Interview at CarolineLeavittville

Thanks to writer, reviewer, and blogger extraordinaire Caroline Leavitt for posting a thoughtful, thought-provoking interview about Brave Girl Eating on her blog today. I love it when interviewers really get the book--and Caroline did.

She's not that skinny. Is she?

Why you can't tell if someone has anorexia just by looking. Read about it on my new blog, Brave Girl Eating, here at Psychology Today.

Photo © Steve Pope Photography

Looking for young adults with anorexia

Researchers at the University of Chicago, under the direction of Dr. Daniel le Grange (pictured, left), have just won an NIH grant to study family-based treatment (FBT, also known as the Maudsley approach) in young adults. If your family lives in the Chicago area, or within driving distance, you could get free treatment if you qualify for the study. Not to mention the chance to get some of the best treatment for anorexia in the country. It's a win-win!

Here are the study parameters:

This study is a good match for you if you are:
• 18 to 25 years old
• Meet diagnostic criteria for anorexia nervosa
• Are prepared to participate in assessments
• Interested in cost-free psychotherapy treatment with a family member of choice

Treatment involves up to 6 months of free individual and family therapy sessions.

For more information, please contact the Participant Coordinator at 773-834-9120 or visit University of Chicago here.

Book trailer

A very talented student at Newhouse, Shelby Hadden, created this trailer for my forthcoming memoir, BRAVE GIRL EATING: A FAMILY'S STRUGGLE WITH ANOREXIA. Isn't technology great?

Let me know what you think.

Ditching the concept of "refusal"

The editors of the venerable Diagnostic and Statistical Manual of Mental Disorders, otherwise known as DSM, have just released proposed revisions for the fifth edition of the book, due out in 2013. And WOO-HOO! They've taken out the word refusal in their criteria for anorexia nervosa.

That word has always bugged the crap out of me. It embodies everything I've come to dislike and distrust about conventional eating disorders treatment. It assumes that the person with anorexia is making a choice--a conscious choice--to not eat. It reinforces Hilde Bruch's characterization of anorexia and the people who suffer from it and the whole psychodynamic theory of AN--a theory that has absolutely no basis in scientific evidence or fact. A theory that has kept ED treatment in the 18th century, in my opinion, and condemned sufferers to years of ineffective treatment and torment.

So three cheers to the editors. I hope their proposed revisions make the final cut.

Anorexia ≠ autism

Of late, several researchers have been exploring a possible link between anorexia nervosa and autism spectrum disorders. I've never understood why. It seems fairly clear to me that acute anorexia brings with it an altered state of consciousness that has little to do with a person's ordinary state of mind or ability to interact with people. In his seminal study on human starvation, researcher Ancel Keys noted that those in the throes of semi-starvation tend to lose both the interest in social interactions and the ability to pull them off. That certainly echoes my own observations.

Now, thankfully, researchers at King's College in London have come to the same conclusion. The study's authors write, "These findings indicate almost complete normalization of emotion recognition ability in recovered patients, despite the observation of difficulties in both domains in currently ill patients. Findings suggest that similarities between AN and ASD are restricted to the currently ill AN state and such difficulties in AN may be a factor of starvation."

Now, can we move on to more fruitful avenues of research, please? Like developing effective treatments?

A few thoughts on "refusal"

One of my gripes with the current thinking about eating disorders lies in the very definition of anorexia nervosa, as found in DSM-IV, the psychiatric bible:

Refusal to maintain body weight at or above a minimally normal weight for age and height.

It's the word refusal, frankly, that bugs the hell out of me, with its implication of volition. It suggests that people with anorexia nervosa could maintain their body weight, if they really really wanted to, which suggests, in turn, that AN is a disease of choice.

Nothing, in my experience, could be further from the truth.

