Thursday, November 30, 2006

Why talk About Anorexia?

Last Sunday I published a first-person account of our family’s year-long efforts to refeed our 14-year-old anorexic daughter. Since then I’ve been taken to task in the blogosphere for publishing the personal and often harrowing essay.

I was accused of violating my daughter's privacy, of writing something that would haunt her for the rest of her life; every boyfriend and potential boss, goes the accusation, will now know intimate details of her life. How could I, or any parent, reveal such details? Maybe, she suggested, I was getting back at my daughter in a passive-aggressive way for the hell she'd put us through last year.

I considered the criticism honestly and thoughtfully. And I want to explain why I did what I did. Not just for me, because I'm just one mother telling one story. I want to explain this for all the mothers and fathers out there whose children struggle with mental illness, whether it's anorexia or schizophrenia or dyslexia or ADD or bipolar disorder or an as-yet unnamed malady that affects their child's brain, mind, thinking, and behavior.

What all of these have in common is that they come with a deep and abiding sense of shame and stigma. Every parent knows the feeling; it’s a question of degree. When you see or the world tells you that there's something wrong with your child, and that it's possibly, even probably, your fault, your instinct is to cover it up, hide it, put a lid on it and a hood over its face. Don't talk about it. Don't ask about it. Just accept the verdict and do the best you can.

But I believe with all my heart that if we are quiet about our children's illnesses, if we act as though there is something shameful about them, if we slink around and hang our heads and speak in hushed whispers about the agonies our children are going through, then we are not doing our job as parents. If we put Privacy with a capital P above the real true needs of not just our children but everyone's children, then we are failing them and we are failing the greater community that we inhabit.

As one eating disorders expert told me, "The reason there's not more research on anorexia is that there's no strong advocacy group pushing for it. Look at the autism parents—look what they've accomplished by putting it out there."

When we say yes to shame and stigma, we consign our children to years of suffering a kind of torture we can only imagine—we don’t want to imagine. We doom them to live terrible half-lives and to die of starvation or exposure or by their own hand. We send them to hell with our pious words and our respect for their Privacy.

I will not do this.

I wrote the article with the permission of my daughter. It is true that she was ambivalent about it. She worried about losing her privacy and feeling exposed. But she overcame those fears because she wanted to help others who were going through what she'd gone through. She wanted to save other lives. She is a generous and good and brave person, my daughter, much braver than anyone else can truly ever know. She was willing to put principle and habit and fear aside for the chance of participating in what we call tikkun olam, repair of the world, the opportunity to heal some small portion of the tear at the heart of the world. Her recovery is in large measure her own doing—with our support and love.

I call that heroism. And I honor it by telling her story and the story of thousands of others like her.

As long as the forces of shame and stigma and conformity press us to shut up, sit down, be embarrassed, we and our children will continue to suffer and, yes, to die, in silence and misery.

I call that stupid.

Sunday, November 26, 2006

Love as Part of Recovery from Anorexia

I've been completely overwhelmed by the outpouring of emails I've received since my New York Times Magazine article appeared yesterday ("One Spoonful at a Time," Wow. It's an incredible feeling to be so connected with so many people who have shared the same awful and misunderstood experience.

I want to share one of those emails with you, because it moved me so much. The author has given me permission to excerpt it here. The notion that a parent or other close relation's love and caring are a vital part of recovery from anorexia feels absolutely true to our family's experience.

I'd love to hear what other people think about this.


Hi, Ms. Brown,
I’ve just read “One Spoonful at a Time,” your article in the NY Times about refeeding your daughter, and her long recovery from anorexia nervosa. As a teenager—also 14—I was anorectic, and the memory of the first milkshake my mother asked me to drink is still vivid, a full-body memory. I’m writing as a former sufferer of anorexia nervosa to provide a kind of confirmation of the wisdom of the Maudsley approach, which my parents had never heard of, but which mirrors their approach to helping me escape the grip of the “demon” you describe so well in your article.

Over the years, I’ve tried to figure out just how I escaped anorexia. Two things stand out, and I was amazed to find both addressed very clearly in your article. First, I was simply exhausted by what you’ve called the anorexia demon—the obsessive thoughts about food, about how fat I was, about how undisciplined and grotesque I would be if I gave in and allowed myself to gain weight. I ran three to four miles a day just to keep that demon at bay. I was never as open with my parents as your daughter has apparently been with you, but if I had been, I’d have said precisely the things that you report in your article. I knew what was going through my mind would seem absurd if I revealed it, so I kept it to myself, sometimes completely convinced that I alone knew how true it all was, sometimes not so sure, but always, always fatigued by it.

More importantly, I was deeply affected by my mother’s sense of urgency about my need to eat. Your description of the frustration, fear, and anxiety you’ve experienced as you’ve tried to help your daughter recover is very familiar—I’m sorry to say that my mother went through something very similar with me. The full-body memory I mentioned above is not so much of drinking the milkshake, but of the experience of taking it from my mother’s hands, her presence, her watchfulness, all of which were, in comparison to my masochistic inner voice, so gentle and nonjudgmental. Her concern, and the patient but steel-willed lovingness that went into each milkshake, did the demon in. If you’re ever tempted to believe that your daughter isn’t aware of and grateful for all you and her father have done and continue to do to help her, please think again. I’m not sure how else to put it. And now, over 20 years later, it’s easier for me to admit that on some level what I really needed most was for someone to show that she cared that much, and that her caring was stronger than my self-hatred. I’m not sure why—my parents were always loving people—but maybe it’s just that, once self-imposed starvation really sets in, an opposite and greater-than-equal reaction from a firm, compassionate outside force is required to overcome it. Showing your daughter that you care, that you’re concerned--so much so that you’re not going to back down until she’s regained her health and vitality--is what makes the difference. If that’s the core of the Maudsley approach, I’m sure further tests will continue to reveal its effectiveness.