December 31, 2010

Visuals to lose in the New Year

  • The distorted mirror shot
  • The before and after shots (*special mentions for after shots that look like models... in an implied dig at the vanity of eating disorders.)
  • The sad gaze into the middle distance by middle class European-American girls. Better, absolutely, than the others, because it conveys mental anguish, but it often comes with an inset of an empty plate, fridge, or fork.
  • The "headless fatty" photo illustrating "obesity crisis" journalism (*special mention for the "headless child fatty" which implies such a furtive shot that the photographer probably went home and had to bathe afterward.)
  • The photoshop cinched waist shot
  • The silhouette shot of thin people leaping into the air, which is only a little less subtle than a Viagra commercial. 
  • Scales, scales, scales, scales. 
  • Empty plate. Yeah, I've been guilty of this one. My daughter called me on it and I've been in withdrawal ever since.
Some new images to insert into stories about eating disorders and weight:
  • The normal family eating dinner.
  • Parents holding hands looking with concern at kid.
  • People smiling.
  • Parents and patients of different shapes and sizes.
  • People napping.
  • Stack of medical bills.
  • A pile of books/medical journals/and a PubMed screenshot
Other suggestions?

December 29, 2010

Things I loved in 2010

I'm sure I'll love 2011, but here's some things I loved in 2010:

My husband. Who knew *I* would not only find but so far keep Mr. Right? (I was, formerly, infamous for poor choices in that department.)

My kids. Yeah, I know, supposed to say that and who doesn't - but REALLY. My daughter is one of my most treasured friends and my son is the source of daily delight to me. We all have our optimal eras of parenting, and mine seems to be now. Another adolescence, of course, is upon us, but the first time round taught me important lessons and enormous humility.

My maternal grandmother. Despite repeated exit scenes, she is still with us, giving me the opportunity to for the first time truly spend time with her and get to know her - and my mother - in a satisfying way.

My brother and his new wife and all they are bringing to the family.

Really tap dancing. Up until this past year I was so clunky and plodding at it - with only flirtation with joy - the work is paying off. I'm not looking at the clock. I've settled into my toes and heels in a way that I can spring out of without just falling back in. Next year: precision in even the small, easy stuff.

My friends. For a long time my activist world and my "real" life were pretty divided. Different wardrobe and relationships. Lately I don't feel that division at all.

The F.E.A.S.T. Board of Directors. They are my bosses now, and that's a strange relationship. It is far more complicated than I ever conceived it could be. When it works, and that's usually, it is like having a floor under me and intelligence on call. Special mention to my Executive Committee who are wisdom and spine and clarity in a package of three.

My Blackberry. It isn't fashionable to say so, I know, but I delight in having that palm-ful of connection wherever I am. It doesn't rule me, I use it to enjoy my life and work well. My new Kindle gets honorary mention - that delightful collision of old and new.

The goldfish in my little pond. I don't understand how they do what they do. Right now they are swimming under a layer of ice. Watching them all year just cracks me up.

Travelling, and staying home, both. I used to go places as a travel agent and that'll suck the fun out of it for you - now I go places to connect with a world of people who I genuinely want to see. All this being away from home has also given me an appreciation for being at home.

December 25, 2010

Henrietta and her cells are laughing!

 If I had not just finished reading (and you really should, too - you'll be riveted)
The Immortal Life of Henrietta Lacks I would not have appreciated the back story of the news that Chronic Fatigue 'virus' was actually a lab mistake.

I was one of those who crowed, and now eat crow, about that discovery.

Henrietta and her cells are laughing!

December 21, 2010

Dull name: exciting contents

What a wonderful thing, the Clinical Report Identification and Management of Eating Disorders in Children and Adolescents FROM THE AMERICAN ACADEMY OF PEDIATRICS

First of all, because it is online, full text. Parents can read it and know what their pediatrician knows (or should). Moms and dads can have a direct peek into the state of the art about the illness and how it is treated.

They can read this line, in particular, that may save years of potential misery: "When an adolescent is referred to a pediatrician because parents, friends, or school personnel suspect the possibility of an eating disorder, it is likely that disordered eating is present." This is critical information. Parents generally report feeling something was wrong, and it is validated by those around them. But they doubt it, and fear it. If the pediatrician minimizes, in an attempt to be reassuring, a long chain of missed opportunities can ensue. The parent needs to know that those worries are usually valid - and ideally their concern should be taken as a strong indicator of a problem.

This line, too, is critical: "Pediatricians must, therefore, not be lulled into a false sense of security if the adolescent denies all symptoms." Amen.

On the other hand, *I'm* critical of this line: "The parents’ reaction to the illness should also be assessed. Parental indifference or denial of the problem or inconsistent views about treatment may affect the course of the illness and recovery." It's true, of course, but could be phrased better. This sounds like "These parents can be obstructive." and fits into general disdain for parents that, while it is certainly true in some cases, is not a great starting point and feeds into lingering doubts about causation. Let me edit it: "Parents are often confused by the symptoms and may harbor unfounded fears and misconceptions that can, if unaddressed, affect the course of the illness and recovery. Your role as physician is to start the process of parent information and support that will lead to a positive outcome."

