Thursday, November 08, 2007

What we all can do

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.

16 comments:

Rachel said...

I wholeheartedly agree with the thrust of your post, but I would add that it isn't just anorexia that isn't discussed - at least constructively, that is - it's also bulimia, and other eating disorder issues.

I find that anorexia is often the most discussed of the eating disorders, despite the fact that ALL eating disorders carry very real and immediate physical risks, including death AND despite the fact that bulimia often eclipses anorexia four to one. I think this is due to our glamorization of the disease, and the stereotypes of those who have it - what I call the "damsel in distress" factor.

But when I say anorexia is the most often discussed ED, it isn't as if the discussion is constructive or enlightening as to the true nature of the disease. Most often, stories addressing anorexia gloss over the dangers associated with the disease, and often provide those with step-by-step directions on how to be anorexic. There was a study done on this recently by two researchers at the University of Alberta.

mary said...

I think that the helplessness we feel is that we didn't know, so we couldn't reach out offer another path. Sometimes though even when we shine that light it's not bright enough.
What a shame that the Dr's. who treated her didn't know about it...a way to really help a person back towards wellness. It offends because we expect more from them, as it should be. We are mere lay people yet our expertise and understanding surpasses that of many in the medical world with degrees.
This is so hard though. So so hard.
My recovery candle will be lit again. Hope that little girl is at peace.

Anonymous said...

Thank you for this post, Harriet. I think I read the same death notice that you did. What a heartbreaker.

Anonymous said...

Thank you for this. It is sadly so beyond true. I have a lot of trouble calling my own behaviors eating disorder because I never fit all of the diagnostic criteria, despite the fact that I did not eat. The same goes for my best friend, who struggles with bulimia...so much of the time we call it "the throwing up thing" because we almost can't deal with calling it what it is, as if we should be ashamed.

People like you are helping, little by little, to change things. I hope that this poor girl has finally found peace and joy, and that her family will find it eventually as well.

Harriet said...

True, true, Rachel. I have amended my post to be more inclusive. The mortality rate for anorexia is higher but there's no limit on the suffering quotient for all e.d.s.

Mary, I think her doctors did know--I just think the medical establishment has a long way to go when it comes to treatments that work. NIMH recently did a study on bulimia treatments and the Maudsley approach proved highly effective. I think CBT has been effective for some people too. What bugs me is the doctors who say things like "Just eat!" or "Just stop throwing up!" or who send patients to useless psychobabble therapy. (Note: I am a big fan of therapy. When it's appropriate and effective. Not when someone is starving to death or compulsively vomiting or exercising. Then I think you've got to get the physiology under control before therapy can do any good.)

And to the two anonymous posters, thank you for reading. I hope you carry on the message to others. The more we talk about these things openly, frankly, and without shame, the better.

Loretta Dion said...

What a wonderful post. It's all so very true and timely. Thank you.

A said...

this just breaks my heart. I'm gonna put a link on my blog to this post because it needs to be said over and over again until this issue is discussed and heard.

tori_927 said...

I just wanted to say hi. I stumbled across your site and I think it's really informative and impowering. I'm 18 years old and I was diagnosed with anorexia a year ago. I have a blog: Http://tori927blog.blogspot.com

Anyway, just wanted to say hi and let you know that I plan to keep reading.

Crayons said...

Hi Harriet,

I read your editorial in the Capital Times today. It was well reasoned and well written. I have known four women suffering from anorexia. Since I am on the opposite end of the scale (an XL woman), it was difficult for us to really see each other. We activated terror in each other.

I recently came across an issue of Time magazine from 1979. The cover featured anorexia nervosa (with a pronunciation guide). Now, 25 years later, it seems to have become an accepted part of popular culture. The alarm in the 70s has morphed into an attitude of near complacency: "Some girls just go overboard."

I very much appreciate your point that there seems to be a genetic link involved. I also see the extrapolation from the near impossible images of "beauty" in the media. Friends from developing countries are shocked to see the manifestation of this illness... disorder... disease... Which is the correct category?

