What We Want You To Know About Eating Disorders
There’s a lot of work the eating disorder field needs to do before we better serve the diverse community of people who suffer with eating disorders around the world. It is innaccurate and problematic that when we think of the words “eating disorder” we are still more likely to conjure an image of an emaciated, white, cisgender, female body rather than a trans body or a Black body or a fat body. There are so many stories missing. Here are just a few statistics from The Marginalized Voices Project that Marcella Raimondo, PhD, MPH has written about:
“This project is confronting the prevailing myths about who struggles with eating disorders, underscoring that everyone’s experience is equally as valid and deserving of care and recovery.
- Black teenagers are 50% more likely than white teenagers to exhibit bulimic behaviors, such as bingeing and purging.
- A 2014 study found that rates of disordered eating have increased across all demographic sectors, but at a faster rate in male, lower socioeconomic and older folks.
- Transgender college students were significantly more likely than members of any other group of college students to report an eating disorder diagnosis in the past year – 2015 study.
- Teenage girls from low income families are 153% more likely to struggle with bulimia than girls from wealthy families.
- Only 20% of those with eating disorders fit the “emaciated body” stereotype.”
Eating disorder organizations and treatment models have deep roots in white dominant culture. Accessing treatment is next to impossible if you are poor, uninsured or fat. Staff at treatment centers are often not adequately prepared to meet the needs of a trans person, Black person, or fat person with an eating disorder, and so there is a risk of causing more harm than good. FEDUP Collective recently put out An Open Letter to Eating Disorder Organizations and Institutions with a list of actions needed to fight eating disorders in underrepresented communities. And the #AmplifyMelanatedVoices campaign also had several calls to action asking us all to do better.
In the eating disorder treatment world, there is a concern that folks who meet the traditional diagnostic criteria for anorexia will be forgotten – or their treatment will suffer – if more inclusive perspectives and modalities become available. This could not be further from the truth. The dissenting voices questioning the validity of “social justice approaches” never acknowledge the harm that comes from not considering inclusion while prioritizing personal interests.
We believe inclusion will only improve patient care and treatment outcomes for the 70 million people who suffer with eating disorders worldwide. Inclusion will help us better interpret the data we do have, and identify better questions to ask in the research going forward. The statistics above show that affluent white people aren’t the only ones who have eating disorders. But if affluent thin white people are dominating the field and determining what research questions get asked and funded, and they are the ones interpreting the data coming out of these studies, then the field is missing out on so very much.
It is important to note that inclusion is not simply an act of improving diversity. Inclusion is developing and co-creating programming, practices, processes and services specifically for and with people who have not otherwise been included.
There’s a huge difference between “all are welcome here” and “this was created with you in mind”.
– Dr. Crystal Jones
It is an understatement to say we have a long way to go to change the conversation and increase treatment efficacy. Because there are so many myths and misconceptions about eating disorders, we have assembled a list of 10 things we want you to know:
- You cannot tell by looking at someone if they have an eating disorder. Eating disorders affect people of every size, shape, gender, age, race, and income level. They are not limited to thin white cis women.
- Weight is never the best indicator of eating disorder status, although these things are commonly conflated. We know, through clinical practice, that fat people can have extremely restrictive eating patterns and would meet criteria for anorexia nervosa despite the diagnostic criteria mentioning “underweight” as a feature of anorexia. This article (which links to a valuable podcast interview with Body Trust Provider Dr. Rachel Millner) discusses “Atypical Anorexia” (terrible label) or “Higher Body Weight” Anorexia which needs more understanding and attention.
- Body shame and/or a preoccupation with the thin ideal are not at the root of all eating disorders. Eating disorders are complex bio-psycho-social conditions that develop to help the person cope and survive in a body oppressive world. ALL COPING IS ROOTED IN WISDOM.
