ARFID recovery stories: embracing life beyond ARFID

 "Anorexia and ARFID were all I knew; I had few memories before my eating disorder began." ©Oier / Adobe Stock

 I grew up a skinny, androgynous child, buried in thick books and too-large clothing. I had sensory issues, and could not tolerate changes in temperature or clothing that “felt wrong,” or any aspect of the environment that I deemed “too loud,” “too bright,” “too crowded,” or “too overwhelming” in any other capacity. I was described as “difficult,” by my parents, “weird,” by my peers, and “interesting” by adults who I’d strike up conversations with about whatever I was reading or writing. 

Social clues eluded me, and my mind struggled to make sense of the world around me; the expectations and unwritten rules of how to interact. I didn’t have interest in making friends; people were too dynamic and changing, and I preferred rules and routine within which I could exercise control. It is perhaps fitting, then, that I developed a phobia of vomiting, what I perceived to be the ultimate loss of control. I began struggling with anxiety and panic attacks when I was seven years old, all focused around getting sick.

Eventually, the fear of vomiting manifested in chronic stomach aches and nausea (in hindsight, likely a combination of anxiety and lack of nutrition), and I became convinced that any food other than packaged Hostess cupcakes, dry ramen noodles, and jelly beans would make me ill (I still have yet to identify why these three foods were the only “safe” options).

I quickly lost weight, unintentionally, but I was already small for my age, so it didn’t take much to land me in the hospital for malnutrition-related concerns. I had no body image issues, but what we now understand to be the symptoms of ARFID [avoidant-restrictive food intake disorder]-- fear of food making me ill, lack of body image issues, sensory difficulties, weight loss in the absence of an underlying medical condition, fear of foods other than those considered “safe”-- was diagnosed as anorexia nervosa. 

I was shipped off to an inpatient eating disorder unit at age twelve; amongst adults and older teens in a barely-supervised cesspool of self-starvation, I learned how to restrict, how to count calories, how to avoid the dreaded “tube,” and why my prepubescent body, all angles and straight edges, seemed to be the envy of a group of much older individuals. I developed significant body image issues, which morphed into anorexia

Amongst adults and older teens in a barely-supervised cesspool of self-starvation, I learned how to restrict, how to count calories, how to avoid the dreaded “tube,” and why my prepubescent body, all angles and straight edges, seemed to be the envy of a group of much older individuals. I developed significant body image issues, which morphed into anorexia. I was diagnosed with ARFID at age nineteen, the same age at which I first heard the label “severe and enduring” applied to my diagnosis of anorexia. 

 I was diagnosed with ARFID at age nineteen, the same age at which I first heard the label “severe and enduring” applied to my diagnosis of anorexia.

The years went by, with brief stints in outpatient programs and one helpful stay in a residential program, but I always slid backward and ended up losing the small amount of weight I’d managed to gain, and my rituals, now including exercise, became more entrenched. My world consisted of counting, panicking, and academics, the latter of which I clung to like a lifeline. I suppose this brief explanation does not do justice to even a fraction of my story pre-2022. 

But I am writing to discuss not the ten years that preceded recovery (maybe I’ll do that at a later time in a later essay), but to share how I managed to save myself, and ideally provide some hope to those in similar situations, perhaps telling themselves they’ve been sick “too long,” or their cases are “too complex,” for recovery, perhaps lacking access to professional help, perhaps medically compromised, perhaps beaten down after hearing from yet another person that they’ll “never get better.” Hopefully, if you are reading this, you want more for yourself than that.

 My recovery came from a place of self-love, but rather a last-ditch attempt to save my own life (and of course it could be argued that this is indeed a form of self-love, but I didn’t recognize that at the time. I just knew that after being told I didn’t have long left, well, I had to give it one last go.)

I have always been hyper-independent, reluctant to rely on anyone. If I was going to recover, I knew it had to be sustainable, a method that wasn’t dependent on the variable nature of others. I loved structure, I loved routine and rules. People are not static. They are complex and changing and confusing to figure out. Psychology helped me make sense of my interactions with others and gave me a context within which to socialize. I craved not to be taken care of, but to take care of others. I wanted to be the help that I wish I had been able to access for years.

