February 29, 2012

Eating Disorders Awareness week contrarians

Lots of good commentary out there during Eating Disorders Awareness Weeks** and for the first time I'm seeing a lot of feisty attitude: it's not all butterflies and unicorns this year!

From Catherine of Siena:
"BE AWARE that just because you’ve got issues with your hips does not mean you understand eating disorders, and that telling someone with an ED that you “get it” because you once juice-fasted is going to come across about as sensitively as telling an alcoholic you “get it” because you have a glass of wine with your dinner."

From A Life Recovered:
Everyone thinks they know all about eating disorders. The problem, of course, is that they don’t actually know anything at all and it seems to me that EDAW is, if anything, making it worse. All the “love your body events” (both EDAW events here in Seattle are body image focused, Renfrew’s Barefaced and Beautiful campaign) will only surve to further confuse people while simultaneously trivializing a deadly illness. Even the backlash against the  love your body focus gets it wrong.

From So it Goes:
More importantly, I think it’s important to STOP SPREADING MYTHS. Sometimes, in raising awareness, we focus on the wrong things. For instance: models, media, parents, and “control issues” do not cause eating disorders. They may play a role in sustaining them, but by focusing on these issues, we perpetuate commonly misheld belief. Furthermore, these beliefs are already held by society — in fact, they kind of cause the stereotypes surrounding eating disorders.

From ED Bites:
I know that body image obsessions are common in EDs, and I know that makeup can be part of that. But I almost never wear makeup, and I still got an eating disorder. So I'm just wondering how going without makeup is related to Eating Disorders Awareness Week. It's kinda maybe tangentially related, maybe, if you lump body image distress in with eating disorders. But really? Makeup doesn't cause eating disorders.

For EDA week 2012, beat have focussed on breaking the silence, saying their research suggests over half of their eating disordered respondents didn’t tell anyone about the problem they suspected because they were scared, or didn’t know what to say. But every day I hear stories of people who have taken that first terrifying step, and have had their hopes dashed by finding themselves on the receiving end of an equally stony silence from healthcare providers. They weigh too much, they are non-compliant, they are chronic, they need to want it, they are complicated, they are atypical, they are hopeless. How many out there are suffering alone – not in that first silence but in something far worse? Worse, because at least before you speak you can hope that speaking will make a difference.

From: Mumbles, Murmurs and Mutterings:
YES - it is brilliant that people are becoming more "aware" of eating disorders and more people are seeking help - but if the information out there is actually WRONG, unhelpful and triggering, what part of the awareness is actually beneficial? This horrendous article was published last week in Eating Disorders Awareness Week.

And you'll note, the attitude isn't just coming from troublesome, dyspeptic parents; all of the above are eating disorder patient bloggers. 

** not all countries have the same EDAWs, so it's more of a season than a week!

February 26, 2012

What would I do if I was misquoted?

If I was misquoted saying this in a newspaper:

“If there is a supportive home environment, the evidence is that eating disorders will not follow. Eating disorders, like anorexia, largely develop in the homes of white middle-class girls with controlling mothers, and the child reclaims control with how she eats. That shouldn’t happen if a child feels cared for and is taught to take ownership of their diet.”

I would make it my urgent mission to have it removed, demand the paper publish my disgusted and horrified rebuttal, and - because I would now be forever associated with that reprehensible paragraph - join the efforts of those fighting that kind of thinking.

I'm not exaggerating when I say that a paragraph like that in a newspaper, no matter how innocently or ignorantly published, could help kill a patient. The parent who reads that paragraph will assume it is true and it will feed every fear they already have. They may delay seeking care, thinking the problem lies within and is unfixable, worsening the prognosis. They may accept care that marginalizes them and blames them - which is abundant. They may back off in supporting their loved one in fear that their influence will only harm. They may reject the clinicians who don't blame them - and waste time during treatment wallowing in guilt.

This isn't benign. It is a pernicious and dangerous line of thinking that so many people have worked so hard to fight.

If you are quoted as saying it, even if you didn't, you own it. I know what I'd do. How about you?

Disney pulls down damaging "attraction"

The "Habit Heroes" exhibit at Disney's Epcot has been "temporarily" shut down.

Congratulations and profound gratitude is owed all the organizations and individuals who contacted Disney and Blue Cross Blue Shield, and to Disney for hearing them.

