November 25, 2012

Eating disorder clinic in Washington DC has a best friend on the staff

I know this clinic, and this doctor, but I've never met the dog!

I'd love to see a RCT on this. Just joking. Like other inherently nice things (art, music, the outdoors, yoga, flowers) having a friendly dog in the office would be nice. Not everything that professionals offer has to be studied nor can everything be quantified. I'm pretty sure our family would have been disarmed and calmed by a dog like this. Or a cat. A dolphin?

In any case, nice to see an article on a hospital program I know and respect. Dr. Silber, also in that program, will speak at our conference next week!


The Worst Baby Advice Ever



A reminder that parenting advice, no matter how earnest or shrill, often seems really silly later.

November 24, 2012

Adversity2Advocacy


I have two goals with my advocacy work: one is to bring about improvements in the treatment of patients, the other is to gather other parents to do the same. I really feel the current state of treatment that most families meet is unacceptably poor and that the best hope to improve that is us, parents, allying together to encourage, support, and sometimes DEMAND improvements.

My inspiration for this does not come solely from my own experience and is not limited to eating disorders: this has been the story for countless social and medical movements. Autism and childhood cancer come to mind first but there are so many I really have to think a minute to think of one that truly was not. 

So, it is a special honor to be recognized by the A2A Alliance. I'm psyched to be part of the network and to support and join with other activists. I think eating disorder advocacy needs desperately to join with others - we're in a cup-de-sac of our own insularity. It isn't just that ED advocates don't feel comfortable allying with other serious mental illness advocates or other health and social causes: the antipathy is mutual. I've been astounded to be rebuffed by parent groups and other advocacy groups who held just as prejudiced and antiquated views of eating disorders as the general public but, I would argue, with much less excuse.

My work is meaningless without others. Everything I do has to be done on behalf of and in concert with others. So, friends, help me expand the reach of my advocacy by reading my new profile on A2A and then "liking" A3A's Facebook page. Doing so means showing a lot of people that there are eating disorder advocates and we want to step up and want to have a voice. It only takes a moment. While you're in the mood to support advocacy, subscribe to the A2A Twitter feed, too.

November 23, 2012

They're on in Nottingham!

What am I doing today? I'm watching the lifestream feed from the conference in Nottingham, UK. I'm so thrilled that F.E.A.S.T. is involved and so looking forward to watching today and tomorrow!

http://www.ustream.tv/channel/feast2012-nottingham

Program here: http://www.feast-ed.org/Conferences/Nottingham2012.aspx

And tweets from: @mirandasmurmurs using hashtag:  



Live Video streaming by Ustream

November 15, 2012

Free Q&A on Family-Based Treatment

Joy Jacobs, one of F.E.A.S.T.'s advisors, is offering free FBT question/answer sessions on Monday to interested families. Read her blog for details:

http://www.eatingdisordersblogs.com/one_more_bite/2012/11/giving-thanks-and-relief.html

 

making a success of Maudsley


I'm asked with some regularity by therapists for ideas or advice on cases where parents struggle to succeed in Family-Based Maudsley Treatment. They describe trying their hardest to empower parents who don't get it, relieve the guilt of parents who won't let it go, giving parents information they won't use. I can't imagine how difficult that must be on a clinician. 

Here was one of my recent answers, slightly edited:

What you describe is not uncommon. I've watched so many families start and stop and falter. I've heard from many clinicians with similar struggles. 

It could be that the families you speak of truly are not going to be successful. FBT has great rates of success but still only 80%, right? But we have to always consider that there isn't a good second option so giving up on FBT isn't usually turning to something better. If they don't make a success at FBT what's the alternative? Has every avenue of supporting FBT been tried? Quitting job, bringing in more adults, a leave from school, partial hospitalization, a family training week, anti-anxiety meds: there are usually options that haven't been tried.

Context matters, too. If a family has 50 minutes with you a week and the rest of their life is surrounded by people and influences that counteract what YOU are saying to them it's like being told to take deep yoga breaths in a smoke-filled room: right advice, wrong life to do it. And to absolutely TORTURE my analogy here, living with an anxious possibly fatally ill young person is more like trying to breathe in a burning house. You don't have control over all that. No matter how good YOU are, the family may not have the environment it needs to help them hear you.

We are a society that believes deeply in personal agency, in parents as friends, in food and the body as metaphors, and in the urgency of individuation. You can't erase that in a therapeutic method. Parenting style doesn't change overnight or through a simple intellectual discussion. Some families start out closer to the ideal FBT stance, others tragically distant.

What written and video materials are you giving them? That can really matter in giving context to what you are telling them. 

How firm are you in the dangers, the necessary commitment, and the difficulty?

