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.


Anonymous said...

GO KITTY!!! What a great girl! Thank you from the bottom of my heart for sharing your story. It really meant the world to my daughter (who is in 16 and in recovery from AN) to feel understood.

Anonymous said...

!!!!!!!!! BRAVO !!!!!!!!!!!

Anonymous said...

YES! Absolutely!

Jasclo said...

I just read your story in the NYT magazine, then went looking for a way to contact you to say what a wonderful job you did. With the story and with what you and your husband did for your daughter. My god, what courage it took on your family's part.

Good luck to you. I hope Kitty continues to get better every day. I will be rooting for her.

Harriet said...

Thank you so much. It means a lot to me as Kitty's mother, but also on behalf of all the children and families who suffer from this disease. I wish for all of them health, strength, and a chance to live the lives they're meant to.

Seeker said...

Seeker said...
These stories do need to be told, as there is still a lot of ignorance on the subject. Why should your daughter be ashamed? It is an illness just as much as chicken pox is!

I too came to your site via the NYT article (which I got from NHS blog doctor). My daughter was anorexic and we attended the Maudsley back in 1996, although not for very long. You can read my full story in my blog.

I wish your daughter a long and happy life.

Harriet said...

Hi Seeker,

It's good to hear that the article is on the NHS blog doctor and is getting around. I wonder if you Brits are just more enlightened than we are when it comes to anorexia? Maybe because Maudsley was developed in England. In any case, it still seems to be big news on this side of the pond that anorexia is not a control issue.

HikerRD said...

I just found your blog and what a find! I will link it to mine and send my patients and their parents for your clear, refreshing perspectives. Looking forward to now getting your book.

Lori Lieberman, RD, CDE, MPH, LDN

Anonymous said...

Thank you so much for your work
Our daughter is newly diagnosed- a graduating senior in high school- who once aspired to go to college but is now rethinking everything- I don't think that those on the outside can begin to comprehend what it is like to approach every meal, every bit of food preparation with trepidation
I do have hopes for a better future- and it helps enormously to read about brave souls such as your daughter and yourself

hopeful in California