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Six years ago, I thought I knew pretty much all there was to know about anorexia. As the mother of two daughters, I knew it existed. Like most people, I thought it was an illness that affected only upper-middle-class white girls who were desperate for attention-starving for it. I thought parents of anorexic children were neglectful, self-absorbed, overcritical.
That's if I thought about it at all.
And then my older daughter was diagnosed with anorexia, and I learned just how wrong I'd been about pretty much everything. I learned that anorexia, bulimia, and other eating disorders affect young men as well as women, from all classes and ethnicities. I learned that all kinds of families found themselves struggling with anorexia: loving families and dysfunctional ones, neglectful and attentive families.
I learned that anorexia isn't a choice or a joke. That in fact it's a one-way ticket to hell, a hell made even worse by virtue of the fact that other people don't recognize it as suffering because they think, as I did, that anorexia is something you decide to do, not something that happens to you. That when people say, "I could use a little anorexia," they're speaking out of the same ignorance I shared, before anorexia became deeply personal to my family. Before it moved into our house, got into every closet and cabinet, infected all of us with its insidious illogic, its perverse and self-destructive poison.
I learned that anorexia is a mortal illness: about 20 percent of those who develop anorexia will die, some from malnutrition, some from suicide. That in fact it's the most lethal of the psychiatric illnesses, as well as one of the most misunderstood, not just by ordinary people but by doctors, therapists, psychologists, psychiatrists, which may explain why people who get anorexia often stay sick for a very long time, and why half of them stay sick, never really recover. People with anorexia bounce in and out of hospitals-three, five, eight times, over a period of five or ten or fifteen years, before they recover. If they recover.
I learned that unlike many other illnesses, anorexia has no clearly agreed-upon treatment. That in fact there's been very little research into treatments for anorexia, which means there are very few treatments that have been researched and tested through randomized double-blind studies, the gold standard of such research. Which means that a lot of treatment for anorexia today is just . . . guessing.
When my daughter got sick, my husband and I-like all parents in that situation-got a crash course in eating disorders. What we came to understand, and what we did about it, is part of the subject of my memoir BRAVE GIRL EATING: A FAMILY'S STRUGGLE WITH ANOREXIA, which will be released Aug. 24 by William Morrow. The book tells the story of our daughter's slide into illness and her infinitely painful climb back out again, and how we helped her make that climb. It also tells the story of the science behind both eating disorders and how they're treated, looking at neurobiology and psychology as well as physiology.
Over the next weeks I'll be blogging here about not just our story but the big-picture issues around eating disorders: what we know, what we think we know, what we don't know, and how it all affects people with eating disorders and the people who love them. My hope is that this blog will become part of a bigger conversation around these illnesses. Because one of the other things I learned about anorexia is that we don't talk about it enough. That there's still a lot of shame, blame, and stigma attached to the illness. And until we can talk about eating disorders the way, say, people now talk about autism, research will languish and families will continue to struggle along, ineffectually. And those with eating disorders will continue to suffer.
I look forward to the conversation. Stick around.
