Saturday, October 06, 2007

Saturday morning at NEDA

This morning's program featured two parents and a husband, all of whom had family members who had anorexia, all of whom had the same therapist. I have tremendous respect for all three of these people, who obviously went through tremendous suffering. I'm happy to say that all three of their family members recovered and are now doing well--but only after many years of being ill. One spouse was ill for 10 years; one of the children was sick for 6 or 7 years, and the other for 10 years.

One of the parents made a comment that for me crystallized everything that's wrong with the way eating disorders have been traditionally treated. He said, speaking of his then-11-year-old daughter, "My wife and I quickly had to accept the fact that this thing was bigger than we were, bigger than our family. There was no way we could help her. We had to turn to the professionals."

His child's recovery followed a fairly typical trajectory: years of very slow progress and relapse, until, as he put it, "She *decided to join us in the fight against her illness."

I got tears in my eyes at that moment, tears of rage for the clinicians who disempowered this family and made them believe there was *no way* they could help their daughter, who taught them that their daughter had to "choose" to get well. For all the families who have accepted that over the years, who have sat at dinner tables watching their children starve and felt there was nothing they could do. Who, frankly, wasted years of their own and their child's life in useless and even counterproductive treatment.

I am so grateful for family-based treatment, for having my role as a parent validated and for being able to help my daughter. Another of the parents said, "I wanted to just march in there and get this thing fixed! But we had to embrace the illness and accept that it would be with us for a long, long time."

If only she'd been told about FBT, how might her life and the life of her daughter have been different?

Friday, October 05, 2007

If only they knew . . .

Over the last two days I've collected quite a bit of material from the many residential treatment centers that are exhibiting here at NEDA. I'm going to be writing about a few of them, starting with the brochure from Rogers Memorial Hospital in Oconomowoc.

If only the people who'd put this slick piece of marketing together knew how parents really reacted to it--or should. I already have an opinion about the programs at Rogers, but if I didn't, this would certainly sway me.

For starters, the image on the cover is of a girl. A young woman, really, maybe 14 or 15 years old. She's smiling, she's very pretty--and she's excruciatingly thin. It's hard to tell just how thin because she's wearing a hoodie over a shirt. But she's a lot thinner than I'd want any child of mine to be. Is she supposed to be recovered? In recovery? Newly arrived at Rogers? If this is a picture of the Rogers recovery, I'd run in the opposite direction. Fast.

Then there are the words that go with this image: "At Rogers Memorial, we utilize proven, evidence-based treatment components that give individuals with an eating disorder the best chance at recovery."

So far, so good. But there's more: "Our philosophy encourages self-empowerment, so that the individual's recoveryt is a result of his or her own success."

Uh-oh. If I'm a new parent I might think this sounds good. But everyone else will read this and know what it refers to: the tired, disproven notion that the individual must "choose" recovery.

Next come some quotes, presumably from Rogers patients, though they're not identified. Top of the list: "The treatment and therapies helped me realize it was my choice to get better." I say stop reading right there and throw the darn thing away. But if you insist on continuing, you'll find this one: "The art therapy was extremely helpful and provided another way for me to explore my eating disorder."

Explore your eating disorder? Honey, I don't want you to explore your eating disorder. I want you to RECOVER from it. Big difference. In fact we may be talking an oxymoron here.

Seen enough? No? Then turn the page for more on the Rogers approach: "Our treatment approach encourages self-empowerment. From admission to discharge and aftercare planning, individuals are involved in every step of the treatment process."

As the parent of a child who's recovered from an e.d., I can't think of anything worse than to have my child involved at every step of the way. As those of us who have been through this know, a child is INCAPABLE of "choosing" recovery, and when she's very very ill, such insistence will a) prolong the course of the disease, b) make treatment ineffective, c) exacerbate the child's already sky-high anxiety, and d) make veryone involved feel guilty as hell for not being able to "choose" recovery.

And here's the thing that gets me: This brochure is supposed to be marketing the program, making it sound irresistible to parents.

I'd say the Rogers folks haven't got a clue about what at least some parents want. And judging from this brochure, I'd say my confidence in their ability to help my child recover is pretty minimal.

That's it for tonight. I'll pick apart some more tomorrow.

More from NEDA

One of the heartening things about the conference so far has been that the amount and kind of discussion around family-based (Maudsley) treatment for anorexia and bulimia. There's been a lot! And all of it's been positive, at least that I've heard. In fact I would say that Maudsley has become something of a buzzword. Some of the people using it seem to have only a hazy idea of what it means, but I guess that's part of the process of this kind of social change.

