What I Wish Medical Providers Knew: Word Choice Matters
Usually when I see a physician I want the most straightforward, factual information regarding my physical health and treatment needs. I would like for support in emotional regulation and processing to come from seeing a therapist. Ideally, I could save guidance on my meal plan and movement for my dietitian and just go to my psychiatrist to manage my meds. In my ideal world, everything and everyone would have an individual purpose. And just as recovery isn’t linear-providers working in eating disorder recovery can’t function categorically.
Treatment requires a team approach and comfort among providers in sometimes having roles overlap. Some days a dietitian might be responsible for regulating a trauma response. Others may require a therapist to discuss heart rate, labs, or brain function. And oftentimes the physician may be in a scenario with the responsibility of processing emotions associated with weight, vitals, changes to meal plans, and discussions on level of care. As a medical provider treating patients with eating disorders it is important to understand that in this field, maybe more so than others, word choice matters.
Eating Disorders are Competitive
Eating disorders are one of very few illnesses in which a patient [initially] may not actually want to recover. Not only do they not want to recover, but the eating disorder develops in such a way that individuals often want to be the “best” in the eating disorder. This becomes particularly messy when looking at the eating disorder hierarchy that has developed (and is now prevalent amongst social media) wherein the diagnosis of anorexia nervosa is idolized and other diagnoses are viewed as a “failure”. In her book, I’m Glad My Mom Died, Jenette McCrudy describes her experience with both anorexia and bulimia as,
But deep down, I know the truth. The truth is that I wish I had anorexia, not bulimia. I’m pining for anorexia. I’ve grown humiliated by bulimia, which I used to think of as the best of both worlds. Anorexia is regal, in control, all-powerful. Bulimia is out of control, chaotic, pathetic. Poor man’s anorexia.I have friends with anorexia, and I can tell they pity me. I know they know because anyone with an eating disorder can tell when anyone else has an eating disorder. It’s like a secret code you can’t help but pick up on. (McCurdy, 2022)
Additionally, Mortimer (2019) found that the different diagnoses were associated with good or bad personality traits, creating a hierarchy where those with an anorexia nervosa diagnosis were viewed as morally better than those with bulimia nervosa. I suspect that this also applies to the subcategories of anorexia, as well as binge eating disorder. In this field you’re likely to be providing a diagnosis that comes with a significant amount of value and judgment attached.
When a doctor who was unfamiliar with my treatment experience (and with eating disorders in general) asked who diagnosed me and on what grounds because ‘my BMI does not indicate that diagnosis is correct**,’ all I heard was ‘you are a failure.’ In that one singular moment I regretted all of the work that I had put into recovering and questioned whether or not this was something that I really wanted to do. If you are working with a patient who has an eating disorder don’t compare them. Don’t compare them to the textbook definitions of diagnoses. Don’t compare them to other patients with the same diagnosis. Don’t compare them to who they were a year ago. Eating disorders are competitive and comparison only makes things worse.
Recovery Wins [can] Feel Like Failure
Similarly to how competition factors into the development and maintenance of the eating disorder, sometimes it is hard to celebrate recovery wins for what they are. What looks like a win to you may be incredibly threatening to the eating disorder and terrifying for your patient. This has been an important learning process with my own provider. When we initially began working together they would enter appointments with excitement for the opportunity to celebrate that I was making great progress in recovery, but all I heard was ‘you’re doing this too easily, you’re just faking it’, ‘this is happening too quickly, your body is going to change too fast’, or ‘if you recover you’re a failure.’ This internal eating disorder dialogue often convinced me to undo all of the work I had put in and that usually resulted in self-sabotaging behaviors.
So, how do you encourage a patient to continue in recovery or celebrate wins without triggering eating disorder thoughts? Initially, I could celebrate small wins (ie., I enjoyed a new food), but celebrating progressing toward recovery as a whole was too much. The eating disorder had too much control. I was still experiencing too much fear, guilt, and shame in CHOOSING to recover. As I’ve progressed and the eating disorder has less power, less control, I have slowly begun to celebrate recovery as a whole more frequently. We did this by developing the ability to celebrate having a good day, then several good days; and now, while it’s still dysregulating to hear that I am making great progress toward recovery, I have the skills to cope with this in a way that does not result in regular self-sabotage.
Don’t Deny the Patient’s Experience
Nobody knows your patient better than the patient themselves. Eating disorder diagnoses have increased 25% overall for youth ages 12 to 18 since the onset of the pandemic and despite the increase in prevalence, many pediatric and adult primary care providers lack training in identifying eating disorder symptoms. This lack of understanding makes sense given only 20% of medical schools in the United States offer elective eating disorder training and only 6% require training in the subject. However, this lack of understanding can have significant harm by unintentionally convincing patients that they are fine to continue to engage in eating disorder behaviors.
Having to prove to a provider that symptoms are real both invalidates the severity of the eating disorder for the patient and fuels the eating disorder’s need to find any reason to argue that ‘everything is fine’. This further solidifies the message that the patient is not ‘sick enough.’ Dr. Jennifer Gaudiani, author of Sick Enough and founder of the Gaudiani Clinic states,
One of the greatest and deadliest ironies of eating disorders is that the eating disorder voice often tells you, “You’re fine.” No matter what trusted and loved people in your life say how worried they are and point to evidence both physical and psychological that you’re not YOU anymore, the eating disorder voice whispers so convincingly, so cruelly, “Actually, you’re fine. There’s no need to let up on your rules. In fact, tomorrow let’s take it further.” Your mother might have been crying earlier that day about how worried she is, your therapist might be threatening to terminate the relationship unless things turn around, you honestly aren’t feeling that great, but just one call from one poorly informed doctor’s clinic that briefly tells you, “Your lab work came back, and it’s fine,” and BOOM, the eating disorder says, “See? I told you. Push onwards.”
The disorder will use any available evidence to prove to you that you’re fine: you’re still getting good grades, you’re still a star employee at work, your blood tests look normal, you get admiring comments from (terribly misguided) people on the street about how thin you look, you’ve seen sicker looking people than you online…or the greatest argument of all: you yourself have been sicker than this before (however you measure that), and see? You’re fine right now. (Hunnicutt, 2022)
When a patient presents with concerns about a diagnosed eating disorder, symptoms related to eating disorder behaviors, or even actions that you believe warrant further exploration for the possibility of an eating disorder, please take these concerns seriously. Don’t just dismiss them because their lab work or EKG comes back normal. Don't use current weight, BMI, weight loss, or weight gain as the sole basis for diagnostic determination or risk factors. Don’t tell them that in your professional opinion everything is fine because for someone with an eating disorder (diagnosed or not) these words can mean more than meets the eye.
McCurdy, J. (2022). I'm glad my mom died. SIMON SCHUSTER.
Mortimer R. (2019). Pride Before a Fall: Shame, Diagnostic Crossover, and Eating Disorders. Journal of bioethical inquiry, 16(3), 365–374. https://doi.org/10.1007/s11673-019-09923-3
**See part one of this series for more on why BMI is a harmful measurement and diagnostic tool.