February 27, 2014

Love your body: is this an eating disorder issue?

Is it cynical to think that "loving" our bodies is just an easier sell than what we might REALLY need to talk about for eating disorder "awareness?"

Is "love your bacteria" or "love asymmetry" a reasonable campaign for OCD?

Or "love reality" for those suffering from psychosis?

How about "don't worry, be happy" for major depression?

Not only is "love your body" something that society doesn't expect from itself, but it seems particularly unfeeling to associate with a mental illness that makes living in one's skin so terribly difficult. It's insulting, really, and trivializing to extreme distress.

I get it, I really do -- as a feminist and a parent and a person -- that positive messages are, well, positive. But since people with eating disorders, a mental illness, did not choose to feel unwell in their bodies is it fair to set that as a standard?

Does "loving" our bodies help prevent, treat, or comfort those with eating disorders?

The evidence for prevention is not there. Ditto for treatment.

I'll tell you where it does seem to be positive, however. As a parent caregiver I do want the environment around patients to be nonjudgmental of appearance and neutral about weight. I do find it horrifying to see families and patients surrounded by a toxically body-shaming culture when they are coping with recovery. Relapse prevention is hampered by mixed messages as well.

But I don't think this is limited to families facing eating disorders. I want that for ALL children, from and for ALL of us. Making this issue about eating disorders not only confuses people about the disorders but it makes ED patients seem "oversensitive" and as if they need a bubble of artificial protection. ED is a mental illness. We don't ban cleanser commercials for fear of "triggering" those with OCDs because there is nothing wrong with cleansers. There IS something wrong with diet marketing. There IS something wrong with fat-shaming (Biggest Loser, anyone?). There is NOTHING good about surrounding children with fat jokes, teasing, objectification of women's bodies, bullying of boys over their physique, rating people's attractiveness, or spending more than a sliver of our day caring about appearance of any kind.


February 26, 2014

#EDAfail and playing the dozens

This reference will age me, but "playing the dozens" used to be "a thing." It involved escalating, and preferably amusing, insults about someone's mom: "Your mother is so..." Until one person either laughs or throws a punch.

The dozens is all the rage right now as Eating Disorder Awareness season seems to be a free for all on moms.

Parents lead by example, and Dr. Drew's daughter blames mom are only two glaring examples.

But this dozens game has a twist: the insults are coming from and not being protested IN the family.

It isn't that advocates are insulting one another, they're out there doing advocacy that undermines one another. But there is a rule, too, not to question other advocates. So where does that leave us?

Eating Disorder Awareness week is a welcome opportunity to get our messages out. But some of those messages are really arguable. They reveal fissures and all out chasms between us all. We need to deal with this. We need to be less afraid of conflict "in the family" than the loss of power we could have if we were working together.

Problems:

  • Most "awareness" messages are about how serious eating disorders are. All good. But this is followed all too often with messages about trivial or even unsupported aspects of eating causation or treatment. (i.e. "body image" and "parents lead by example") which actually make eating disorders look unserious.
  • Most "awareness" messages involve scary medical symptoms when it is the psychiatric symptoms that are central to eating disorder anguish, disability, challenges to treatment, and maintenance.
  • Most "awareness" messages replace one myth with another. It's not unicorns, it's fairies! It's not about vanity, it's a need to control!
  • Most "awareness" messages conflate symptoms with causes. Perfectionism, "drive for thinness," bizarre eating behaviors are symptoms. 
  • Most "awareness" messages offer simple prevention strategies with zero, ZERO evidence to support them. LOOK IT UP.
  • Most "awareness" messages are easy sells: good parenting, positive affirmations, "hope," and self-care. The reality isn't as ribbon-friendly: difficult treatment, full-time caregiving, financial stress, and lack of research dollars. Cancer isn't fun either, but nobody thinks all those pink ribbons are enough.

Yet the tragic, the weep-inducing waste is that this week COULD be an opportunity to spotlight the very information about eating disorders that could save lives and families:

  • Tell folks eating disorders involve problems with the brain. Eureka!
  • Tell the world that there are effective treatments.
  • Expose the fact that most treatment offered in the community is entirely without basis.
  • Make sure people know things have changed in the past 10 years, in a good way.
  • Inform parents that their role is not shame, it's INFORMATION & ACTION.
  • Awareness that most of the information out there about EDs is sincere but uninformed and out of date
I'm joining the growing EDA Curmudgeon club, including the awesome comments:

And make sure to check out the #EDAfail community on F.E.A.S.T.'s Facebook page and on Twitter. If stuff pisses you off, you're not alone. And you are needed.

