The nuances of eating disorder treatment: A lived experience perspective
This is a tough blog to write. But I feel it is a topic that many people can relate to and have experienced. I don’t mean to be insensitive or hurtful to providers or the treatment industry, as I am grateful to my providers for all the care they have offered, but it is my opinion that often treatment can cause more harm than good. It’s a fine line, because treatment can save lives and often treatment is medically necessary to keep sufferers alive. I experienced this. Every time I went to treatment, medically I was so compromised I needed somewhere safe and contained to recoup. I was super sick and needed support to become physically stable. So, in many ways, treatment kept me alive. And I’m grateful for that. I’m also grateful for having the resources to access treatment. Treatment put my family in massive debt, but I always had access to it if I needed it. That said, many of the tactics employed to treat me were abusive, coercive, and traumatic. This is a plea for the treatment industry to do better, to treat clients with the respect they deserve, and to value lived experience.
It took me six years of struggling with my eating disorder before I sought help. I started treatment back in 2010 and was in and out of higher level of care for over a decade. A lot of work has been done since then to change how providers approach clients. Dialogues about the value of lived experience and the harm treatment centers cause are happening in the eating disorder community. Going through it, I didn’t know anything else, any other way of handling my care, so I didn’t realize how much harm really was done until I started recovering.
Again, it’s nuanced, right, because clients are often cognitively compromised, hijacked by the eating disorder’s wishes, so clients are often not able to make rational decisions for themselves. My providers dictated the course of my treatment because I was so sick. I had very little voice about what was best for me. The unequal power dynamic was very real. I operated under the assumption that my providers could drop me or send me to treatment at any moment, and I routinely received these threats. Many of my half-hearted recovery attempts were done out of fear of those things happening. And those things did happen. I often was given ultimatums about going to treatment or losing my treatment team and one time when I was very sick and unmotivated to do anything to help myself, I did lose my treatment team. I know others have experienced this too and often feel abandoned by people who they trust the most. But you must look at it from the providers’ standpoint too. I know for me, my providers went above and beyond to get me help, routinely putting more work into my recovery than I did and dropping me was a decision they didn’t take lightly. I have to say though, it was a fair move on their part, because I was a total liability for my team to keep seeing me and call it therapy when I wasn’t doing any of the work. It caused harm, but it was the right move.
Other things that caused harm include being put on a treatment contract as well as stepping on the scale and having that number determine my treatment. Only one treatment center put me on a contract. I was having a hard time completing meals, going from eating very little to eating a treatment meal plan is incredibly difficult, and it looked like I was not engaging with treatment. I’m sure to get insurance to agree to cover my stay, my team was under pressure to get me to comply and do better. So maybe the real culprit to blame is the insurance company, but instead of finding a way to help me eat the meals, offering compassionate support, and listening to my feelings and struggles, I was threatened with losing support. I ate then in fear of repercussions of failing to do so. Acting in fear rather than through internally motivated behaviors is not conducive to long term recovery. I looked compliant on paper, which is what insurance wants to see, but that treatment stay did not help me find the motivation to recover. If anything, it turned me against it.
Scale trauma, as my former recovery coach calls it, is a real thing. For decades, I had to step on the scale weekly, sometime multiple times a week, and daily while in treatment. Just the act of stepping on the scale causes trauma. I would dread going to sessions knowing I had to be weighed and that the number would dictate my entire session. If the number went up, we could talk about real life things, if the number went down, I would receive a lecture on the importance of eating. In treatment, which direction the number went would determine what privileges you would have and whether any would be taken away. Again, punishing you for things not totally in your control. I was either good or bad for the week in sessions depending on my weight. It’s nuanced, because weight restoration and the number are an important and necessary part of recovery treatment. I would not be where I am today without the weight restoration. But one of the best things I did for myself regarding my treatment was asking to no longer get weighed at sessions. I only had my doctor weigh me, allowing my sessions to be free of the weight of the number (pun intended). I separated myself and my treatment from my weight, focused on other aspects of recovery, and I started to make real progress.
In 2021, I spoke up about what I felt was best for me for the first time in all my treatment. My team thought treatment was necessary, but after my experiences with treatment, always relapsing after discharge, I knew treatment was not the right path for me if I wanted real recovery. My team pushed back, but I held firm, and eventually, they agreed to me working with a coach rather than going into formal treatment. It proved to be the right move. I feel I would not be where I am today had I gone to treatment at that moment in time.
More treatment isn’t always the right move when it comes to recovery. I had been in and out of treatment for over a decade and never could sustain the progress made there. I eventually became highly motivated and really focused on my outpatient support. Increasing sessions, adding support groups, adding a mentor and/or coach, was all necessary, but it allowed me to recover without disrupting my life. Sometimes treatment is necessary when you cannot put in the work for yourself, it can get you through hard times. But once motivated and highly determined to recover, staying outpatient was key to my success.
