Exploring the Shortcomings of Eating Disorder Diagnoses
In short: you deserve help, no matter what.
In 1980 the Diagnostic and Statistical Manual (DSM) by the American Psychiatric Association was in its 3rd edition and for the first time included a section describing eating disorders, specifically anorexia nervosa. By 2013 the DSM was in its current, 5th edition, and now includes criteria for: anorexia nervosa (AN), bulimia nervosa (BN), pica, rumination disorder, avoidant restrictive food intake disorder (ARFID), and for the first time included binge eating disorder (BED). Additionally, the DSM5 includes two umbrella categories: unspecified feeding or eating disorder (UFED), and other specified feeding or eating disorder (OSFED).
Having these disorders defined in the DSM provides a framework for diagnosis which can assist providers in delivering evidence-based care, increasing the likelihood of insurance coverage for treatment, and helping folks to feel less isolated in battling their illness. There are also limitations to having specific criteria to meet the diagnosis of an eating disorder. It means that far too many folks struggle with their relationship with food, but by not meeting the exact criteria and/or by not matching the (harmful) stereotypes associated with eating disorders, their symptoms are missed since many providers have very little training on EDs. In addition to the lack of training that clinicians get on eating disorders that perpetuate under-diagnosing, it is very common for disordered eating behaviors to be encouraged by the medical system (thanks to weight stigma). Additionally, people suffering from eating disorder behaviors, without a diagnosis, can feel as though they are not “sick enough” to receive support or are unable to afford treatment without their insurance covering treatment costs. This is a major problem.
Let’s start by looking at the diagnosis of atypical anorexia nervosa (A-AN), which falls in the category of OSFED. As eating disorders expert Dr. Gaudiani explains “in atypical anorexia nervosa…patients engage in all the same behaviors and have equally severe body image distortions and fears as those with AN, but are not formally underweight .”1 This illness holds the same dangerous physical and mental health consequences as the more known diagnosis of anorexia nervosa.
Yet, atypical anorexia is at least 2-3 times more common, despite “atypical” being in its name, when compared to “typical” anorexia nervosa.2
Folks can be suffering from the same life-threatening medical issues associated with anorexia nervosa while living in a size that BMI categorizes as “normal” or even “larger bodies”. Contrary to popular belief, malnutrition can occur at all body weights.3 This is one of the ways that weight bias and fatphobia can be so dangerous. Patients suffering from atypical anorexia nervosa may report their behaviors or symptoms to their healthcare providers, only to be praised for their “dedication” to “health.” People are often overlooked and undiagnosed because they “don’t appear anorexic,” but in reality eating disorders do not discriminate or have “a look.” Disordered eating behaviors are dangerous and do not promote health in any size body.
Some eating disorder diagnoses include “severity grading” ranging from “mild” to “extreme” based on the occurrence of behaviors or based on the patient’s Body Mass Index (BMI). The severity grading for anorexia nervosa and bulimia nervosa is based on the BMI, which is a problematic tool, and extrapolates that the smaller the BMI, the illness is more severe. This can also be interpreted as the larger the BMI, the illness is less severe. While being “underweight” can hold dangerous medical complications, this amplifies the inaccurate assumption that eating disorders only occur in folks living in smaller bodies. This assumption can also contribute to the idea of “not being sick enough” to warrant concern or treatment. Does a “mild case” of anorexia really exist? By including measures that quantify the severity of the disorder, the manipulative eating disorder can convince the person suffering from the illness that they are not that sick to require treatment or support.
Certain eating disorder diagnoses, like bulimia nervosa and binge eating disorder, require criteria to be met in the number of times a behavior is occurring over a specific period of time. For example: “having binge eating episodes on average at least once a week for three months.”4 Does this mean that someone experiencing binge eating episodes for the past 89 days is a-okay, but on that 90th day it becomes a problem? Or if someone is averaging a binge episode every 8 days, but not weekly, that they do not have an eating disorder? In this way, eating disorder diagnoses can mirror eating disorders themselves, in being rigid and binary, either meeting diagnostic criteria or not. When in reality, eating disorder behaviors can occur on more of a spectrum. Regardless if someone does or does not meet the specific DSM criteria for an eating disorder, if they are struggling with food, body, and/or movement, they deserve support whether or not there is a formal diagnosis.
This support can come in many different forms such as inpatient hospitalization, a residential or partial hospitalization program, and outpatient care. The level of care is typically determined by the severity of behaviors, medical stability, and the person seeking care’s finances, preferences, and needs. Treatment often involves a combination of medical monitoring plus psychological and nutrition counseling. Nutrition counseling typically is delivered by a Registered Dietitian (RD). Although Registered Dietitians are considered the medical nutrition experts, we are unable to diagnose eating disorders. This again can be a barrier to folks receiving the care that they deserve as RDs are typically the first providers to catch an eating disorder since most health care providers do not discuss food or one’s relationship with it. It is worth noting that many RDs are not trained in eating disorders, due to the outdated belief that eating disorders are extremely rare. A trained eating disorder RD will discuss their clinical findings with their clients and other members of the treatment team so that clients can receive quality care and sometimes an eating disorder diagnosis.
Diagnosis or not, you are worthy of quality, compassionate, patient-centered care.
Sources:
Gaudiani, J. L. (2019). Sick Enough: A guide to the medical complications of eating disorders. Routledge.
Harrop, E.N., Mensinger, J.L., Moore, M. & Lindhorst, T. (2021). Restrictive eating disorders in higher weight persons: A systematic review of atypical anorexia nervosa prevalence and consecutive admission literature. International Journal of Eating Disorders: 54(8); 1328-1357.
Garber, A. K. (2018). Moving beyond "skinniness": presentation weight is not sufficient to assess malnutrition in patients with restrictive eating disorders across a range of body weights. Journal of Adolescent Health, 63(6), 669-670.
https://www.ncbi.nlm.nih.gov/books/NBK338301/table/introduction.t1/