Have you ever published a list of things to do/say and not do/not say when someone you love is in the clutches of anorexia?

Keep up the great work.

Maya's Granny said...

For over ten years, I worked as a parenting coach. In that time, I often worked with the parents of girls with anorexia or bulimia. No one that I ever heard about knew what to tell them. No one that I ever heard about knew what the girls or their families could do. It was heart breaking -- usually I could offer information and techniques that would make life easier for a family. All I could do in these cases was provide a place where the parents could talk and cry and not be judged.

As a fat woman, all of my experience had been in the other direction as a teen. Hiding that I was eating, not hiding that I wasn't. But, I could understand that the relationship these children had with their bodies and food was highly dysfunctional and could not be either their fault or that of their families.

I grieve for every girl who suffers through this and for her family.

oscah said...

I just want to tell you how much I love your writing, especially the article you wrote about re-feeding your daughter, here: http://www-news.uchicago.edu/citations/06/061126.legrange-nyt.html

I've read it multiple times and it's never failed to move me. I'm so glad she's okay now. It must have been horribly hard for all of you. I have had anorexia twice and I can only imagine how it must have felt to my mother to see me wasting so fast.

Harriet said...

Hi Tori,

Welcome. I hope you have caring adults in your life who can help you with the eating disorder. You deserve a full recovery, and it's terribly hard to get there on your own. Let me know how I can help you.

Crayons, good idea. I'll work on that.

Maya's Granny, I think disordered eating causes pain and suffering on all parts of the spectrum. I feel for what you went through, too. I went through some of that myself as a young woman.

Oscah, welcome! Empathy is good but I hope you aren't wasting any time feeling guilty. You had an illness like any other and it was *not* your fault. Your parents love you and I'm sure are thrilled that you're doing better. Let me know how you're doing if you feel like it.

oscah said...

Thanks for the welcome, Harriet! Unfortunately I am doing better only in that I am no longer underweight, have had regular periods for years now and do not diet or calorie count these days. My head is as eating disordered as ever, though, and I'm still completely obsessed with weight, embarrassing as that is to admit. However, I do think my family's anxiety has been eased by the fact that I no longer practice most eating disordered behaviours, though they know I'm not truly mentally healthy.

I can't help but feel guilty in some ways that I've been the cause of so much anguish. However, I also do know that the ED wasn't my fault and is most probably genetic- there's a very strong family tendency in my case, plus my very first, half-playful diet at 13 immediately flicked on some sort of switch. That kind of reaction to the kind of less-than-serious diet that my peers would fall off in under a week to me suggests a predisposition.

I was very happy to read that your daughter is now well and have thought of her often since reading your piece- how is she doing these days?

Thank you again so much for your warm words.

Anonymous said...

I cannot find the words to express my graditude for people such as yourself. I'm a 14 year old currently recovering from anorexia; luckily, we caught it early, and were able to successfully treat it. I am honestly able to say that I am the last person I would ever think to have such an illness. I hope to one day become an advocate so others need not befall this same fate, which our society seems to so easily harvest.

Harriet said...

hi oscah,
thanks for asking about my d. (and sorry for the long delay in answering.) she is doing very well. she's been weight restored for a year and a half now and is happy, healthy, and engaged. i think of her as recovered-for-now. i'll feel a lot more secure once she's in her mid-20s, i think.

anonymous, welcome to you. i hope when you say "we" you're talking about family--i hope they're right there beside you every step of the way. this is a battle that shouldn't be fought alone. i wish for you what i wish for my own daughter--to be healthy and happy and to have your life back. good luck to you.

Sarah Owens said...

I think this is horrific and sad. It is terrible that people think that eating disorders are something to be ashamed of, something that if the person wanted to, they could wake up one morning and be cured. I did not know this girl at all but I hope that she is in a better place, no longer haunted by the evil that takes form of anorexia.