I spoke up again in 2022 when I decided it would be best for me to change dietitians. I had worked with the same dietitian for 12 years and I was just not making progress. She tended to focus on what I was not doing well, having me send weekly emails tallying the number of exchanges I missed and listing all the behaviors I engaged in. We rarely celebrated successes, focusing instead on what I needed to improve. Sessions were often punitive, making me drink a supplement or eat something if I did not have a good week. I learned to dread sessions. It took me a long time to commit to changing dietitians, because I had a longstanding relationship with this person, and I knew she cared about me. But once I finally committed, I made much progress with the new dietitian. She took the focus off weight restoration and focused instead on building quality of life. She put me in charge of my treatment, allowing me to set my own goals and determine what I was ready to work on. The client-centered, compassionate approach made all the difference. It’s not surprising that my recovery anniversary coincides with switching dietitians. I try to adopt this approach with my own coaching.
These examples are why it’s so important to access your authentic self and voice, which is often hard when your life is consumed with an eating disorder. I think the shift happened for me when I started to find internal motivation and I listened to myself about what would be most helpful to recover. I wasn’t doing recovery to please my providers but rather to make myself feel better. I learned to trust myself, no longer having the eating disorder drive the bus, and listened to the recovery-oriented part of me that wanted to get better, often called the healthy self. Uncovering your healthy self and allowing it to lead decisions is key for recovery.
Ultimately, I ended up recovering all outpatient. That said, I know people who have said treatment was the start of their recovery journey. Honestly, when I was in treatment, I wasn’t willing to do the work beyond enough to get out of treatment. Recovery takes continually doing the hard work, multiple times a day, going against everything that feels normal and right to your eating disorder. It’s doing a lot of opposite action to what you fear most, eating anyway despite the constant fullness you feel, and always doing the next right thing. I wasn’t able to recover until I was ready, but maybe if treatment had taken a more compassionate approach, I might have sustained progress longer. Each time I was in treatment, I couldn’t wait to get out and go back to what I was doing before treatment. Treatment, therefore, just ended up being a band-aid for a much larger wound.
All this is to say, treatment can cause harm, I know I have trauma from my experiences, and I’m so grateful I likely will never go back to treatment, but the discussion is incredibly nuanced. I was not the easiest client to work with. When I was sick, I was extremely resistant and unmotivated to help myself. I know my providers did everything they thought could help, often going above and beyond to seek support for my case. I know my providers cared deeply for me and held hope for me when I didn’t have hope for myself. Could I have gotten better sooner had I had client-centered care all along? Maybe, maybe not. Again, for a long time, I wasn’t ready to recover. I had to feel recovery was my only option. Like my life depended on it and in many ways, I reached a point in my life where it really did.
I just wish treatment could help even those who are having a hard time using their resources. Partner with them for their care, and empower them to want to recover, rather than offer threats and punishment for struggling. Rather than viewing clients as challenging, manipulative, and liars, ask where the behavior is coming from and what feelings are coming up. Often, clients are scared. They are being asked to do their worst fears. Have some compassion for how hard the thing is they are doing. Don’t give ultimatums and threats. Those don’t motivate. Remember clients are human and deserve basic rights.
I needed to write all this out to process my own experiences, as it is something I don’t talk about often, but I hope others who have had similar struggles can relate and take comfort that someone out there gets it. You are not alone in your struggles. Also, know recovery is possible for everyone. Just because treatment didn’t work doesn’t mean recovery is impossible. You might just have to do something different. I recovered all outpatient. It took much longer but I feel doing it for myself offered a more sustainable, long-lasting recovery. That said, I had to be motivated to do the work. I also had a coach and having someone who understood what I was going through with me every step of the way made a difference.
Treatment and providers have changed a lot in the last 15 years. I think they are realizing where tactics are not helpful and are looking for more ways to do better. Coaches are showing the real value of lived experience. I know my experiences with my own eating disorder make me more understanding, compassionate, and able to offer better advice as a coach because I know first-hand what can help.
If you are struggling, never give up. You never know what treatment, provider, or modality will be helpful. Always be willing to try. Go into therapy with an open mind. If you feel a certain way about how treatment can be helpful or harmful, I hope this discussion helped you see both sides. This is an incredibly delicate conversation. Everyone’s experiences are valid. So, if a client says treatment won’t be helpful and they are speaking from their authentic self, believe them. They know themselves best. Empower them to help themselves. That’s key for lasting recovery. themselves. That’s key for lasting recovery.