The “Sick Enough” Paradox in Eating Disorder Treatment

These were the exact parameters of my eating disorder treatment contract, as defined by my so-called “care team” when I was 20 years old. If I didn’t comply, they were going to drop me as a patient.

Outpatient Treatment Agreement
Jasmine Marshall
Last Update: 10/4/21

Current treatment expectations:

• • • Jasmine will complete a minimum of three meals per day including three food groups, as reviewed with [Dietician’s name].
    • Jasmine will log at least one meal or snack per day…
    • Jasmine will reduce movement to a maximum of 4 days per week…
    • Jasmine will take all psychiatric medications as prescribed.
    • Jasmine will maintain or gain weight. Any additional loss of weight will result in immediate referral to a higher level of care by treatment team.
    • Jasmine will attend 1 appointment with [Dietician’s name] and 1-2 appointments with [Therapist’s name] weekly.
    • Jasmine will attend appointments at campus health center as recommended by team members.
    • Jasmine will communicate honestly with all treatment team and family members, as well as herself, about how she is doing and what kind of support she needs.

Jasmine should show observable increased engagement with treatment by October 31, 2021, as evidenced by willingness to follow these parameters. If no noticeable improvement (as defined by successful ability and willingness to follow the above parameters) is observed by the treatment team, Jasmine will be recommended to pursue a higher level of care.

The above treatment agreement will be modified on an as-needed basis by the treatment team.

Having been a hard worker and a good student my entire life, I was always well-behaved and did what I was told. Treatment was no different. I had begun eating disorder treatment in May, just five months prior, determined to get an “A.” By October, they had already failed me.

Yet, there was only one thought on my mind after reading this ultimatum: I must lose more weight by October 31st. Why?

Those who subscribe to mainstream narratives surrounding eating disorders might say: “Well, of course; denial is the nature of the disorder. You don’t believe you have a problem, as it drives you to lose more and more weight, no matter the cost. It drives you to become sicker and sicker, yet convinces you that you are never ‘sick enough.’”

Perhaps. Or perhaps not.

I remember hearing once in a Ted Talk called “The Danger of a Single Story” that if you want to disempower someone, the easiest way to do it is to tell their story and start with, “secondly.”

Secondly, Jasmine has depression and anxiety disorders, said the doctor.

Secondly, Jasmine has an eating disorder, said the therapist.

Secondly, Jasmine is not complying with her treatment agreement, said the care team.

Secondly, a person with an eating disorder is always driven to become sicker because the nature of the disorder is to make you feel as though you are never ‘sick enough.’

But what came firstly? My eating disorder did not exist in isolation. The very act of calling it a “disorder” located the problem within me. By decontextualizing the circumstances – the traumas – from which my eating disorder arose, a single story had emerged. I was no longer the narrator of a story that was mine alone to tell; my voice had been usurped, and thus, I had been effectively disempowered.

Notice the wording of the treatment contract. Jasmine will, Jasmine will, Jasmine will… Notice how it was never “the treatment team will.” And in particular, notice the last line: The above treatment agreement will be modified on an as-needed basis by the treatment team. Not by Jasmine. By the treatment team. There was no collaborative effort in either the creation nor the execution of this contract. They had full control over the creation of it, while I was supposed to be fully in control of the execution.

There are two types of control: Control as in autonomy, and control as in responsibility. It is quite problematic that “control” and “control” are homonyms, especially when it is commonly said that “eating disorders are about control.” I had no say, no autonomy – no control – whatsoever, in my own treatment, yet I was burdened with nearly all of the responsibility-type control. If eating disorders are truly “about control” as some will say (which is, admittedly, itself a single story), then ironically, my eating disorder treatment replicated the very dynamics that led to my illness in the first place. Like I said before, five months in, and they had already failed me.

It may sound like five months is not a very long amount of time, and that’s because… it’s not. Especially not to complete, or even make significant progress in, something like eating disorder recovery. You may be wondering how long I’d had an eating disorder for, as duration of illness might somewhat correspond to duration of recovery. Perhaps if I had not been sick for very long, five months would seem more reasonable. So how long had I been struggling? Well, the answer to that question is a complicated one. Or at least, it depends who you ask…

[Doctor’s name], MD at 04/23/21 15:36

Subjective

CC: Eating disorder

HPI: 19 y.o. female presents today with her mother to discuss a possible eating disorder. The patient admits to episodes of bulimia (4-5 times over the past few months). She also admits to feeling guilty after eating a large meal. She exercises 1-3 hours/day by running and doing ballet. She has been to a therapist and she has been to her student health center at her school where lab work was done, including a normal magnesium level, a normal phosphate level [blah, blah, blah]… She states that her psychiatrist has recently retired and she has an appointment with a new psychiatrist next month. She and her mother both agree that she waffles back and forth on whether she has a problem with an eating disorder or not. Her mother is concerned that she does have an eating disorder. She denies using laxatives.