I wish it didn't have to be the eating disorders community to do this. Why does it take knowledge of life-threatening psychiatric illness to have a clue about weight shaming? Everyone should know this intuitively, and it has nothing to do with eating disorders. And yet the ones to put up alarms and speak out (and face horrifyingly ignorant and sickening backlash) are those in the eating disorder world? Thank you to the Binge Eating Disorder Association (BEDA), the National Eating Disorders Association (NEDA), ANAD, and all others who spoke up quickly and assertively.

Disney's Anti-Obesity 'Habit Heroes' Exhibit At Epcot Causes Controversy 

Now, Disney, time to make that "temporary" to a permanent status, tear it down, and get back to entertaining people.

Here's a blogger who says it well:

"Personal appearance has long been the most common reason for people to bully others, but we’ve succeeded in establishing a consensus that it’s not okay to make fun of people for having spots, or red hair, or for being short, etc. But apparently it’s still okay to make fun of people for being overweight. Because, you know, it’s their own fault. If Fatty over there would only lose some weight, they wouldn’t get picked on. We tell bullying victims how “it’s the bully’s fault, not yours. You’re not to blame.” And then we go and make an exception for fat people"

February 25, 2012

Contribute to an upcoming book!

June Alexander, the wonderful author of My Kid Is Back and A Girl Named Tim, is working on a new collaboration and she's hoping you'll help:

Untwisting Eating Disorders

Check it out and get involved!

if parents are empowered and included, rather than excluded

Some voices matter more than others, so when Thomas Insel - head of the National Institute of Mental Health - talks about eating disorders it gets heard:

"Traditionally, anorexia in adolescents has been viewed as a “family systems” problem requiring a “parentectomy” — exclusion of the parents or caregivers from the teen’s treatment plan. But research at the Maudsley Hospital in London, which was replicated in the United States by Le Grange and Lock, has shown that outcomes appear much better if parents are empowered and included, rather than excluded, from the treatment.iv In fact, a carefully controlled trial evaluating the effectiveness of a family-based treatment approach found 50 percent of participants continued to experience full remission one year after the end of therapy.v Whether this same approach will work for older patients is not clear, but research is currently underway that incorporates families in the treatment of adults with anorexia. The proof of principle is important: family involvement can be critical for recovery."

Dr. Insel, who was Keynote speaker at F.E.A.S.T.'s symposium in November, offers us so much hope!

February 24, 2012

Awareness of eating disorders awareness

Yes, "awareness" is good. The public really knows little about eating disorders and it is not until we are hit with it in our own families do we discover how difficult the illness is and how absurdly difficult it is to get proper treatment.

But not ALL awareness is good. Awareness that distracts from the important stuff can be WORSE than ignorance.

Most awareness campaigns around eating disorders are based on the same mistaken ideas of the problem that the public already holds: poor body image, size zero models, pressure to be thin, appearance over achievement, and "an issue of control." Trashing our scales, mocking Barbie, taking off our makeup, and scolding mom are easy but cheap and suspiciously easy: we really don't need any more awareness around those ideas. We need to DISPEL those.

Here's what the public needs awareness about:
  • Dieting and over-exercise are toxic for the developing brain, and can be a sign of deadly mental illness.
  • Children and adolescents shouldn't be losing weight, skipping meals, or using exercise to change their body size.
  • Eating disorders, while very serious psychiatric conditions, are treatable.
  • Get your loved one into treatment. Not ANY treatment: treatment based on good science.
P.S. Most treatment available is not based on good science.

February 19, 2012

Eating disorders are learned from parents

Why do people assume parents on diets and self-conscious about weight give their kids eating disorders?

Mostly, it seems to be a very unsophisticated view of mental illness. People confuse disordered eating (a behavior, and all too common), with an eating disorder (the very-poorly conceived name for a brain disorder with symptoms and perpetuating factors around eating). This is similar to believing eating a lot of sugar leads to Type I Diabetes. Or eating eggs will make you fertile.

Reframe: the symptoms of self-consciousness, body image distress, drive to avoid food can all happen without outside influences at all. The brain can be wired that way, or wired to think that way when precipitated by energy imbalance. Often, the environment DOES send all these messages, and even in healthy people they have an effect, but not to the hallucinatory and rigid way seen with eating disorders.

WIthout the genetics and predisposition our kids could, as many do, try on all sorts of disordered behaviors but they won't be able to sustain them. They may believe all sorts of wacky ideas about food and weight but logic and persuasion still work for them. In other words, we're talking about a genuine mind-altering brain disorder and not a set of bad choices.

