What We Want You To Know About Eating Disorders

It is Eating Disorder Awareness Week, a week dedicated to reminding the world that eating disorders are incredibly pervasive, though most go unseen and undetected due to misinformation about them. Eating disorders are in your living room, your friend groups, your classrooms and your workplace, regardless of whether or not we recognize them as such.

In honor of Eating Disorder Awareness Week, we offer the thoughts below to all who need to know that their eating disorder has been real and they deserve to heal, despite dominant paradigms that won’t die and organizations that won’t change.

What We Want Everyone to Know about 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. And even more struggle with a subclinical eating disorder, meaning they don’t meet diagnostic criteria but their struggle is still significant. There are so many myths and misconceptions about eating disorders, so let’s first look at some eye-opening statistics from The Marginalized Voices Project that Marcella Raimondo, PhD, MPH wrote about in a 2019 article:

• 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.

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. When people think of the words “eating disorder” they 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. And because these people are not being adequately met by the eating disorder treatment world, it means that people suffer needlessly because the field struggles to evolve. It is an understatement to say we have a long way to go to change the conversation and increase treatment efficacy.

Here’s are 10 things we want you to know:

1.

You cannot tell by looking at someone if they have an eating disorder, nor can you tell what type of eating disorder a person has based on their weight. Eating disorders affect people of every size, gender, age, race, ability, and income level. They are not limited to thin white cisgender women.

2.

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. We have several resources on our website to learn more about what is currently (and terribly) called “Atypical Anorexia” or “Higher Weight Anorexia”. In May 2021, Supermodel Tess Holliday challenged the cultural narrative about what size bodies have restrictive eating disorders when she spoke out about her Anorexia diagnosis on Good Morning America. We’ve seen how hard it is for our clients to reckon with this diagnosis given the misconceptions out there, and more stories are needed to help people better understand their struggles to heal. Unfortunately, many fat people who have been living with anorexia believe they are just failed dieters, or that the times they do eat normally are a “binge”, so they believe or are wrongly diagnosed with Binge Eating Disorder. More attention needs to be paid to anorexia in high body weight people.

3.

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.

4.

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. We are deeply concerned that behavioral weight loss was, and still is, a common treatment for BED. A focus on weight loss is contraindicated for anyone with an eating disorder, present or past, and this does not exclude people with BED. It is all too common for helping professionals in the eating disorder field to say they specialize in eating disorders and weight loss. This is stigmatizing and should absolutely not continue.

5.

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. It is fairly common for restrictive eating behaviors to begin around this time, setting the person up for a lifetime of disordered eating and weight cycling. 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.”

6.

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).

7.

Every organ in the body is impacted by an eating disorder and many physicians do not have adequate training to recognize, diagnose and 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 includes 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! Weight loss should not be congratulated in medical settings (or any setting for that matter) because you never know when you may actually be reinforcing an eating disorder.

8.

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 towards 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.

9.

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 persont—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 considered the standard of care, it is hardly accessible to all due to cost, time, and availability of treatment that isn’t harmful. People with marginalized identities will likely do best with treatment providers who have shared identities.

10.

It is not uncommon for people to need a higher level of care to help with eating disorder recovery whether that be inpatient (hospital), residential, or an intensive outpatient program, but accessing care can be next to impossible for poor, working class and uninsured folks. Treatment philosophies vary widely and it can take time to find the right fit. Because eating disorder organizations and treatment models have deep roots in white dominant culture, 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. When there’s a potential for more harm, we often take a harm reduction approach. Gloria Lucas of Nalgona Positivity Pride has written about and regularly offers webinars on harm reduction and eating disorders. And 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.

Affluent thin white people are dominating the ED field and determining what research questions get asked and funded, and they also tend to be the ones interpreting the data coming out of these studies. The field is missing out on so very much. Equity and inclusion will only improve patient care and treatment outcomes by helping us think outside the box, better interpret the data we do have and identify the questions that need to be asked in the research going forward.

If you are struggling with an eating disorder, we want you to know recovery is messy. It takes many people years and years to have a better relationship with food and their bodies, in part, because of systemic oppression and the ways society upholds and reinforces performative, disordered relationships with food, movement, and the body. 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.