Disclaimer: This post is purely my opinion based on my experiences. I am not a medical professional, and thus cannot fully speak to why we choose to treat eating disorders in this way in this country.
As someone who was hospitalized for my eating disorder, I have a lot to say about the way we treat eating disorders. I'm fully aware that my mindset at the time of my treatment was that of a disordered person, and therefore it's extremely difficult for me to fully remove bias from my argument. But nonetheless, it's never constructive- nor is it possible- to consider any kind of process or standard to be perfect. And from my experiences not only as a patient, but as a witness to the lives of other patients, there is a great deal of work that can be done to advance the way we handle and treat this mental illness.
Eating disorder treatment is still highly experimental, and in this blog post, I discuss my experience with hospitalization, and how I believe it could have had negative impacts on my recovery. I left the hospital not feeling empowered to change my life, but depressed, targeted, and untrusted. Based on my personal experience, and my observations during and after my stay, I can say with certainty that eating disorder patients are not being given the tools they need to not only physically recover, but to thrive, grow, and change.
The current standard of care results in many patients forming a vicious cycle of relapse and "recovery" based on the necessary accountability to an outside source. Patients are gaining weight to appease a doctor, testing their food fears to convince family members they're doing better, and lying about their mental state to avoid the daunting experience of hospitalization: that's not recovery.
Instead of leaving the hospital with knowledge and positive tools to utilize, patients are left with a scarily long list of requirements and rules to avoid readmission- requirements and rules that only feed a disordered mind and can cause more stress, anxiety, and paranoia than is healthy to anyone, let alone someone trying to overcome mental illness.
Forced hospitalization may be necessary to save a weakened body, but the system of operations we are currently using may be doing more harm than good to longterm recovery.
My parents were at a loss when they began to notice something was wrong. My normal pediatrician, not a specialist with mental health, let alone eating disorders, didn't have a clue how to approach treatment. Instead, he suggested my parents take me to a specialized doctor- something that opened the doors to my physical recovery. I was not informed that I was going to be seeing this doctor. I was pulled out of school for a vague "appointment", driven out to a facility I had never even heard of before, and poked and prodded by people I had never met. All with no warning. And at the end of that appointment, I was told I would be hospitalized.
Imagine the stress of that situation. Imagine being in a classroom one minute, and on your way to a foreign hospital the next. Imagine saying goodbye to your friends, saying you'll be back by lunch, and then not returning for weeks. Imagine the toll that could take on an already fragile psyche.
This resulted in, unsurprisingly, a panic attack. I didn't want to go to the hospital (for obvious reasons), and with energy that I can only attribute to pure adrenaline, I kicked and screamed and cried and tried to hurl myself out of a moving car. I begged and pleaded, I swore that if my parents loved me, they would not "lock me up". I was doing everything in my power to not be hospitalized.
Herein lies my second concern: I'm legitimately surprised that I did not have a heart attack at this point. My body was already in a remarkably fragile state, and the emotionally traumatic state I was put in threw my body into a state of stress. And to add onto that, I have no clue how someone in that kind of mental space could be expected to become an active participant in their recovery even given time to cool down. What is being created here is a dynamic that is entirely toxic to the process trying to be started- it is not saying, "We're going here to make things better." It's saying, "We're forcing you to go get fixed, because something is wrong with you."
This dynamic begins the recovery process with resentment towards the parents, medical professionals, and treatment as a whole. It creates an environment of distrust and uncertainty, and instead of feeling supported, the sufferer feels targeted.
The hospital I was treated at used, and suggested that parents continue with at home, The Maudsley Method. The Maudsley Method is a treatment specific to anorexia nervosa, and proposes that weight restoration as quickly as possible is of utmost importance. From a physiological standpoint, this makes perfect sense: help the patient regain the necessary weight, their vitals will balance out, their brain will return back to it's normal size and functionality, and the disorder will be packing its bags in no time. However, the treatment attempts to accomplish this goal of weight restoration through what I can only describe as force-feeding.
