Why we need to break the silence on eating disorders

Over the course of medical school, you are expected to get comfortable with a whole host of expensive-sounding equipment (see: popsicle stick becomes tongue depressor).

You sling a stethoscope around your neck, maybe tuck a reflex hammer in your white coat pocket, and begin that privileged journey of looking for things that don’t sound or sit quite right.

You learn rather quickly that it won’t be you on stage, and somehow, you landed a prized front-row seat on life. And when a patient’s struggle doesn’t play from out of a textbook, and there’s no fancy test to order, you realize it’s on you as the student to offer that tissue box.

The first time I had to pull a tissue out for myself was with the mother of a young patient. She had lost her husband to a motorcycling accident when her kids were quite young, and now, years later, her only daughter was in the psychiatric emergency room.

“She won’t eat, or she’ll throw up, or call me to tell me she’s gonna kill herself. There’s only me at home with her brothers, I’m close to losing my job and can’t speak to anybody about this. They just don’t understand. It’s like a cancer made up of guilt. We’re on a waiting list for her to get treatment, and she’s fighting tooth and nail to stay in university,” she said.

Her daughter was a straight-A student. She wanted to be a nurse. She was now in the fight of her life with a mental disorder that has the highest chance of death than any other.

When my shift came to an end, I decided to walk through the waiting area on my way home. I saw the patient’s mother trapped in a chair between her two young boys like bookends. They were restlessly pulling at an oversized jacket that I could only imagine was her late husband’s. All I could muster up was an apologetic nod, and stare at my feet as I head through the door.

Are we doing enough about an illness that is silently eating away at both a mother and daughter?

Twenty years ago, People headlined one of their covers with, “Princess Di: Struggle with Bulimia Brings a Puzzling Disease Out of the Shadows.”

You could only imagine the disdain of the Queen for her to speak of such a “grotesque habit.” Eating disorders still remain a private battle for millions of young women, and the faces of those affected are changing. We’d be downright wrong to frame it as a “rich, white girl’s disease.

As the debut track to her new album, Beyoncé Knowles hits back at the societal pressures on females in Pretty Hurts. The music video runs through a beauty pageant, and decided to showcase all the ugly things that go on backstage.

It’s a raw take on the eating disorder as a woman’s response to inequality. Yet you could also argue that the triggers and demands on females have never been worse (while also being sold the notion that the gender gap is under repair).

There’s still this, even when it comes to “the attainable Jennifer Lawrence.” There’s the pornification of pop culture. Then there’s Instagram and Facebook when it comes to body image. All this, and there’s still wonder as to why young girls are at war with themselves.

Besides the immense toll on women, the King’s Fund and other economists believe working societies have been paying the price when it comes eating disorders.

The calculations looked at health care costs and reduced GDP for missed workdays. The losses were staggering. But my question is this: How do you actually measure the lost human potential and ingenuity? This may be the biggest tragedy. For how do you capture the cost of subjecting millions of women to calorie counting? Or the religious scale stepping exercise that starts and ends one’s day? Filling a notebook with daily calorie projections isn’t a way for youth to learn arithmetic; it’s merely a method to siphon off talent.

In Canada, when it comes to the treatment side of things, Senator Kirby’s report, “Out of the Shadows,” paints the picture of a two-tier mental-health system that is ridden with stigma and grossly underfunded. That means a debilitating wait, or a serious financial sacrifice. In America, treatment options for a chance at recovery do not come cheap. And so, for these young women, it’s never really about having it all – it’s a matter of losing every single thing that’s ever mattered to them.

To be sure, changing the confines and construct of beauty is not going to happen overnight. But there might be some promise in the small victories. And we should at least be able to have the conversation, remove the shame and start investing the health care dollars needed to restore their lives.

The most powerful call to arms I have seen comes from a college student. Her poem, Shrinking Women, has gone viral and strikes at the heart of the illness. To know the disease is to know pain. And so maybe it’s not Beyoncé, but young women like Lily Myers that will lead the charge. It might be exactly what we need: less tissue boxes and more women grabbing microphones.

Andrew Boozary is a family medicine resident and editor-in-chief, The Harvard Public Health Review. He can be reached on Twitter @asboozary.

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  • DoubtfulGuest

    I hope doctors will add more information here about how eating disorders are diagnosed, and the resource limitations in treating them? Dr. Boozary, you make a good point that these diseases are not just a problem of rich white girls. I’m concerned that the medical community views them more as “women’s diseases” than they really are, with the stereotype that affected patients are shallow and appearance-focused. Statistics I’ve seen for men are anywhere from 10-35% of sufferers, which is a substantial minority. I’ve also read that there’s some evidence of genetic predisposition to these diseases and other organic (vs. psychosocial) contributing factors.

    I have kind of an odd (and poorly informed) perspective on this. I have a mitochondrial disease that was mistaken for an eating disorder to varying degrees by different doctors over many years. I’m female, 20′s to early 30′s at the time, and was way too thin until a few years ago when I started treatment for my disease. I had problems eating from fatigue and GI problems. I would often eat normally and still not be able to gain weight due to the metabolic biochemical defects. It’s something I have to manage, but it’s better these days.

    What bothers me the most about this experience was that some of my doctors apparently felt manipulated by me. I don’t have body image issues and was very consistent in stating that I wanted to put on weight. I was never able to have a productive conversation with any doctor about that until I finally got to see a neuromuscular specialist and another doc who specializes in inborn errors of metabolism. It was a big mess, and I don’t understand how they can diagnose an eating disorder correctly with that approach. I was never referred to a psychiatrist or anyone else to find out one way or the other. Doctors would just get really mad at me, cut me off when I tried to explain, and write things in my chart like “The patient tells me she is seeing a dietician and is eating 2,500 calories a day. However, she appears malnourished, with loss of subcutaneous fatty tissue…”

    Another thing I noticed is the doctors varied a lot in what they considered to be an okay weight. It seemed to be female docs who told me I was “fine” and male docs who recognized it wasn’t normal. But my sample size might be too small to make conclusions based on gender. Whatever the cause, it seemed very subjective on their parts. Regardless of what the problem turns out to be, there are often so many unspoken bad feelings about abnormal weight (too much or too little) and very little fact-finding or anything constructive. I would like to understand how this happens? Thanks.

    • SarahJ89

      Thank your lucky stars you were never referred to a psychiatrist. Once you get into the mill it’s hard to get out. It took me over 20 years to finally get my hypothyroidism diagnosed. Once treated, my “treatment resistant” depression disappeared within three weeks.

      • DoubtfulGuest

        Oh, I did seek mental health care on my own initiative. That was not part of any organized process to diagnose or rule out an eating disorder. The counselor I saw regularly and the psychiatrist who evaluated me one time were very helpful in reinforcing that there was much more than an emotional basis for my symptoms. I’m sorry you did not also have a good experience — I was briefly “in the mill” during my undergrad years so I know what you mean. I was under a great deal of pressure to try antidepressants back then and had adverse reactions to a few. Well, they happened to be ones that are contraindicated for mitochondrial disease. Imagine that, it wasn’t an attitude problem! I’m appalled they didn’t consider your thyroid much earlier. That’s just irresponsible, because it’s quite a common disease and affects everything about our health.