I can only speak for myself when I say I feel underrepresented and misunderstood by Health and Psychology Textbooks. I can’t say the examples and clinical criteria in the school books don’t represent real, statistical data based on actual cases of eating disorders, but I do not fit into that data. I was “severely underweight” for two years, and at a “healthy BMI” for four, but felt out of control, overwhelmed, exercise-and-food-obsessed, and helpless for all six. According to DSM-5 criteria for Anorexia, only the first two years of my disorder would ‘count’ as diagnosable. Does that mean that my eating disorder wasn’t real? That I didn’t suffer for all six years and battle with my disorder every single day? In the past, I wouldn’t care if a professor failed to mention the outliers or the widespread grips of this disease and how its physicalities don’t even compare to the mental takeover. However, today, sitting in my 300+ person psych lecture at one of the most esteemed Universities in the country, I finally see how damaging these academic misconceptions can be towards fueling the stigmas and lack of understanding for eating disorders.
To preface this, it’s important to note that what I’ve learned in health classes and psychology classes is not ‘wrong’. The DSM-5 dictates that in order to be diagnosed with Anorexia, you must be engaging in the characteristic behaviors such as restricting food intake and type of food eaten, being obsessed with losing weight linked with a fear of gaining weight, as well as extreme body dysmorphia, all in addition to being extremely underweight. These criteria definitely fit my story to some extent, and it’s not surprising that many women and men experience these symptoms at certain points of severity in their disordered states. However, this type of diagnosing makes it so that someone has to be experiencing severe impairment and already be in a downward spiral before they’re diagnosed or made eligible for recognition and treatment. Not only does this perpetuate the idea that eating disorders have a ‘look’ or that you can pick them out based on body type or weight, but it also makes it impossible to be clinically recognized as having an eating disorder before there is impairment and you are already severely underweight. Further, “severely underweight” is classified as under a BMI of 18.5, which for someone 5’8 like I currently am, would be under 121 lbs. For the first few months of my disorder, I danced on the line between severity and being “completely fine.” On the outside, I looked like a “skinny” 13-year-old, and my doctors assured my parents that I was “fine,” but probably shouldn’t lose more weight. When I protested my parents’ concerns and told them I was just being “health-conscious”, they were worried but were not inclined to get me help because Anorexia had a look that I didn’t fit yet. I was exercising 7 days a week for three hours at a time, eating less than 900 calories a day, and constantly feeling surrounded and beaten down by voices telling me I was fat, unworthy, and just downright disgusting. Even being 5’5 and 108 pounds, I was convinced the skin on my hips was excess fat, that my hip bones jutting out was a sign of weight gain, that everything wrong in my life was due to my absolute repulsiveness. Even then, according to textbook criteria, I would not be considered Anorexic. It’s not my parent’s or my doctor’s fault, but rather is an institutional problem that needs to be addressed. By adhering to alienating clinical guidelines, we perpetuate an extremely dangerous narrative towards eating disorders. In my experience, the psychological torture was enough to send me over the edge even before I was 89 pounds with low blood pressure. Nonetheless, my friends and family couldn’t take more action because the norm is to only cry “Anorexia” if someone looks like a skeleton.
This alarming narrative also made it difficult to validate my disease after treatment. Yes, I eventually did hit that spiraling point and was in and out of inpatient facilities for seven months, but afterwards, when I was released at a “normal weight,” I spent four years struggling to stay right at that line. My metabolism was so depleted and confused from my cycles of starvation and over-exercise that it remained in a starvation-mode state. In other words, it was unable to increase to a normal level where I could maintain weight by eating and exercising “normally.” Instead, I remained right at that 18.5 BMI weight for four years by eating extremely restrictively. I’ve was terrified of any “unclean” foods, and exercised a strict six days a week for about an hour and a half at a time. While most people would lose weight doing this, my body and metabolism were so used to the low levels of nutrients and rest that this allowed me to maintain mine. I was technically at a “healthy” BMI, so no one suspected I still had crippling issues.