Now, from reading the official Maudsley Method website, this does not appear to be a part of their designated treatment plan. The plan encourages families to sit together at the dinner table until all the necessary food is consumed, in order to support the patient in their weight gain and food reintroduction. However, the practice is largely separate from the theory.
My first meal at the hospital was two blocks of plain, texturized plant protein, a mountain of cooked vegetables in some form of sauce, some kind of grain-blend, a cup of juice, and two rolls of bread with some kind of spread. While to some this might sound like a fairly normal, if not slightly large meal, imagine going from not eating for days at a time to this. It's not only mentally intimidating, but physically excruciating. And to top it all off, I was required to eat it all- or else a meal replacement drink would be provided for what I couldn't finish. It was slow, and it was painful, and I cried throughout the whole meal. And because I had arrived at the hospital after dinner was served to the rest of the floor, not even a half hour later I was presented with my "evening snack". After eating more than what I had eaten combined in weeks, I was watched like a hawk as I crammed down packs of graham crackers, nut butter, and fruit. I remember literally feeling like my stomach was going to burst.
That was my first two hours of hospitalization.
As time went on, the meals got bigger, the food more intimidating, the timing more abrupt. I remember feeling like I would never be hungry again, and the intestinal discomfort was unbearable. There was no sympathy, only reminders that if we didn't eat fast enough, we would be given a shake to drink. I remember meals where we'd all be sitting around the sterilized plastic orange dinner table, staring at our plates and cutting our foods into the tiniest pieces possible. I remember staring at the clock, calculating exactly how much time we had left to try and squeeze in food that didn't seem to fit. I remember girls sobbing into bowls of food, clenching their fists and closing their eyes like we were being forced to eat cockroaches. I remember one girl, who had eaten to the point of nausea, falling into hysterics because there was still a spoonful or two of soup at the bottom of the bowl when time ran out, and now she'd be forced to drink a shake for the whole meal.
The environment is my next concern. Placing that many sick girls together in one space is a dangerous game. It felt like a competition to see who could eat slower, who could display the most disgust for their food. With varying meal plans, the very food on our plates was the subject of competition. On one hand, a big meal meant you were very thin, thinner than the rest. On the other, a smaller meal meant you would stay that way.
I remember girls smuggling quarters into their underwear for weigh-ins, I remember nurses pulling paintings away from the wall and stashed food raining down onto the floor. I remember discussions on ways to fudge your vitals, like holding your breath to increase your blood pressure and pumping your arms in the air when the nurse wasn't looking to increase your heart rate. I remember girls exercising in the showers and doing l-sits in their wheelchairs. It was a circus of disordered behavior.
I'm remarkably lucky that my mother stayed with me for the duration of my stay for a number of reasons. For one- many girls didn't see their parents for days, or even weeks, at a time. Those girls often struggled the most, and it's easy to see why. You already feel like you're being sent somewhere "to be fixed", and now it feels like you're truly being isolated for correction. My mother didn't leave the hospital once during my stay, and her company made the long stretches of simply laying around and waiting for the next difficult meal much easier. But her presence didn't just help with comfort- it helped keep me honest. It was impossible for me to engage in the antics happening on the floor when my mother was right there with me. Stashing food, secret exercising, or even purging would not have been logistically possible. And seeing her pain over my hospitalization was enough to make me want to get out of their as fast as possible: meaning rest, food, and more rest. No time for weight manipulation or secrecy.
But the entire environment of the hospital is the strongest concern I have with this form of treatment. I felt like a caged animal- literally torn out of my (admittedly toxic) environment and thrown into a class cage to be stared at and judged. Those doctors aren't there to provide sympathy, they're there to make you stable enough to go home. There's a strong air of mistrust for all of the patients, clearly earned by the manipulative behavior of many of the patients on the floor.