- Binge eating disorder (BED) is the most common of all eating disorders and has only been recognized formally as an eating disorder since 2013, thanks to the advocacy work of Chevese Turner and the Binge Eating Disorder Association. BED is the eating disorder most commonly seen in cisgender men. Behavioral weight loss was, and still is, a common treatment for BED and this is so harmful. A focus on weight loss is contraindicated for anyone with an eating disorder, present or past, and this does not exclude people with BED.
- Dieting is a risk factor for an eating disorder. The younger a person starts dieting, the more likely they are to develop an eating disorder (Neumark-Sztainer, 2006).
- For people who menstruate, the onset of menses and menopause may be the highest risk times for the development of an eating disorder. In preparation of the onset of menses, a young person gains 15-40 pounds. The individual, their parents and the medical community often pathologize this normal, natural change in body shape and weight. Restrictive eating behaviors often begin around this time, setting the person up for a lifetime of weight cycling and/or disordered eating. People going through menopause also receive negative messages about the protective weight gain that happens during this period of life. Margo Maine says “Instead of thinking of this as our spare tire, we need to think of it as a life preserver.”
- Every organ in the body is impacted by an eating disorder and many physicians do not have adequate training to provide the kind of care someone with an eating disorder needs. Look for providers that specialize in treating eating disorders, and be prepared to educate a physician if you cannot find a specialist. A basic physical exam for people with eating disorders should include orthostatic vitals (heart rate and blood pressure measured lying down and standing), blood work to check for electrolyte imbalances (and elevated serum amylase if purging), urine specific gravity (to check for water loading), and blind weights. Patients should be protected from seeing their weight while being taken, as well as on the after visit summary or their online medical record. Blacking it out on a printout with a permanent marker is not enough!
- Orthorexia, an obsession with food quality and purity, is recognized by most providers in the eating disorder treatment community but currently does not have diagnostic criteria in the DSM-5. Research is currently being conducted on this preoccupation with healthy eating. Some with a recognized eating disorder pass through orthorexia as they move through healing.. Given our society’s obsession with the pursuit and performance of health and “clean” eating, it can be hard for both patients and providers to see this kind of eating as disordered.
- The standard of care for eating disorder treatment is to take a “team approach”. The treatment team typically includes a physician, psychiatrist, dietitian, and therapist, all of whom specialize in eating disorders. The physician monitors for medical stability. The psychiatrist manages and monitors medications. The dietitian works to increase access to food, normalize eating behaviors, improve the relationship with food/body, and challenge eating disorder thoughts. And the therapist helps address underlying mental health issues, works with trauma, and supports the changing relationship with food and body. Sometimes several therapists may be working with one patient—one for individual therapy, one for family therapy, one specializing in trauma, somatics, and so on. Ideally, the treatment team communicates regularly to keep each other in the loop and make sure the patient is receiving consistent messages across team members. Even though this team approach is a standard of care, it is hardly accessible to all due to cost, time and availability of treatment that isn’t harmful.
- It is not uncommon for people to need a higher level of care (HLOC) to help with eating disorder recovery. This treatment could be inpatient (hospital), residential, or an intensive outpatient program. You can read more about the different levels of care here. Treatment philosophies vary widely and it can take time to find the right fit. There is a lack of treatment centers that can competently meet the needs of fat, BIPOC, trans and non-binary people, and poor people with eating disorders, so if there’s a potential for more harm, sometimes we take a harm reduction approach. Gloria Lucas of Nalgona Positivity Pride regularly offers a two part webinar series on harm reduction and eating disorders.
Living in a world that is so traumatizing and disembodying, it should be no surprise that at least 70 million people worldwide suffer with an eating disorder. Recovery is messy. So. Very. Messy. It takes many people years and years to have a better relationship with food and their bodies, in part, because the culture upholds and reinforces performative, disordered relationships with food. People will wander away from treatment and then return. And until the eating disorder field – and the world at large – becomes more equitable and inclusive, this is likely not going to change. We can and must do better.
We have included some additional links to some articles that can expand your learning:
Thanks so much for reading.