But that was part of the problem. As much as I craved the structure, the routine, and the support that a treatment program provided, I was unwilling and unable to tear myself away from school and work, which both centered around my one love, psychology. As much as I wanted to leave my struggles in my tiny studio apartment in Philadelphia, leave the soul-draining routine of endless exercises and stepping on and off the scale, leave the familiar yet sickly purple and yellow of the Planet Fitness Logo I saw every morning…it would be there when I returned. I was not eligible to take another term of medical leave if I was to graduate on time, and starting a new job and then immediately seeking treatment wasn’t an option, either. I had tried that, and fought tooth and nail to re-establish myself amidst the aspects of my life that tied me to my passion. They wouldn’t wait for me.

School, work, and the career I had dreamed of since I was a child would slip away, move on without me as I languished in a treatment center that may help in the short term, but would thrust me empty-handed back into what I knew. The real world was unforgiving. The world of my eating disorder, however, the world of restriction and exercise and compulsions and rituals, that world would welcome me back with open arms, and I’d be back to square one.

In October of 2022, my body began to shut down. I collapsed while out for yet another walk and was brought to the emergency room, where I was hooked up to an IV and heart monitor that sounded an alarm every time my pulse dropped below 40. I was told that I likely wouldn’t make it to the end of the year. The toll that 14 years of malnourishment had taken on my body was too great. “I’m not going to die,” I said. “I don’t want to die.” It didn’t occur to me at the time that I may not have a choice anymore. I couldn’t think myself out of organ failure.

I signed myself out of the hospital as soon as my vital signs stabilized. 

I began the long, arduous process of calling treatment centers yet again, desperate for help. I could not find a residential program willing to accept me due to my cardiac complications and low body weight. At this point, I understood the medical necessity, but the thought of being held in a hospital bed, dependent on others to provide for me, made me squirm with discomfort. That wasn’t what I wanted for myself. I wanted to do it on my own, because I needed a reason to get better, and once I was released from the hospital…then what? Then what was my motivation?

I was no stranger to the risks of refeeding syndrome. It seemed daunting, the punishment for being so ignorant as to attempt to save my own life. But as weeks passed, and I continued searching for an inpatient unit that would accept my insurance, my options began to dwindle. I didn’t want to die, but I didn’t have anything left to give to the world besides the fact that I wanted to live.

So, I applied to work for the suicide hotline. 

 It was a fully remote job, 988 had just been launched, and I felt a draw to the position. Ever since I was young, I have experienced considerable anxiety answering and making phone calls, but I loved the intensity of the work, loved that my voice and time could impact the lives of others. I wanted to give all I could, even when I felt as though I had nothing left. I slowly began to feed myself enough to stay alert through my shifts, and as I got stronger, I was able to consider the possibility that I would, in fact, make it to next year. I set myself a weight goal, and decided that if I was medically stable, I would submit my applications to work as a counselor at a psychiatric hospital that I believed I had no chance of working for, but that had been my “someday, if I could work anywhere” dream for many years. At this point, I would still be far from weight restored and far from recovered. I spent days writing down the pros and cons of taking the risk to apply. Eventually, it occurred to me that I was again waffling back and forth, as I had for years, creating plan after plan but failing to enact any of them because it wasn’t the “right time.”

Still medically unstable and unable to walk up the stairs without losing my breath, I understood that I still had a long way to go. I knew that if I got an interview, if I got the job, I had to push myself the rest of the way to get healthy. Employment wouldn’t make me recovered, but it would give me a reason to recover and stay recovered. If I got the job and I couldn’t keep it, then this wouldn’t be a door that would open again. Working for this particular employer and failing to keep my job due to my eating disorder was the most soul-crushing thing I could imagine. But if I got it, I had something to keep fighting for, and I could fulfill my purpose that I had imagined all those years ago.

I got the interview. And at the start of the new year, I got a job offer.

I had to adapt my environment to reflect a situation in which losing whatever was motivating me at the time was far scarier than gaining weight. Academics, as much as I’d hoped they could, would not suffice in providing the high-stakes reinforcement that I needed. Throughout my middle, high school, and college years, I’d been told “you can’t succeed in school while undernourished, you can’t devote time to your degree while you’re spending hours each day at the gym, calculating and recalculating your calorie allowance for the day, you can’t have the energy to write the substantial amount needed for your papers and projects if you aren’t eating.” But I could, and I did, and this very fact seemed to reinforce the mindset that I could survive off coffee and energy drinks and the adrenaline that came with walking 30,000 steps per day (my arbitrary “quota”).