You're informed from the beginning that everything you do is being watched, recorded, and evaluated to determine the length of your stay. I remember sobbing to my mother and begging her to get me out of the hospital, and her begging me in return to stop because we were being recorded. She feared that my distress would only lengthen our stay. It's a truly bizarre and startling way to live- knowing that you're being watched, and knowing that anything you say, do, or feel can be used against you.
And since we aren't oblivious to it, manipulation is nearly unavoidable. What do you think an anorexic who wants nothing more than to go home is going to say to a temporarily assigned therapist? "No, I'm still struggling and I think I'm going to try and go back to my old habits when I get home. I should stay longer." Or are they going to say, "I'm doing great! I'm positive I'm ready to get home and change my ways."?
You end up feeling like an animal. You can't shower without a foot in between the door and the frame. You can't use a toilet, you're handed a plastic bin to be emptied periodically. You can't drink water without asking first. You can't walk from the bed to your wheelchair without looks of disapproval. You can't say you don't like the taste of a food. You can't draw a picture without it being filed away. You can't say your stomach hurts without someone thinking you're trying to purge. You can't do anything without first evaluating it in your mind to ensure that it can't be misconstrued in some way- and because of this, you end up not talking much at all.
When I finally left the hospital, I felt like I could trust no one, because no one trusted me.
It's damaging enough to call someone a manipulator and a liar, but it's another thing entirely to actually treat them that way.
I was physically stronger, but mentally weaker than ever before. I literally felt like I had nothing- no identity, no worth, not even my name. I had been stripped of my personality, because any emotions I expressed simply opened doors to a barrage of accusations and probing questions. I was robbed of my artistic expression, because anything I painted or wrote was subject to scrutiny. I was torn apart again and again until I couldn't separate myself from the hollow shell of a person that I forced myself to become in order to get out.
As a result, my recovery was long and slow. I don't feel like I actively began recovering until years after my hospitalization, and I truly believe that I suffered from damaging ramifications of such a traumatic event. The experience of my hospitalization made me literally despise the idea of getting better, but made me become obsessed with it. The follow-up appointments were so stressful, I literally lost sleep over them. I was constantly reminded that another stay at the hospital was only one bad vitals reading away, and the pressure caused my blood pressure and heart rate to become unreliable.
Daily, and then weekly, and then bi-weekly, and then monthly, I was shuffled into a doctor's office where I had to provide a urine sample (one that couldn't be dehydrated, because then I'd be unhealthy, and one that couldn't be too hydrated, because then I was trying to manipulate my weight), strip down in front of a nurse (to ensure that I wasn't storing weights in my underwear), and step on a blind scale, praying that it hadn't slipped and I wouldn't be shipped away again.
I grew obsessed with my weight gain- it needed to be good enough to keep me out of the hospital, but it still was stressful to my mind to eat. I had to eat at the same times everyday- 7:00 AM, 10:00 AM, 1:00 AM, 4:00 PM, 7:00 PM- down to the minute on the clock. A minute late and I could "feel" my weight dropping. I worried that my mother wasn't measuring my food right, and it would either be too little or far too much. I worried about the kinds of food I ate, and how they were different from the foods I had eaten in the hospital. I worried about my weight, because no one would tell me what it was, and I couldn't tell if I was gaining or maintaining or losing. I spent hours in front of a mirror, staring at my body and wondering if it looked "healthy enough".
I became as obsessive with getting big enough and I had once been about being small enough, and it was a result of the way I was being treated.
The care I received is considered to be literally some of the best in the world. This form of treatment is considered to be the most successful at treating anorexia nervosa, and I stayed at a renowned hospital that girls were flying from all over the country to stay in. And yet, I truly only feel that it made me more obsessed with food, my body, and my health than ever before.