The general session speakers have been a real mixed bag. This morning's speaker spent more time telling anecdotes about her cats, her children, and herself than anything else, and when she did finally get down to brass tacks, she mostly talked about body image. I'm all for discussions of body image, and how to improve it, but what got to me was her automatic assumptions that disturbances of body image = eating disorders. There was a lot of talk about things like guided visualizations, talking "to" problem body parts, and so on, none of which interests me but hey, I can see that it might be of interest to some people.

The thing that got me, though, was when she tried to connect these kinds of problems and solutions to anorexia. I asked her, if body image disturbance causes e.d.s, why don't we have way more prevalence of anorexia and bulimia? She had no answer. Later, someone else suggested to me that while AN and BN are relatively low incidence, there are a lot of eating disorder not specified cases that don't show up in the statistics. Maybe. What bugs me is the thought of people with anorexia and bulimia who are valiantly trying to recover through these kinds of treatment techniques. There is no evidence to suggest that they're effective. Common sense, and having gone through anorexia with my daughter, tells me they can be worse than useless--they can destructive because they take focus off the things that really matter, like refeeding. So I'm not thrilled with what I heard there.

This afternoon's speaker, Michael Strober, did a very good job of discussion some of the neurobiology of comorbidities. He made one interesting point (well, he made more, but this one was of most interest to me): he said that while most depression that you see in patients with anorexia comes as a result of the starvation, and shows up after and as a byproduct of malnutrition, the heightened anxiety you see almost always precedes the dieting and weight loss behaviors. This was certainly the case in our family: my first inkling that anything was wrong with my daughter was her anxiety level skyrocketed, and she'd never been an anxious kid. No one understands the mechanism, but it was a very interesting observation.

That's it for now--gotta go get in the hot tub! (LOL)

More from San Diego later.

San Diego dispatch

Here I am in beautiful San Diego at the NEDA conference. It's my first time at something like this and I'm not sure what to expect. So far . . . well, it's a mixed bag.

Yesterday afternoon I was lucky enough to have lunch on the UC-San Diego campus with Dr. Walter Kaye and his talented team. Their 5-day Intensive family outpatient program for treating anorexia and bulimia sounds fab to me. (Check it out at If the program had been around when my daughter was diagnosed with anorexia, I think we would have been here in a heartbeat. And I think it would have been a life saver. Literally.

Back at NEDA, pretty much the first thing I did was wander the hall of goodies, where the folks who treat e.d.s set up booths and put out their marketing info. It was all very slick and very disheartening. I walked around asking people what their treatment philosophy was. Half of them didn't understand the question. Many reassured me that they had "all kinds of treatments." Horses seemed to figure prominently, at least in the literature, along with "groups getting at the psychosocial dynamics of anorexia" and so on. When I asked what kind of evidence-based treatments they offered, most looked blank. When I asked how or whether they included families in treatment, a few sounded intelligent, but most, once more, looked blank.

Then again, we're dealing with an area where the American Psychological Association itself still lists
"dysfunctional families or relationships" as one cause of anorexia, and describes the anorexics as "refusing to eat." Tsk tsk, APA; you're sadly out of date. If you knew one thing about anorexia you would know that it's not a refusal to eat; it's an inability to. And you'd also know that PARENTS DO NOT CAUSE EATING DISORDERS. (Read the APA's ill-informed e.d. page at

The worst of the hall were the booths sponsoed by the big guns in e.d. treatment: Renfrew, Rader, Remuda. There were lots of slick little products to take home, ranging from staplers to, I kid you not, Zen sand gardens. What does all this have to do with treatment? You have to be cynical here and remember that there's very big money attached to the treatment of e.d.s. I would have far preferred an outcome study for parents to take away over a cutesy little mirror with an affirmation on the back. Please.

The keynote speech last night started out well, with a report from Lynn Grefe, the president of NEDA. Next up was a young editor from CosmoGirl whose main purpose seemed to be to convince us of how well-meaning that magazine is about presenting positive body images to young women. It sounded like one big advertisement for CosmoGirl. Somewhere in there she referred earnestly to an article they'd run called "Fat and Thin," and flashed a visual from the magazine on the screen. There it was: a headless fattie, next to a headless waif, followed by more earnest talk about how obesity is an eating disorder, too.

I wanted to stand up and say, "That's like saying thinness is an eating disorder, honey. It's not how much you weigh; it's your relationship with food and eating." But it is, after all, my first NEDA conference, and I was feeling a little shy.

Next time.

More from NEDA later today.

Monday, October 01, 2007

Are you going to NEDA?

To the annual National Eating Disorders Association conference in San Diego, that is. If so, please look me up and say hello. I'll be presenting on Friday afternoon, along with Dr. Walter Kaye and Laura Collins, author of Eating With Your Anorexic. Stellar company and what promises to be a much-needed panel discussion on families and eating disorders treatment.