UPDATED: There is now a #EDAfail and #EDAstar page to help. Please tweet!

February 24, 2014

More information, less empty "awareness"

I've been shocked, I've been grumpy, and I've been silly about Eating Disorder Awareness Weeks in the past, but this one is starting worse than ever:

Different advocacy groups have different weeks as their turf in their country so not all "awareness" weeks are the same. Which is a good role-play of the lack of consensus between groups on what eating disorders are, how they're treated, and what recovery means...

The media coverage, which is the holy grail of awareness weeks, is bad.

  • breathless repetitions of the SHOCK that EDs are not about thin white rich girls. Um. They never were and when we repeat it we just refresh the myth.
  • by not making sense: mixing up body image with dysmorphia, eating disorders with wanting to be thin

  • OH THE VISUALS. The distorted mirror shot, the before/after, the measuring tape, the scales, the headless freak show, and the empty plates. Sigh. Try this: emergency rooms, crossed out social calendars, drained bank accounts, funeral programs, cancelled graduations, the forwarded emails about upcoming Dr. Phil shows.
  • Quotes that contradict other quotes in the same piece.
  • Quotes by people who know little about the current thinking in the field
  • Myth busting that knocks one down by citing another
The advocacy and treatment worlds need to get on the same page. This will help with the media coverage, since we are the ones begging news outlets to accept that THIS is the week, yes, THIS one, to pay attention to this issue. This conversation means some uncomfortable moments, because no one wants to have their motives questioned. 

I'm not questioning anyone's motives. But not all "awareness" is equal, or helpful. Some is actively harmful and pulls away from the hard work that people I respect are doing. 

PS Thank you to Carrie Arnold for asking who ED awareness weeks are for, anyway.

February 23, 2014

Parents lead by example: simple tips for parents to prevent and stop an eating disorder. Or, maybe not.

I was disturbed today to read in Forbes about the role parents play in causing and potentially preventing eating disorders.

In fact, parents do not cause nor is there evidence we can prevent eating disorders. While the vapid bullet points about what parents should do are all quite true, they are true just because they are good parenting, not because they have anything to do with eating disorders.

An eating disorder diagnosis tells us nothing about how the patient was raised. Period.

The phrase "Parents lead by example" should never, ever, ever be used or implied when talking about eating disorders. This has to stop.

Imagine if you will that an article about cancer awareness gave a list of basic hygiene tips for parents, implying that cancer was a sign of lax hand washing. *head desk*

Eating disorders are not a problem with "body image." They are not treated, or prevented, with normal parenting. If you suspect an eating disorder ACT NOW. Your child may have a serious but treatable brain disorder. Seek evidence-based treatment and make sure to read widely on the recent science and practice on eating disorders.

I so wish the writer of that piece had. What a tragic waste of "awareness" when it falls onto ideas that are decades stale and actively harmful.

February 21, 2014

Lesson plan fail: Discovery Education teaching wrong messages about eating disorders

Discovery Education's module on "Overcoming Eating Disorders."

I almost don't know where to start. After a lot of sighing, I'll give it a shot.

On the facts:

  • Obesity is not an eating disorder. (Weight status is not a mental illness.)
  • Anorexia is an eating disorder but it is the least common and no more dangerous than the others, which are simply absent here.
  • Neither obesity nor anorexia are caused by poor body image, whatever that means, or treated by better body image.
  • Body dysmorphia, a psychiatric symptom, is not a failure to appreciate one's body
  • "Obesity" is not a failure to see how large you are
  • "Overcoming" an eating disorder, if present, is not achieved in this exercise. Actual treatment is something for families and professionals to address
  • Oh, dear, there are so many errors here I could go on all day
  • I shudder to consider what must be on the video

But let's get back to the tragic context here: TEACHERS giving inaccurate information to children. Adults leading children in exercises not only of inappropriate private issues but with grossly inaccurate information.

My heart weeps at the thought of children in a classroom looking at one another's bodies under the probing of a trusted teacher and inviting others to look at theirs, if they are "comfortable."

I am enraged at the idea of children "critiquing" each other's self-images.

And then GRADING them on the experience.