You won't like this one… There are specific clinical skills to  empowering parents in this way. It really pulls against the usual clinical stance. Not all clinicians have drunk the Kool-Aid of complete confidence in parental ability, and not all clinicians are equally good at conveying both the confidence in the family AND the confidence in their OWN ability to guide them through it. People get down on FBT for being too out of the book but I really think this approach requires some of the best clinical connection and ability – but for the parents and not the patient, which is what everyone is trained in. I'm just throwing that out there, because the approach has to be a good match with the clinician, not just the family. That said, anyone treating child and adolescent Eds needs to get good at FBT in their toolbox, I believe. Have you had the train2treat4ed  training and are you in close touch with others who are working through this change in practice? 

Marital splitting is the single most undermining factor in FBT, from what I observe. The natural differences between men and women, the personal intimate history between a couple, the legacy of coping in crisis… it's rife with hazards. Many couples depend on that interplay to maintain their connection, even, or grudges nursed for years become icebergs of danger to the process of that "same page, same line, same letter." Ugh, the stories I hear. I get very frustrated with people.

I also see a lot of families who struggle intellectually with the concepts here. They grasp only one issue at a time and when relieved of that worry forget there are other layers. For example, "may die" becomes the only consideration and once the patient is, as you mention, a little better appearing the alarms are off and instead of tackling the next phase they go off to their regularly scheduled life. As tedious as it is, the world has to keep reminding the family that an eating disorder is not just a risk of death  now – it's a complex and chronic predisposition.

Each family has its own learning style. Some respond to authoritative words by the therapist, others like to be entrusted to read very scientific info, others feel condescended to with too much jargon, still others need to talk to others in their situation and some just distrust clinicians. Honestly, I wonder how I might have responded to FBT had it been offered to me instead of me seeking it out!

That said, I have seen ALL KINDS of families end up successful at this. Angry, meek, stupid, mentally ill, unpleasant, manipulative, anxious, self-involved, and even deeply disordered. I'm sure there are more suited and less but I've been amazed at the variety of ways it works out. So hard to know what the family CAN be if given a chance, good care, and time.

Last, I want to say how much I admire clinicians who do this work, like you. It's really hard. I know a lot of you and have seen the struggles and the flak you get from colleagues. I also know that it is harder in many ways than traditional therapy. But I do also see more and more clinicians who find their way and feel a great deal more effective and satisfied in their work when they are fluent and experienced in it, adding it to all the other qualities and therapeutic techniques that make a psychotherapist good at what they do. The fact is, you're asking parents to do very difficult stuff and even when you are right they are not always going to see that. Parents can be "a stiff-necked people."

November 14, 2012

NEDA survey, reconsidered

Well, I'm still untangling this, but a blog post by Kantor and Kantor and growing concern by people in the ED world points to a survey promoted by NEDA (National Eating Disorders Association) as possibly not what it appeared.

If anyone has information to share on this, please email or comment?

Here's my ruby slippers... where are yours?

We named the dinner for the Alexandria conference a "Ruby Slipper Party" because the theme of the conference is "There's No Place Like Home."

Really, if you know me you have correctly guessed it is just an excuse for me to buy some fabulous shoes.

Here's mine, don't forget to pack yours.





Here's Erica's - feel free to email me yours and I'll add! Erica, these are smashing!!

November 13, 2012

meal replacement weight loss program for children as fundraiser

I was recently approached by someone who was exploring a high school music fund-raising program. The students were to solicit donations that would go to a company called Visalus that would then donate weight loss food replacements to poor children and part of the donation would go back to the school. I've since discovered that this is a widespread program, called "Feed the Children."

This, naturally, stood my hair on end.

I promised to run this idea past experts, and I've reached out to a number of them. But I thought I'd also let you all "weigh" in and will share your comments with the parent committee. For some reason, they don't find my frothing at the mouth entirely convincing.

I'm also aware that this blog post will then come up when any parent googles this program and Visalus, and I'd like to offer a discussion here on the question of diets for kids, meal replacements instead of food and kids promoting dieting for poor kids.

video platformvideo managementvideo solutionsvideo player

November 12, 2012

I'm tired of poetry, metaphor, and unicorns

Writers do well not to discourage reading. Writers must be and must have readers. But the literature of eating disorders too often drains my will to read. The reflexive polemics and inaccessible jargon and grinding a point to death: or maybe I'm just tired.

Tired of good ideas inadequately expressed, or expressed along with terribly bad ideas. Good information delivered so breathlessly as to discredit itself or have to live the adjective half-life of "controversial." Tired of good writing devoted to poor insights. The last stings most.

We have no way of stopping such tripe as The Anorexic Statement, a poetic flight into the writer's own health and the people she uses as psychoanalytic objects of her despair. Even the rebuttal, brave and thoughtful, can further fail the topic: from Freud to Bruch is not the distance needed.

