Breaking the Eating Disorder Stigma, One Story at a Time

In a multitude of ways, eating disorders express anxiety. If you have a history of eating disorders, you're likely sensitive and perfectionistic. When ill, you not only exaggerate the rightness or wrongness of numbers on the scale, but you may also imagine there's a right way and a wrong way to recover. Recovery's promise of change and potential for failure may loom as terrifying threats.

I've heard this from many readers who contacted me after the publication of my book "Gaining: The Truth About Life After Eating Disorders." Jessie, a young woman six months into treatment, wrote, "Recovery is a process and a unique journey for each person; I think that message needs to be shared more often, and can be a message of comfort for all those perfectionistic people in the midst of recovery who feel they are not recovering in the perfect way."

Many of the people Jessie alluded to have proven to themselves that they're "good at" eating disorders. With food restriction, they may experience a hunger high. With purging, they may go numb. With binge eating, they may zone out. Eventually, having dedicated their very identity to ED (pronounced "Ed," the name many sufferers give to the enslaving voice that eating disorders plant in their brains), many no longer know how to recognize, much less sustain, healthy relationships or more rewarding pursuits. This radical distortion of self-worth effectively enslaves an individual to ED. For those who are in the grip of their illness, health can seem an impossible goal.

Yet the majority of letters I've received prove both that recovery is possible and that it must be different for everyone. While people who are gravely ill with an eating disorder often bear an alarming resemblance to each other, those who recover do so, in large part, by exploring their own unique ways of talking, acting, thinking, feeling, and looking -- both at themselves and to the world.

This can be disturbing news to those who cling to a single rigid standard of perfection, who are so fearful of making a mistake that they dare not entertain more authentic and promising dreams. But fear thrives in the abstract. The concrete example of individuals who've moved through and beyond an eating disorder beats back fear by engendering hope.

Instead of balking at the overwhelming complexity and uncertainty of life after eating disorders, those who have hope begin to imagine themselves striking out, making free choices, and discovering their true appetites. As conversations about recovery deepen, so does the sense of personal possibility. I've witnessed this change often in my correspondences with readers over the past few years. By the hundreds, they support my contention that eating disorders are like a gun that's formed by genetics, loaded by culture and family ideals, and triggered by unbearable distress. However, the letters bear out this metaphor with stunningly unpredictable examples.

One letter came from a woman with an eating disorder who's never seen a fashion magazine and has no idea what Mary Kate Olsen or Nicole Richie look like because she's been blind from birth. Another recounted how the shock of change can trigger relapse:

After pregnancy had, I thought, cured me of eating disorders, mine resurfaced shortly after Hurricane Katrina. I stopped eating when it became clear that we were going to be displaced for a while, and I lost more than 10 pounds during the six weeks of our evacuation in Houston. Many things I thought were completely unrelated to my food issues are connected.

Several letters contained family histories of eating disorders that began with grandfathers who continued restrictive eating patterns after being forced to starve during the Holocaust. Others traced the patterns of weight-obsession to fathers and brothers who were bodybuilders and wrestlers. One woman realized in the course of our correspondence that, when she was little, her father used to excuse himself every night during their after-dinner walks to vomit by the side of the road; his eating disorder was never diagnosed, but she'd been struggling with hers for years and only now connected the dots.

As I was researching "Gaining," I discovered the enormous strides science is making both to identify the root causes of and to develop effective treatments for eating disorders. We now know that, globally, millions of women -- and men -- of every age, class, race and culture suffer from these biologically based mental illnesses. All eating disorders can be fatal, and the longer they persist, the more damage they do to mind, body and spirit. Eating disorders have a higher mortality rate than schizophrenia, alcoholism, or depression. Yet eating disorders receive only a fraction of the research funding that goes to these other conditions. And in most regions of the world, private insurance and government funding for treatment are not adequate to support the specialized care required to cure these illnesses. Why? The answer, in a word, is stigma.

The stigma that surrounds eating disorders paints them as trivial "girl problems," diets gone awry, adolescent rites of passage, or the acting out of juvenile rebels or "control freaks." Anorexia, bulimia and binge-eating disorders are sensationalized by the media as celebrity spectacles. Even the medical profession, by and large, still dismisses disordered eating as a behavioral quirk and thus fails to recognize the serious psychological threat this behavior represents. Stigma suppresses funding and attention to eating-disorder research and is a primary obstacle to adequate treatment and prevention efforts.

The truth about eating disorders is more complex, more fascinating and far more serious than most people realize. But those who have recovered realize it. Recovery gives us a golden opportunity to tell this truth, to voice our stories, and to break the stigma that surrounds one of the most disabling illnesses of our times.

I hope to inspire just this sort of activism with this blog.

*This blog is adapted from my new book RESTORING OUR BODIES, RECLAIMING OUR LIVES