So it can be true that a mother was on a diet and the daughter developed an eating disorder, of course. It did in our family: I'd been fighting the spread of middle age just as my doctor and media and friends told me I should: eating less, eating different things, choosing different activities. When my daughter developed extreme versions of those same thoughts and behaviors it seemed obvious where they came from. I wasted precious time backpedalling and trying to get her to be only as disordered as me, which at the time I referred to as "balanced." Now I realize my dieting was stupid and unhealthy but I also know it no more made my daughter mentally ill than it made me fit into my high school jeans. (a cheap knock off of the designer jeans I really wanted my mom to buy)

I did disordered eating, but I didn't have an eating disorder. I was just a fool. My daughter was not.

I now know that it is more like Obsessive Compulsive Disorder. You can't catch it or be pushed into it. A mother who keeps a clean house doesn't push her children to develop compulsive hand washing. Can you imagine demonizing that mother as "setting unrealistic standards of cleanliness?"

February 18, 2012

Eating disorder as a "sin"

A parent recently contacted me to express her distress at a radio show she heard on the topic of eating disorders. I have listened to some of the tapes and I do feel very concerned for parents who might hear the show and develop inaccurate ideas about the nature of eating disorders and faith.

The idea that an eating disorder is a "besetting sin," one that mothers push their daughters into, is deeply concerning to me.

I wrote to the radio interviewer (whose daughter has bulimia) and the author who is being interviewed  to share my concern. I am positive that they are both well-meaning people who are simply not aware that an eating disorder is a treatable psychiatric disorder and not a reflection of the morality or true nature of that person. Neither have responded.

I am sure that parents will have thoughts on this and may want to reach out to these mothers. I ask, as always, that it be done with respect and calm. This is also not a matter of religion or criticism of religion. I believe it is always best to assume that other people do not wish to cause harm and do not mean to - they lack information and should welcome it. 

February 17, 2012

The big picture

I've been in an interesting state lately: fighting the tide of tasks that must be done while surfing my developing insights about The Big Picture.

None of the little stuff matters unless it informs and builds toward larger aims. Each email, each tussle, every phone call plays a role in policy and persuasion and networking toward better diagnosis, treatment, and RECOVERY for real people - many who are not yet ill.

At the same time I am more and more heartbroken at the little things - petty, prideful, pyrrhic, and myopic things - that keep progress and real change from happening. I see SO MUCH opportunity and goodwill and progress being squandered.

thank you, Katie, for this wonderful, perfect quote:

“While wandering a deserted beach at dawn, stagnant in my work, I saw a man in the distance bending and throwing as he walked the endless stretch toward me. As he came near, I could see that he was throwing starfish, abandoned on the sand by the tide, back into the sea. When he was close enough I asked him why he was working so hard at this strange task. He said that the sun would dry the starfish and they would die. I said to him that I thought he was foolish. there were thousands of starfish on miles and miles of beach. One man alone could never make a difference. He smiled as he picked up the next starfish. Hurling it far into the sea he said, "It makes a difference for this one." I abandoned my writing and spent the morning throwing starfish.” 
 Loren Eiseley

February 12, 2012

Symposium videos online!

OK, so it took a while - don't ask! - but we're there: over seven hours of presentations at the F.E.A.S.T. symposium are now available online - members only - and I'm so grateful and happy.

Thank you to our speakers, our audience, our volunteers, the American University students who filmed and produced the videos - to everyone who has supported F.E.A.S.T. so far...

And to my beautiful family - none of this gets done without a cast of many and for me the cast of supporters starts with my husband and kids and parents.

Those videos will now offer a degree of science, thoughtfulness, hope, and solidarity that I don't believe has EVER existed in this field. I believe we made history in November and by making the presentations widely available is so very F.E.A.S.T.

Those videos are our gift to families everywhere: ENJOY!

(you do have to become a F.E.A.S.T. member, though, which is easy and welcomed)

 A taste:

February 3, 2012

London eating disorder conference welcomes parents

The last time I was in London (okay, it was my first time, too - except for plane changes), I was there to share an EDIC podium with my friend Fiona. Well, this time she'll be there but I won't. Chunter, grumble, grr.

I am very envious of my F.E.A.S.T. friends who will be there when I cannot, but encourage all families to check out the Eating Disorders International Conference to be held in London March 15-17.

EDIC 2012 LONDONI am very envious of my F.E.A.S.T. friends who will be there when I cannot, but encourage all families to check out the Eating Disorders International Conference to be held in London March 15-17.

If you can attend, meet up with other parents from F.E.A.S.T. and take pictures and send tweets, pictures, notes - because the chap over there on the left doesn't look very forthcoming.