Academics came easily to me, but everything else in my life suffered. For over a decade, I experienced little social involvement, few hobbies outside of my passion for psychology, and never a break or any type of vacation. I skipped holidays, opportunities to make friends, and isolated myself within the confines of my schoolwork, sitting, and rigid exercise routine. I viewed each day as a challenge to be endured without passing out (I was not always successful in this; I passed out quite a few times and chastised myself for becoming “soft,” pushing myself even harder the next day to make up for the momentary lapse in machine-like autopilot that I had become used to.) Punished myself for unintentionally feeling humanly exhausted. 

I didn’t know how long I could keep it up, but I hadn’t crashed and burned yet. I didn’t experience the mental collapse that I was told would be inevitable. I graduated with a 3.97 GPA, and without academics and the deadlines of papers driving a seemingly endless force to create, write, and keep moving, my body began to crumble. My weight declined rapidly as the time that I spent writing, researching, and enjoying the brief glimpses of happiness that my passion brought was replaced by more time to exercise, count my steps and calories, and focus on avoiding food. I no longer needed to eat the bare minimum required to focus on my studies, so why eat at all?

But working for an employer that I’d dreamed of for years, I HAD to eat. Losing my job was scarier than gaining weight. I had to set the stakes high for myself, and create a rigid structure where none previously existed. Forced myself into a recovery that I was still unsure I wanted. I wanted to work and needed a body that could handle it. I tried to adopt the machine-like adrenaline that got me through school, through years of denying myself food, through grueling workouts. I am working to get the body I need. But this body must be healthy enough to help others; it is not an ornament; it is a vehicle that I must use to perform CPR, to take vital signs, to ensure everyone’s safety, to talk to people who have been where I am and will hopefully never be again.

I forced myself to eat things I felt safe with, things that my stomach could handle. I forced down Gatorade and hoped every night that I would make it out of this alive.

I threw my entire self into my job, knowing full well that if this door closed, that was it. I was working at a psychiatric hospital that I’d dreamed of being employed for since I’d first heard about them as a child, all those years ago when I began to wonder what my future could look like if it wasn’t solely consumed by anorexia. I knew that if this door closed, another wouldn’t open. If I let my eating disorder take this from me, it truly had won. I had not been able to be convinced by doctors, therapists, or treatment centers to “trust the process.” I couldn’t wrap my head around the idea of recovering just for the sake of recovering. Anorexia and ARFID were all I knew; I had few memories before my eating disorder began. 

There was no “before the eating disorder.” Only an unknown, ambiguous “after, if at all,” which, as someone who thrives on concrete directions, structure, and routine, frightened me more than staying in my inhuman, self-created concrete world. I have never understood ambiguity, nor been receptive to following a path or structure that I didn’t understand or create. I understood, at this time, that I had to manufacture my own “after,” throw myself into it, and hope for the best. It seemed as though I had been in a mental fog, on autopilot, for the past fourteen years, and I was inching my way toward becoming a flesh-and-blood human being again. 

Slowly, my job became more important than my weight. Slowly, I began to feel the same satisfaction while driving back from work as I did when I hit my step quota or successfully starved another day, but this satisfaction was coupled with an exhaustion that appeared sustainable, rather than draining.

I still struggle to fuel my body, and I still do not enjoy eating. The behaviors associated with the ARFID part of my eating disorder are still very entrenched. I have not shared this part of my life with my coworkers, because I tend to be more reserved when it comes to my personal life, and I don’t know how they’d react. Social cues and interactions are still hard, but I love my job, and interacting with patients each day reminds me why I pushed myself to get better just as hard as I pushed myself to disappear. I know that this is what I was meant to do, I knew that since I was a kid, and though my passion for psychology never wavered, it took battling through an eating disorder for me to develop the empathy and attitude necessary to understand people’s struggles. I learned all I could, and I gave all I could, and if continuing to give my entire self to my work means recovering, tolerating (not loving) my body, giving up my rigid exercise routine, and tolerating (not loving) food, then so be it. I want to continue to give all I can.