Fighting the stigma of eating issues :: Interview with Aimee Liu

When Aimee Liu developed anorexia in the 1960s, very little was known about this devastating illness and much of her battle was fought alone. In our recent interview, she told me how she wrote her very first book, Solitaire, in an attempt to help her own parents understand the thoughts that filled her mind during her eating disorder. With even her own parents lacking the understanding of her disorder, it wasn’t necessarily surprising to Aimee that others couldn’t understand it either.

And we know that what we cannot understand, we often judge. And worse, we at times belittle and reject. People who suffer from eating disorders know this stigma all too well. They face it from friends, family members, medical professionals, insurance companies, and even themselves.

In reading Aimee’s newest work, I was struck by the theme of stigma that ran throughout the book. Restoring Our Bodies, Reclaiming Our Lives is a compilation of letters from individuals who have been at various stages in the process of recovery from eating disorders, supplemented with information from experts on various aspects of this process. In our interview, I asked Aimee to talk more about the stigma surrounding these disorders, as well as about what hope she sees.

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NTS: One of the themes in the book that stood out to me was that of stigma around eating disorders. How have you personally and professionally experienced this stigma?

Aimee: I find stigma to be a constant obstacle in the battle against eating disorders… I wrote my book about eating disorders, Gaining, to show how and why eating disorders are biologically based mental illnesses. But the stigma persists. Our culture absolutely insists on bathing the act of eating in judgment, so that eating too much or too little is inevitably treated as a source of pride or shame, and food itself is treated as an indulgence or punishment rather than as a basic necessity. The stigmatization and trivialization of eating disorders not only prevents sufferers from seeking treatment, but it also poses an obstacle to activism. I feel this keenly among family and friends who dismiss or ignore my writing about eating disorders.

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NTS: You talk about how external stigma (from insurance companies, the media, etc.) can mirror internal stigma. Can you explain this? How have you seen this played out?

Aimee: Mirroring is a two-way process. Most of us internalize the messages that surround us. That’s natural; it’s how we learn. And the earlier we’re exposed to these messages, the more deeply they’re likely to take hold of us. The marginalization of eating disorders makes it difficult to attract media attention or scientific attention to issues of prevention, treatment, or recovery. Instead, all public attention goes to the most extreme cases of starvation, bingeing, or purging, which in turn perpetuates the widespread myth that people with eating disorders are freaks or deviants who somehow bring their suffering on themselves.

This plays a large role in the intense shame that so many sufferers feel about their eating disorders, often so much shame that they are too embarrassed to admit that they have a mental health problem and need treatment. The complete lack of understanding about eating disorders in the insurance and much of the medical world then echoes the shame and confusion that the individual feels; those who are responsible for diagnosing, referring, and paying for adequate treatment too often view eating disorders as a problem solely of numbers on a scale — because that’s what the patients tell them and because this simple formula allows them to ignore (and, in the case of insurance companies, refuse to pay for treating) the real problem. We desperately need to expose medical doctors and the insurance industry to the truth about eating disorders.

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NTS: You’ve created a work that features stories of such hope. Why did you feel like it was important to share these?

Aimee: The flip side of the stigma that trivializes eating disorders is despair among those who experience these syndromes as anything but trivial. Many people feel trapped and hopeless because they are grappling with an illness that a) can take a long time to cure, and b) makes them feel completely isolated and misunderstood. Isolation is one of the most crippling aspects of eating disorders because it prevents sufferers from connecting with others who are healthy and/or getting well. The truth is that the vast majority of people with eating disorders do recover, but the lone individual battling the illness rarely recognizes this hopeful truth. So I felt it would be immensely valuable to collect verbal snapshots from ordinary individuals at every stage of recovery describing their personal experiences. This offers sufferers a kind of roadmap for their own recovery. I hope Restoring Our Bodies, Reclaiming Our Lives will protect readers against catastrophic thinking when they hit a bump and help them envision their own way back to health.

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NTS: You talk recovery as a process of restoration and discovery. How can individuals in the discovery process combat stigma?

Aimee: In the discovery phase of recovery individuals have the strength to raise their voices, tell the truth, and pursue their passions. They also have the power to stand up to the forces that contribute to eating disorders, one of which is stigma. This may involve something as simple as challenging a friend who says, “Oh, I wish I could be just a little anorexic.” Or it may entail more concerted activism, such as participating in a boycott or letter-writing campaign against food, fashion, or beauty companies that idealize emaciated bodies or supersized foods. There’s power in numbers, and more groups like the EDActivistNetwork on facebook are forming to lead the fight. The important thing is to be alert to the subtle messages that create this stigma, and confront them with personal truth.

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How do you combat stigma and discrimination – whether it’s against eating disorder, weight status, or other aspects of ourselves?