This isn't teaching. This isn't responsible. This isn't even in the range of appropriate discussion with students. Eating disorders are not a choice, or a matter of not liking themselves enough that you can "teach" them out of. There is abundant evidence that eating disorders should not even be discussed with students except by their families and physicians: unlike suicide and drug use, discussion of eating disorders can promote disordered eating and pressure to diet and hide symptoms.

I understand that Discovery has been contacted about this content. It is not just out of date it was NEVER correct. I have archived the content on that page in hopes that it will change (my suggestion would be to delete the topic entirely) and become an artifact of poor grasp of a really important issue. Let's watch.

And, if so moved, speak: 
www.discoveryeducation.com/contact-us

UPDATE 1:10pm Feb 21:

Your voice matters, my friends. Please let me know if you see the content is down?

1:25pm update:
See comment below from Discovery. An enormous thanks to @DiscoverEd for the timely, thoughtful response.


February 13, 2014

NIMH, Cindy Bulik, and first name basis

My age-inappropriate blue streak notwithstanding, the NIMH meeting last Friday was a terrific event. Cindy Bulik, one of the invited speakers, sets the scene well, even the floor plan, in a moving blog post on the experience.

It is such an honor to represent F.E.A.S.T. in this setting and to see eating disorders be featured during this one. I enjoy learning from other mental health advocates and their work, and getting news on research and practice. I came home with a page of scrawled notes to follow up on.

Lovely lunch with Eating Disorders Coalition Policy Director, Jeanine Cogan, too.

Thank you, Dr. Bulik, for the presentation, the shout out to advocates, the mention of Charlotte's Helix, and for describing it all so well!

P.S. Charlotte, you'd be pleased to know that Cindy had a slide with your picture during her presentation, so you finally did made it to Washington DC. And "Tom" was glad to hear of the Helix project and I gave him one of the flyers and thanked him for helping inspire it with a comment in the previous meeting right before I flew to see you. Oh, and he was too polite to point out my iridescent hair streak.... I meant to tell him why, but forgot!
P.P.S. I'm not sure when I will be able to stop talking to you in my head. Not soon it seems. Good job you don't argue back!


February 10, 2014

Predisposition, precipitation & maintaining factors: why they matter

OK, so "parents don't cause eating disorders" followed by a "but" are the bane of my advocacy work.

"But..." we should not have, should not now, and should do all sorts of things.

Begging the question: if we didn't cause it, then how could we have prevented our child's mental illness?

And: "AHA! If it is a brain disorder, why would it matter what parents did or do?" (I've never heard a parent say this, ever, it only seems to come from those who can't bear to let go of blaming parents)

Time to separate:
  • PREDISPOSING
  • PRECIPITATING
  • and MAINTAINING Factors

Predisposition is what I'm talking about when I say "cause." I mean there is something about this person's brain that is different and will respond to the world -- and especially to disordered eating -- in a way that puts them in special peril. This predisposition is largely genetic, brain-based, and is still largely a mystery.

Precipitation is what most people mean when they say "trigger." I'm not a fan of that term because it is used so loosely, but what is generally meant is the "the trigger" part of "genes load the gun and environment pulls..." The problem with this is the importance we then give to The Day a person's predisposition becomes mental illness. The day a young man hears from a wrestling buddy that he vomits to "make weight." The day a dancer's boyfriend breaks up with her and she is too upset to eat lunch. The healthy diet pact in the freshman dorm. Cross-country track season. A bout of flu. 

We put tremendous importance on that moment as if a time machine could fix the illness. It won't. Precipitating moments are, in my opinion, out there waiting to expose the predisposition. If not that incident it might have been another, or nothing anyone remembers later. Just because something happens on a Tuesday shouldn't make us all Tuesdayitarians.

Maintaining factors, however, are the ones we as parents have a great deal to do with. These are the ones most people confuse with "cause." We ARE in control of many maintaining factors and must address them.

For example, parents on a diet is indeed a problem for someone predisposed to an eating disorder. It is likely to delay diagnosis because dieting behaviors and thinking so closely track with what this mental illness makes the ill brain think and do. It's a mixed message: the topic of weight is a public and highly moral mission for one person, but enforced on another member of the family.  Parents on a diet also makes food and normal eating into a joyless, punitive, weight-based activity at the very time a patient deserves normal and socially supportive modeling around food and activity. Picture an alcoholic child staying sober in a bar of not-alcoholic but happily imbibing family. Uncool.

Families unable to reorient their lives toward caregiving -- too busy, too frightened, too scattered, too uninformed, too rigid -- can form a tidy cordon of safety around this mental illness just as a family may do around drug use. We can also do the opposite and be the safety net.