A lovely antidote, however, appears today, and may there be more:

It's arrogant to say anorexia is a personal choice rather than a mental illness 

Good writing about eating disorders does exist. Harriet Brown and Carrie Arnold come to mind. I plod away doing my best as well, and confess that I take criticism of my book's view of EDs quite happily but suffer most if called out as a bad writer than any other comment. Yet these narratives do not clear the way for even better: monthly a new book comes out with the same tired narratives, same poetic misunderstandings -- and they sell. They sell well because they don't have to adhere to truth or beauty. In fact, it seems we really cannot 'handle' the truth and prefer beauty even if conceived of poison and ground glass.

We need a "Wasted" for 2013 -- that would not only be true but would capture the popular imagination.  A "Best Little Girl in the World" with the same heroine but a very different treatment team. We need to replace "Thin" on movie lists, and retire the unicorns. We need A Beautiful Mind for EDs, and Lorenzo's Oil for the parents. We need art and poetry to reflect the real story: that patients of EDs suffer deeply but also recover heroically from an illness, not from the social ill of the week. We need the story told of families as supporting cast not villains. We need an eating disorder therapist that Harrison Ford or Sally Field can play in the movie version. We need a best-selling song about courageous eating, friends rallying behind an ill patient, grandmothers making casseroles -- and a Rockwell painting of a family leaving a clinic together for the last time, smiling.

We need documentaries that reveal the true misery of families, expose the snake oil purveyors, and leave out the visual cliches of mirrors and slow-motion headless binging.

There are villains: but they are as likely to be insurance adjustors and jaded clinic directors and well-meaning track coaches as anyone.

The real stories of eating disorders are dramatic and complex and poetic as the exhausted storyline the public knows. I think they're ready. I sure am.

November 9, 2012

Love your body joins "don't worry be happy" as treatment for serious mental illness

I get it. I know why the public thinks being unhappy with one's body leads to eating disorders and eating disorders are a sign of not sufficiently loving one's body. As silly ideas go, this one is plausible. It SEEMS obvious that if we could just get young people to love and appreciate their unique and diverse bodies they would be less unhappy with their appearance and less likely to become obsessed with the issue and start eating in a disordered way. It's logical.

It is also wrong.

Let's try on a few analogies "for size."

Do we increase happy content in movies and TV to stop depression?

Ban conspiracy movies to prevent schizophrenia?

Do we set the pictures a bit off kilter on TV, mess up people's rooms, and show people being unhygienic to reduce obsessive compulsive disorders?

Why, then, do we continue to see eating disorders in this way?

Why is so much of the research and media about eating disorders following this childish logic?

Dear public: Eating disorders are tremendously serious mental illnesses whose symptoms of body image distress and dysmorphia and disordered eating bear little resemblance and scarcely correspond to environmental pressures about appearance. Most young kids and those not brought up with these values who get eating disorders don't even HAVE those symptoms but they still get the disorder.

We can't continue to address eating disorders with messages about loving our body and unicorns and butterflies about self-acceptance. Those messages, while important and helpful for the general public, are actually harming eating disorder patients by sending the message "if we could only convince these poor overwhelmed kids how beautiful they are they will be okay," which has a corollary: "You can't swallow toothpaste residue for terror of calories because you've taken the message of thinness too far." We're blaming mentally ill people (children, most of them) for giving themselves fears and obsessions and compulsions out of vanity gone amuck.

We wouldn't do this with bipolar or schizophrenia or autism because we GET IT that these are not conscious decisions or influences. When we wake up as a society and GET THIS about eating disorders we will, rightly, be ashamed.

November 8, 2012

did you hear?

If you are a member of F.E.A.S.T. then you learned through the newsletter this week who will be taking over as Executive Director when I step down December 31. If you are not, then you probably should be. It's free, and you'll need to be a member to get access to the lifestream of the Alexandria conference this month...

November 3, 2012

"A lover of truth"

I recently had a pretty typical exchange on a forum with people who actually treat real families that should chill the blood of those who understand the peril for the patients facing these attitudes and - therefore - denied appropriate care. I won't share the people involved for a number of reasons but mostly because this is not unusual. I feel parents really need to know and talk about the fact that this kind of discussion between clinicians is going on - in offices, at conferences, in trainings - without objection. These are real attitudes and I believe they are causing genuine harm. When these conversations go on among professionals there is a strong ethic of "everybody's right except the one criticizing." Objections are called "black and white" and the refuge of "everyone's different" is standard.

Without question, "brainspotting" and toxic families and dream analysis appall those who run evidence-based clinics but I see no movement in the professional field to call out or stand against such practices. But what about these patients? Who is protecting them? How are their parents to know how baseless and harmful this is before it is too late?

This conversation, like so many of the same, starts with some baseless assertion and a trail of false ideas. When objected to, the responses reveal other concerning misconceptions. In the end, nothing changes and no one is accountable.