A young woman I didn’t know died last week. She was bright and talented and had many interests—acting, writing, music. She wanted to teach and have a family when she grew up. Only she’s never going to grow up.
I didn’t know this young woman, but I know the kind of disease that killed her, because it nearly killed my daughter. We don’t talk about these illnesses much. We don’t talk about the fact that one of them is the deadliest psychiatric disease, or that it kills 20 percent of its victims and makes life hell for the other 80 percent—for a year, for five years, forever.
We don’t talk about it because so many people still think that people with these diseases are spoiled rich kids acting out, looking for attention, or trying to punish their parents. They think these illnesses are a lifestyle choice, and they can’t imagine why anyone would choose it.
The diseases are eating disorders. The reality is that people don’t choose them and can no more choose to recover from them than you can choose to cure yourself of cancer.
I don’t know this young woman’s family, but I know something of what they’ve gone through, because our family went through it, too. Lots of families in my community have gone through it, but few will talk about it. They don’t talk about how an eating disorder steals a teenager’s life, or how insidious it is, and they sure as hell don’t talk about how deeply ashamed and guilty they are about their child’s illness.
There are doctors and nurses in my community who still blame families when a child has an eating disorder. Who will tell you, with a look of disdain, that you did this to your child. You’re the reason your child weighs 70 pounds and is too weak to sit up in bed. You’re the reason your bright, charming, funny child can do nothing but shake and cry and still, even though she’s starving to death, cannot eat. You're the reason your National Merit Scholar throws up everything she eats. It’s because of you that your child has died, because you’re too smothering, too cold, too enmeshed, too anxious, too controlling, too permissive.
The latest research on eating disorders clearly shows that genetics and biology are the biggest risk factor for an eating disorder. But we as a society haven’t caught up to scientific reality yet. We still blame families, the way we used to blame them for autism and schizophrenia and homosexuality. We still brand them with a devastating stigma.
And as long as this shame and stigma prevail, other young women and men will suffer and die. We need more effective and more evidence-based treatments for eating disorders, and one reason we don’t have them is because so little research has been done. And one reason for that is that so few parents are able or willing to step up and become advocates for their children. The stigma and shame are too great.
We can do better than this. As a community, we can come together around a family struggling with an eating disorder the way we come together for families struggling with cancer or other terrible illnesses. Our children need compassion and empathy. They need us to understand that they don’t choose to have an eating disorder and they can’t unchoose it. They need and deserve better treatments and more understanding.
I cried when I read this young woman’s obituary. I cried for a girl I will never know. I cried for my daughter and for all the young women in this community and elsewhere who are battling the demons of an eating disorder.
My tears won’t change a thing. But I’m hoping my words will change the way you think about anorexia and bulimia. And the next time you hear about a child who’s been diagnosed with anorexia or bulimia, instead of wondering what went wrong in that family, you’ll wonder instead what you can do to support them through the most terrible and difficult time of their lives.