Families under the strain of marital discord, illness in another family member, extremely busy schedules, experiencing a natural disaster, or any of an infinite number of strains can all be "maintaining" to a mental illness that involves enormous anxiety and requires heroic parenting. Just as any major illness or accident requires reorienting and different priorities, so does this crisis.

So, when I blather on about what families need to do and stop doing when a loved one has an eating disorder I'm not talking about us causing or triggering the problem. I'm talking about how necessary it is that we provide an environment that is not maintaining to that illness. We need normal meals, good relationships and communication, supportive clinical teams, authoritative parenting, adults in collaborative harmony, siblings with their needs met. We need, if present, to deal with problems in the family that pull away from good caregiving.

We cannot afford, with ED in the house, the luxury of hiding from issues and discord that might otherwise have waited. This is not "blaming" parents. It is not saying that our actions or inactions could have prevented the illness. It is acknowledging the reality of facing a potentially fatal and invariably grueling mental illness.

If my colleagues in the ED world could stop confusing these different factors -- as we have learned to do with autism and asthma, by the way -- I predict a far more effective relationship with families. We tend to feel "blamed" (and thereby alienated) by the implication that we caused or could have prevented our loved one's terrifying diagnosis. We tend to feel empowered by understanding the power we have to create a non-maintaining environment at home.

February 9, 2014

Brava, Cate! Welcome to ASPIRE

There's a new player in the ED support world: ASPIRE: Adults Supporting Peers In Recovery from Eating disorders.

As the founder, Cate, describes:

...a safe place that belongs just to us. Just to adults with EDs. I see organisations out there which offer education, advice and support for the health professionals who work in the eating disorder field, and I did find wonderful group called FEAST (and the extra wonderful Laura) - an organisation set up for parents of children with EDs - but no appropriate space for those of us actually living this. 

When we founded ATDT and F.E.A.S.T. we wanted a space FOR parents, but we have always recognized our fellowship with adult patients who wanted a similar kick-a$$ attitude and focus on good science and treatment and a true belief in full recovery. The question has come up over and over: where is that support for adult patients?

Being adults we have unique issues. We are responsible for our own recovery. We need to keep appointments, make and eat meals, take medication, and often also take care of our families at the same time. All while the outside world is portraying us as "victims of media", or a "diet gone too far". And I strongly believe that nothing will change if we don't change it. Our lives will not get better, public understanding of our illness will not get better, and medical care available to us will not get better.

I welcome ASPIRE to the support sphere, to the Interwebs, and look forward to being a supporter just as our adult patient friends have supported the parent community.

February 6, 2014

Talking that blue streak about F.E.A.S.T. and Charlotte's Helix tomorrow at NIMH

See my blue streak? Well, I'm wearing it to the National Institute of Mental Health tomorrow: Alliance for Research Progress Winter Meeting, representing F.E.A.S.T. This will be my second meeting, which has also been attended by our Executive Director, Leah Dean, and our Advisor, Carrie Arnold.

F.E.A.S.T. is proud to be part of the alliance and have the opportunity to meet with other advocate organizations and hear about the latest science and treatment advances in the field.

This meeting is of particular interest because Dr. Cynthia Bulik, from UNC, will be presenting on "Advances in Eating Disorder Research." I have a feeling she will bring up AN25K, the mention of which will surely make my peacock blue hair glow.

Packing my handbag with F.E.A.S.T. brochures and Family Guides: wish me luck!

February 5, 2014

Watch AED/F.E.A.S.T. Webinar online

If you missed the recent F.E.A.S.T. conference in Dallas, I hope you'll watch the wonderful AED/F.E.A.S.T. collaboration, a live streamed webinar "Ask a Parents: What Clinicians Can Learn From Caregivers"

I'd love to provide this to all clinicians who are unfamiliar with Family-Based Treatment (FBT/Maudsley). These three families give a real insight into the challenges but also the opportunities of this approach.

There are many myths and odd misconceptions about FBT and this Q&A dispels most. These are not fairy stories of instant recoveries or of some formulaic treatment out of a book. These families are not describing something easy nor are they making it seem impossible. This is the real world of treatment: normal families facing extraordinary situations and facing them with professionals in a heroic way. I am so impressed with the clinicians who supported these families through the process, with AED and F.E.A.S.T. for putting on the event, and on the FBT Special Interest Group moderators, Mulheim and Waterhous, who were simply wonderful!