Objective

General: Thin female in no acute distress. Her weight is stable in our office.

To be completely clear, this “thin female” was in very acute distress, both during and after this appointment. Nor had her weight been “stable.” She was in very acute distress because her overly controlling mother still insisted on coming to doctor’s appointments with her as a 19-year-old adult, violating her boundaries and going against her wishes. She was in very acute distress because she was malnourished in ways that don’t always show up in lab work or BMI charts. She was in very acute distress because it is true that she felt guilty after eating a large meal, if you consider one roll of sushi to be a “large meal.”

She was in very acute distress because if the doctor who wrote this had been either listening, educated on eating disorders, or both, he would’ve realized that there had only been episodes of purging, not “bulimia,” which by definition involve purging preceded by bingeing. She was in very acute distress because a middle-aged man in a white lab coat holding a clipboard and a clicky pen was sitting across the room evaluating her body, assessing it for enoughness. She was in very acute distress because the doctor at the Student Health Center had diagnosed her with an eating disorder, but now this one didn’t seem to think she was sick enough to have one, so now she was confused.

Most of all, she was in very acute distress because she was being treated like a criminal on trial, even in this very write-up. She states. She admits. She denies.

“HPI” stands for History of Present Illness. It is defined as “a medical document that describes a patient’s current illness from the first sign to the present.” I had been trying to answer the question of when this all began, to give us more insight into the projected duration of my recovery. So, was this my first sign of illness?

If you ask me, I began developing an eating disorder when I was 11 years old, yet I was not formally diagnosed until age 19. And even then, there was disagreement among doctors about the legitimacy of my diagnosis, as we have seen. But for eight years, I was praised for my slimness, eating habits, exercising, and apparent “discipline” and “self-control”; essentially, I was socially rewarded for my undiagnosed eating disorder. My striving for “health” and moral virtue – despite detrimental effects on my actual health – was encouraged, until one day, I was pathologized for being just too good. I began treatment shortly thereafter – determined, once again, to strive for “goodness” – and five months later, the ultimatums began. As though five months was long enough to reverse now nine years of struggling.

Secondly, I was blamed for not adhering to a treatment plan that firstly, I’d had no agency in co-creating. Secondly, I was “failing” treatment, but firstly, their threats to terminate the therapeutic relationship when I needed help the most reenacted the very abandonment and betrayal traumas that had led to my development of an eating disorder. Secondly, “denial is the nature of the disorder,” but firstly, it was them who had denied me the legitimacy of my struggle. Secondly, “a person with an eating disorder is always driven to become sicker,” but firstly, they had been the ones to tell me I wasn’t “sick enough.” I had learned and internalized that not only would I be socially rewarded for starving myself, but also that I could only earn care by proving that I was sick enough to meet their criteria.

Ironically, I did call one of the residential treatment centers they had recommended. I stayed on the phone with them for about an hour, to do a “phone interview” with them. They asked me a series of questions, several of which inquired about my weight and calorie intake, which I was not supposed to be tracking during recovery. At the end of the call, they told me I wasn’t sick enough to meet their criteria. I was going to be dropped by my outpatient treatment team for being “too sick” and referred to a higher level of care, and yet the higher level of care wouldn’t take me because I wasn’t “sick enough” for them. Basically, I was in eating disorder purgatory. No one could help me.

I quit going to my therapy, nutrition, and medical appointments before they had a chance to officially “fire” me. For the next year or so, I attempted to manage my eating disorder on my own. I wasn’t recovering, I was just treading water at best. My family acted as though it didn’t exist, it was a thing of the past, or had never happened at all. Everything was swept under the rug or treated like the elephant in the room.

Finally, about a year later, I tried therapy again. This time at the University Counseling Center. The lady there was nice like vanilla pudding. She didn’t specialize in eating disorders, but she had a gentle, unassuming demeanor, and said all the nice, therapist-y things, like “that sounds like it must be really difficult” and “your feelings are so valid” and “I really appreciate you sharing that with me today.” One day, she gave me a sheet with a list of at-home exercises to try and resources to reach out to if I ever needed additional support between sessions.

