking up.