This also poses another huge issue with Anorexia education: the idea that once you are dismissed from treatment and have achieved weight restoration that this means the eating disorder has been “terminated.” In my Psychopathology class a few days ago, we learned about the Maudsley Family-Based Therapy for Anorexia which involves three phases. First, the idea of the three phases is extremely misleading. Treatment is a trial and error process that can take someone, like me, seven months, or it can take someone seven years of being in and out of inpatient, outpatient, and psychiatric institutions. I met a 30-year-old friend in an outpatient facility who had been in and out of treatment for 14 years. The idea that recovery is a three-step journey involving concrete mechanisms standardized for all cases creates a narrative of superficiality surrounding eating disorders. For example, the third phase, endearingly called “Healthy Identity,” involves establishing familial boundaries, weight maintenance, healthy body image, and “termination” of the eating disorder. “Healthy body image” does not just happen when weight is restored. For a lot of patients, including myself, it takes years to accept that weight maintenance is the only way to stay healthy and out of treatment, and then you have to learn to live and be comfortable with the idea of that new weight.
Further, an eating disorder is never terminated. This is why it is so difficult to find that healthy body image: it usually coexists alongside your eating disorder. Recovery is not about terminating your eating disorder and just magically looking in the mirror and loving yourself. Instead, it’s about learning to challenge the existing disorder and choose life over it. To this day, those voices have not subsided, but recovery is about shutting them out and making choices in spite of them. Not once in class did we discuss the vigorous process of regaining control outside of treatment, or what recovery looks like in the long term. Many patients, including three of my roommates from treatment, relapse and return to treatment, or struggle for years as I did. In treatment, we labeled ‘scary’ foods (often ‘unhealthy’ fast food or sweets) “Fear Foods,” and would be challenged to choose them at mealtimes. I used to dread Pizza Night, or days when we would go to the movies and be challenged to buy buttered popcorn. Today, there are days when I really want to eat something I previously labeled as a “Fear Food,” and am able to eat it in the moment and even enjoy it. However, minutes later the voices come back and tell me how fat I am and how I’ll need to exercise later to compensate. Then, I look in the mirror and, remarkably, it looks as though that one cookie or piece of pizza has made me gain 10+ pounds. However, recovery for me was not about this process of guilt and body dysmorphia just simply being “terminated.” Rather, it was my new ability to rationalize my thoughts and remind myself that one or even five “Fear Foods” could not, scientifically, make me gain even a pound. I also had to see the shapes presented to me in the mirror and remind myself that my reflection was only an irrational mind game and that if I had gone for a run instead of eating a “Fear Food,” I would be seeing something different. This is what recovery is. The idea that if you throw an Anorexic patient in treatment to restore weight that they will emerge a new person without all of the self-loathing, inner turmoil, and crippling dysmorphia is extremely detrimental. I worked my ass off for years to fight my eating disorder and be stronger against it, and this idea that recovery just happened for me or anyone else struggling is downright offensive.
It is also important to note that having an eating disorder is not just about physical restoration and body image. When you have Anorexia, you develop a relationship with it. In my recovery process, my fellow patients and I fondly named our eating disorders “Ana” for short. This personification of our diseases allowed us to attach emotions to the voices inside our head, as well as explain to ourselves why we so often chose Ana over other relationships and our own lives. For me, this was imperative in breaking up with my eating disorder. As Ana became less of a disease and more of a physical entity or even a friend, it became clearer to me why she resembled a toxic relationship that needed to be addressed. Ana alienated me from my friends and family, made me self-deprecate so that I hated myself enough to rely on her and hurt myself in the process, and lied to me and tricked me into doing what she wanted. In treatment and recovery, there is a level of intimacy patients address between themselves and their eating disorders that reveals why it is so hard to move on and choose themselves over this relationship. You live for years thinking Ana is there for you and helping you control your life and make yourself into a better person, but it is the analyzation of this toxic codependency that truly reveals what it is you need to rediscover outside of your eating disorder in recovery. Anorexia is not just a superficial asphyxiation with one’s body and “looking good.” It is a much more complex emotional dependency that is rooted in becoming attached to the reassurance that Ana provides and being too afraid to let her go.
Though it is important to learn about eating disorders in an educational setting, the way the curriculum is set up is extremely detrimental to any progress we are making in ending stigmas and better preparing people to help themselves, friends, and loved ones. The textbook criteria and DSM-5 guidelines are clinically backed by data and science, but there needs to be a more open discussion supplementing these guidelines and reminding students that these disorders matter and are real outside of the textbook. There are other reasons why Anorexia is the deadliest psychiatric disorder in the world – not because of its typical comorbidity with Depression and Suicide, but because of complications from the fatally low weight resulting from the disorder. It’s not my professor’s fault that he gave a lecture on a chapter from our Psychopathology Textbook, but there is a greater institutional narrative that is not being addressed that greatly alienates thousands of patients who live in pain and self-hatred alongside what the textbook designates as “diagnosable.”