It was only with time away from the hospital and away from the constant checking that my mind began to heal. The added stress and anxiety of trying to meet certain requirements made me just as, if not more, isolated than the height of my eating disorder, and once those stresses began to dissipate, I was able to focus on the true focal point of recovery: happiness. I began to escape the obsessions that had been handed to me- this amount of weight gain per week, this number of meals and snacks, this timing of food- and listening to my body for the very first time. Stress around mealtimes began to lessen as I began to actually eat when I was hungry and not when the clock read exactly 1:00. Eating anywhere but my house began to slowly feel safe again as I got used to the fact that people weren't watching me eat with judgment anymore. Confidence in myself and my ability to heal began to emerge as I was able to separate myself from people who didn't trust me.
My body was stable after my hospitalization, but it was certainly not thriving. They didn't teach us how to eat- in fact, they wanted to speak to us as little as possible about the food we put in our body. I didn't have a clue what a balanced meal was, or what a healing body needs. I had no concept of micronutrients or vitamins or minerals. Food was portrayed to be nothing but a vehicle for calories to aid with weight gain, and not something that should nourish, repair, and bring joy. I had to learn for myself, through research and experience, what food makes my body thrive.
I learned that vegetarianism- which was allowed by my doctor in recovery- was not the best choice for my body. I learned that eating a sugary breakfast with no protein or fat set me up for exhaustion and weakness throughout the day. I learned that a nut butter sandwich for lunch was not enough for my body that was trying to grow and rebuild. As I have learned to eat I've seen drastic change in the way I feel, perform, and look. Now, people say I look strong. They say I look healthy and vibrant and alive. But when I left the hospital, I looked beaten down and exhausted from the high-energy but low-nutrition food I was eating and the stress that surrounded that time in my life.
I was getting plenty of calories, but I wasn't getting enough real food. "Ensure" is not real food.
The hospital itself is not something I regret. I needed to be forced to be still and to eat in order to stabilize me physically. But mentally, it set me up for a relapse. And I believe it does that for many more patients than we think. Many of the girls on the floor had been there two or three times, and while the pervasiveness of mental illness may be the root of it, I believe the environment we're exposed to and the expectations place on us only exasperate that condition.
I truly only feel that I've really made progress in the past year or so, and that was on my own. It was only after I was able to release the past- the hospital, the doctors, the experiences- that I could move toward my future.
I don't know what can be done exactly to improve this form of treatment. I strongly believe that hospitalization is a necessary part of recovery, due to the fragility of the body and the necessity to rebuild the body as quickly as possible. But it needs to be made clear that this is just a time making a mental recovery feasible- giving you a chance to live long enough to nourish your mind as well. We need to remove the elements of mistrust and targeting of patients. Instead of treating them like prisoners who can't be trusted, they need to be treated like what they are: sick people. They need to feel like they can have truly open and honest conversations with their team, instead of feeling like anything they say will be used against them. They need to be shown that Ensure and meal replacements and "the tube" are not available in real life, and that learning how to truly nourish your body means learning more than the amount of calories you need. They need to leave the hospital feeling empowered- not threatened with the possibility of return.
Empowerment is the most under-utilized tool in eating disorder treatment. Yes, patients will be manipulative. Yes, they will do anything they can to hold onto the disorder that has become their identity. But if you treat them like human beings with potential and provide them with knowledge and information that puts them in a position to take control of their lives, change can truly happen.
Had I felt empowered instead of targeted leaving the hospital, I can guarantee that my recovery would have changed drastically. Instead of spending months, and even years, of simply trying to convince the people around me that I didn't need to be "sent away" again, I could have focused on loving myself. Instead of obsessively trying to fit my body into the numbers the doctor wanted to see, I could have actually lived in my body and noticed what I actually felt like. I would have felt supported, loved, and ready to change my life instead of feeling like I was just trying to keep my head above water for other people. My recovery would have been for nobody else but me.
I don't have a solution, but I have a question that needs to be asked: Are we setting up those who are struggling for success? Or are we just attempting to make them meet the requirements to step away from death's door?