The night I came back to campus from Thanksgiving break, I called the campus crisis hotline on that sheet because I felt like nothing was getting better and I just wanted somebody to talk to because I felt suicidal and alone. They asked me if I felt safe or if I felt like acting on those feelings. I said I wasn’t sure. They sent a police escort to my dorm to take me to the ER. As was true so many times before, “no” was not really an option. So I complied. Plus, I was desperate, and I thought maybe they could truly help me, since no one else could.

I only stayed in the hospital for a few hours. I never spent time in the psych ward. They had me urinate in a cup, give some blood, answer a few questions, wait for a very long time, and finally, they sent me home. With nothing more to offer but a medical bill for several thousands of dollars.

What I learned from that experience is that reaching out would lead to punishment. A lesson that I had already learned before, but now it had been doubly confirmed.

I don’t remember much of the following spring, because my psychiatrist had raised the dose of my meds after my hospital incident, so I spent most of the next few months in a numb, druggy haze. Deep down, I knew that this was not what healing was supposed to feel like. I was rapidly losing hope.

In April 2023, I quit my psychiatric medications cold turkey, with no guidance. I didn’t quit my meds because I felt like I was better, I quit them because I knew I wasn’t. If they had actually been effective, I should’ve felt better by now. My psychiatrist told me to get back on them and implied that I would need them for the rest of my life. So I stopped seeing her. I wasn’t warned of any withdrawal effects, so when I began to feel worse, I bought into the idea that it was my original “mental illness” returning.

The next few months were among the worst of my life, so I would rather skip the details for now. But to summarize, I was very alone, I had no one to turn to for fear of hospitalization, judgement, punishment, or being forced back on my meds against my will, and I was going through severe withdrawals that I didn’t even realize were withdrawals at the time. Not only did I relapse in my eating disorder worse than ever before, but I began a slow, painful, intentional suicide attempt, with starvation as my method.

Gradually, I began to shift from the self-blame I’d been taught, and I began to really question things. I questioned the effectiveness of the treatments, how their failures were always blamed on the patient. I questioned the arbitrary diagnostic criteria, and I questioned the “professionals” who let me down time and time again, who were supposed to be my source of support and guidance. I questioned biomedical explanations of “mental illness,” how little sense they made compared to looking at contextual factors like trauma or systemic oppression, and I realized how that was just another way of telling someone else’s story and starting with “secondly.”

I questioned the pathologization of my suicidality, how half the reason why I wanted to kill myself was directly because of all the things that were done to me supposedly to prevent me from killing myself or otherwise dying. I questioned the dynamics of treatment that had replicated the dynamics of the circumstances that led to my eating disorder, and I questioned the imbalance of autonomy-control vs responsibility-control, in recovery from an illness that is supposedly about control.

I questioned what recovery would look like free from those constraints. A recovery that honored autonomy, without reproachful assignments of blame dressed up as “responsibility.” A recovery that provided unconditional support and acceptance, without timelines, contracts, ultimatums, or coercion. A recovery that honored my limits, and treated harm reduction as a valid path towards healing if complete behavioral abstinence was not possible. A recovery that healed me rather than retraumatized me. A recovery that made me want to live rather than making me want to die.

On November 13, 2023, I decided to commit to eating disorder recovery. But this time, I would do it without the mental health care system. Without therapists. Without nutritionists. Without psychiatrists. Without professionals. Over 16 months later, and I’m still going strong. This is the longest I’ve ever stuck with recovery, and it’s the farthest I’ve ever come. I am still nowhere near through with it yet, but I am closer than I would’ve been, had I listened to the “experts.”

Of course, I haven’t done recovery entirely on my own. I have had help, though not from professionals. Frankly, I don’t have a long list of people to thank. Recovery is not for the faint of heart, and that includes supporting someone in recovery, too. Many have not been strong enough to rise to the occasion and have thus abandoned me on my journey, or led me to the conclusion that perhaps it was time for me to leave them behind. However, there are a couple of people in my life to whom I owe a great deal of my recovery success. What I am trying to say here is that even if you choose to recover without professional support, external support of some kind is absolutely vital and necessary. Otherwise, it wouldn’t be possible. Recovery is not just a “personal choice”; it takes a village, and community is key. And most importantly, care should never have to be “earned,” and support should not come at the cost of autonomy.

What I learned from my experiences with mainstream treatment is that the so-called “experts” actually turn out to be wrong a lot of the time. No one has the right to be the “expert” of someone else’s mind or body. No one has the right to tell someone else’s story and start with “secondly.” I dream of a non-hierarchical recovery paradigm where autonomy, authenticity, individual needs, and the wisdom of lived experience are central rather than mere afterthoughts. I dream of a world where these values are so commonplace that they seem obvious rather than radical. I believe that world is possible, and I want to help create it. The revolution starts with my own recovery journey.