Most People with Eating Disorders Don’t Look Like They Have Eating Disorders

With yesterday’s release of Netflix’s highly-anticipated film “To the Bone,” there has been significant chatter throughout the eating disorder recovery community regarding stereotypes and how people with eating disorders are often portrayed in media, particularly as they relate to weight.

The film, which I found to be deeply moving and infused with the type of dark humor that people who have been to hell and back can appreciate, tells the story of Ellen (played brilliantly by Lily Collins), a sarcastic 20-year-old artist suffering from anorexia. An issue many people have with it is that Ellen, who appears  frail and gaunt, fits the classic profile of what most people envision when they think of eating disorders, particularly ones based in restriction. Written and directed by Marti Noxon (of “Buffy the Vampire Slayer” and “UnREAL”) and based on her own experiences with anorexia and bulimia, it captures just one person’s story. And as the first feature film on eating disorders, it has the potential to start a long-overdue conversation on these prevalent but widely-misunderstood illnesses. The conversation is already underway, and it’s shedding light on an important point: Many people with eating disorders don’t look sick, even when extremely ill.

I know this because I’ve lived it. I’ve battled anorexia since I was 12, and over the past decade alone I’ve worn six different sizes. But weight, sizes, and numbers are irrelevant and insignificant here–what’s important is that the eating disorder was equally active and detrimental at my highest and lowest weights. It took a devastating toll on my health, and especially my heart, long before I hit a low weight. What I wish I’d known then is that OSFED (formerly EDNOS), a catchall diagnosis for numerous eating disorder behaviors that don’t seamlessly line up with anorexia or bulimia, is not only the most common but the deadliest eating disorder. People suffering from OSFED may not reach the point of emaciation, and thus are under-diagnosed and under-treated which can have lethal consequences. And that is something that I and many others with eating disorders wish the general public understood: One doesn’t have to be emaciated for it to be serious and life-threatening. Eating disorders are, after all, primarily mental illnesses.

MORE: Lily Collins Opens Up About Her Eating Disorder And “To the Bone”

For 10 years, I dismissed the gravity of my own struggle because early on, the only representation of eating disorders I was familiar with were the visually startling ones you’d see on talk shows or tabloid covers (lookin’ atchu, Dr. Phil), and that’s not what I saw in the mirror. (It’s also important to note that body dysmorphia often goes hand-in-hand with eating disorders.) But after enduring multiple hospitalizations and treatment programs, I learned there was, obviously, much more to it than how I looked–or how I thought I looked. Not only did I have to face the reality that I was gravely ill and lucky to be alive, I met countless men and women who were in the same boat. And the majority of them looked like any Joe or Jane Schmo you’d pass walking down the street and not think twice about: Some were underweight, sure; but most were of “normal” weight or overweight. I’ve met overweight patients who had to be tube-fed, and normal-weight individuals who had experienced heart attacks as a direct result of their eating disorder. The bottom line is that everyone’s experience is different, but we all had one thing in common: We were amidst a life or death situation, and didn’t feel we were sick or thin enough to deserve help. That very thought is not only potentially deadly, but a huge barrier to treatment.

With regard to restrictive eating disorders specifically, the risks are the same regardless of weight, Dr. Neville H. Golden, MD, Chief of Adolescent Medicine at Stanford University and a Fellow at the Academy of Eating Disorders told us. “Patients who are of normal weight but who have rapidly lost a large amount of weight are at risk for the same medical complications seen in underweight patients including vital sign instability, low heart rates, liver dysfunction, gallstones, amenorrhea in females and low testosterone levels in males, reduced bone mass and increased fracture risk,” he said.

What’s more is that up until recently, a person still had to be significantly underweight (at or below 85% of expected BMI) to meet criteria for anorexia nervosa as described in the DSM IV, which is basically the bible of mental disorders. But when it was revised in 2013, the weight requirement was eradicated because top researchers in the field found it did more harm than good.

MORE: The Moment I Knew I Needed Help for an Eating Disorder

“The removal of the weight cut-off in the diagnosis of anorexia nervosa has made a huge difference in allowing more people to receive the appropriate treatment,” said Dr. Golden. “Importantly, psychological distress experienced by those above and below this arbitrary cut-off is very similar.”

Walk onto any eating disorders inpatient unit and what you’ll find is not an army of stick-thin, white girls but a microcosm of greater society (who happen to be expert knitters and crocheters), which I think the cast of “To the Bone” illustrates quite well. We can’t always see an eating disorder, but that certainly doesn’t make one’s struggle any less valid or dangerous.

If you or a loved one are struggling with an eating disorder and are in need of support, please call the National Eating Disorders Association Helpline at 1-800-931-2237 or visit Project HEAL.