So I was delighted to read, in the November issue of the International Journal of Eating Disorders, a literature review by Harvard Medical Schools' Dr. Anne Becker recommending that the word be changed in the next edition of the DSM. According to Becker, "The term 'refusal" in AN criterion A is potentially inaccurate, misleading, and pejorative." Woo-hoo! It doesn't get any more straightforward than that.

Becker, et. al., go on to write:

By implying agency and willfulness, the phrasing . . . may promote stigmatization of AN. In particular, the connotation of the word 'refusal' as behavior that is oppositional may perpetuate the notion that a patient is in control of her symptoms. Research has highlighted the stigmatization of AN both by the public, who appear likely to blame the patient for her illness and to believe she could "pull herself together" if she so desired, and by medical professionals.

Thank you, Dr. Becker, for setting the record straight. May the rest of the ED treatment community take your words to heart.

Why we need to change our attitudes

When my older daughter was ill with anorexia, she went through hell. The rest of the family did too--not the same kind of hell, surely, because after all, we could escape it for an hour or two while she could not. My younger daughter marched through hell along with us. She heard and saw anorexia with all its claws and teeth and terror, and like my husband and me, she came to loathe it.

We've talked quite a bit, she and I, in the years since, about eating disorders, about body image and weight. I've tried to model Health at Every Size for both my daughters. And yet my beautiful, lively, talented younger daughter, Lulu, is convinced that she's fat, and is upset about it.

I've tried reasoning with her: You're not fat; you're going through puberty. Your body needs a little extra flesh on it right now. And even if you were fat, so what? Fat is a descriptive word. We all have fat on our bodies.

And so on. I can practically see my words passing through her like ghosts sailing through a solid wall, making no mark and having no effect. Why should they, when we both know just how viciously society punishes those of us whose bodies are not naturally stick-thin. When the rest of the 8th-grade girls have straight hair and long, lean torsos, and my daughter has hair with a lot of wave and a naturally rounder shape.

The experiences of her sister's illness are now four years behind us. I'm glad they're fading for all of us. But I wish some of what we all saw and learned then could help my younger daughter now. I wish she could remember that there are a lot worse things than being round, that conformity comes with a terrible price, that food is nurturing and sustaining rather than the enemy.

She eats the same way she always has; you better believe I'm watching that closely. I worry, with dread in my heart, when what she thinks is going to inspire her to go on a diet for the first time, and whether she, too, will become anorexic. I worry and I watch and I wait. I wait for the day when I can say to her, "You're beautiful just the way you are," and she will believe it.

I hope I live long enough to see that day.

Is anorexia like alcoholism?

The first question people ask after they read our family's story of helping our daughter Kitty recovery from anorexia: Is this like alcoholism, where she'll be dealing with it for the rest of her life?

It's a fair question, given the fact that traditional rates of relapse in anorexia are extraordinarily high--up to 50% of anorexia sufferers relapse within a year of treatment, according to one 2001 study. I know of several girls my daughter's age who are in the midst of relapses right now. My heart goes out to them.

The first few times people asked this question, it made me cry. The thought that my daughter might have to deal with anorexic thoughts, feelings, and behaviors for the rest of her life is awful and scary and beyond demoralizing.

But there's good reason to hope that for girls like Kitty, whose anorexia is treated relatively quickly (within 3 years of onset) and who become fully weight restored (not to 90 percent of their ideal body weight, as many clinicians are willing to settle for, but to 100 or 110 percent), relapse is far less likely. Preliminary studies of long-term outcomes for teens treated with the Maudsley approach, or family-based therapy, are very promising.

So now when people ask the question, I answer this way: We don't know what will happen for Kitty in the future. But we're hopeful that 10 years from now she will look back on anorexia as one of the trials of adolescence, not as a defining moment in her life. She'll remember it (actually I hope she doesn't remember many of the really bad moments) rather than still be experiencing it.

Our job will be to watch and protect her for the rest of her adolescence, especially when she goes to college, which is often a vulnerable time. Which, when you think of it, is what a parent's job is all about, anyway--to protect and take care of a child.