But this, this line is buried in the middle but could really use bolding, underlining, bells, and whistles: "The pediatrician should identify other potential psychiatric diagnoses (such as depression, anxiety, or obsessive-compulsive disorder), which may be a cause or consequence of disordered eating."

As far as I know, that is the clearest statement in such a publication to draw a connection between the eating and the psychological symptoms that acknowledges that the relationship may be bi-directional. Most recommendations talk about the disordered eating being a consequence of psychological symptoms, but not the cause. I am dismayed daily  at this gap in the literature so cheer for it here.

Bravo, AAP, for a clear and useful and evidence-based review and recommendations. This is a tool we will be using for a while!

December 20, 2010

in Sickness and in Health

As a devoted fan of xkcd (I've never been cooler in my daughter's eyes than when she found out I even knew what xkcd was...), I've worried along with other fans about his recent health problem. So it is with extra love that I share a recent kick-ass moment (excuse the profanity):




Two trains, same track, no collision

In an emerging field it is natural that we'd have a lot of uncertainty about how to treat an illness.

What is perplexing in the eating disorder field is how two completely opposing viewpoints on the role of parents could keep steaming toward one another without a crash: whether parents should back off or be engaged is one. Because this is a complex set of conditions and there are so many elements to debate, what often happens is we find allies in one area who disagree on another, derailing the issue at hand. Or a debate on one aspect of theory gets blown off the rails by a skirmish over another.

Most painful to me is when the debate on the parental role pits parents against parents. I often ask eating disorder professionals to take a stand in their field against other professionals and clinics operating poorly. But I myself try not to confront other parents - even those out there promoting ideas antithetical to my own message. Ouch. Hypocritical much?

I just watched a video of a mother advising parents to do the exact opposite of what I do. She told parents to fix themselves, let their children control their own food, back off, and realize that it is not about food but about deeper psychological issues. Had this message come from a clinician in the field I'd have been blogging it. But it is a fellow mother so I'm queasy. So much so that I'm not even telling you who or where it is.

There probably is a way to respectfully engage this mother's point of view, and I lack the skills to do it. I have a really thick skin now about critique from the profession but still get all weepy when parents criticize me. Earlier in my work I would have said "who am I to judge?" and now I feel that as a part of a huge community of families of like mind it would almost be bullying to call down that community on an individual. I have all kinds of justifications for not calling out parents and there do need to be boundaries on this - parents can't be expected to be held accountable in the same way as professionals. Parents - especially those who have lost their children to death or estrangement - deserve a special consideration, period.

Yet a sad truth is that much of the message out there for parents to back off, watch from a distance, leave food and therapy to the patient, and see the illness as a sign of failure or trauma in the family is coming from fellow parents. The message is no less damaging coming from moms and dads: perhaps more so.

The trains need to get close enough to see one another, or maybe they need to crash. I'm struggling with this.

December 19, 2010

image vs. effectiveness, coping vs. acting

Earlier this year, a friend made some observations after her first eating disorder event that stick with me - I think of them nearly every day. She said two things struck her. One is that treatments seem to be sold to families on the basis of image rather than effectiveness. The other was that the role of parents and family was more about coping than taking action.

It struck me that this is a good description of the difference between the F.E.A.S.T. community and some others. Effectiveness and taking action are without a doubt our focus. Our emphasis on evidence-based practices and parent engagement (with ALL treatment, not just FBT/Maudsley) is what draws us together. We are hoping to help parents cope but not helplessly or just for their own benefit. We see parents as active, engaged, informed - not just suffering. We see parents as a part of treatment, not an additional problem to manage.

Our community is focused on effectiveness, evidence, outcome. We don't just ask for access we are coming to expect it. That attitude probably comes across as demanding and is often mistaken for over-involvement, but we look at eating disorders as an illness where parents have no less responsibility than with cancer or brain injury. This is a new era for parents and eating disorders, and a needed one. We needed to step up, and we also need to be taken seriously.

December 18, 2010

My left parietal lobe


I talk about other people's brains all the time so it is only fair that I share something about my own.

I have dyscalculia.

What's weird is that I didn't realize this until VERY recently. Figuring this out, by accident of course, has been like looking at one of those optical illusions where once you see the other image you can't switch back.

I started talking to friends about it lately, online and in person, and I'm finding a lot of people relating the same symptoms, to differing degrees. Also differing levels of defensiveness, resignation, and embarrassment. I have experienced all three, but mostly an intense curiosity about it. This discovery has explained SO many things about the trajectory of my life. Telling right from left, reading a clock, dealing with maps, doing simple calculations in my head, the complete inability to play backgammon... Why learning a new sequence of tap steps is so much harder for me than my classmates!

I know now that I found a zillion ways to compensate for these gaps in my brain, and that these compensations helped me in other ways to be successful - and also that I "decided" not to do certain things in life and "don't care" about certain things that may be more simply explained as "I can't, therefore I choose not to value that." Despite this number dyslexia I still tutored people in math, ran businesses, got an M.S., and manage my family's finances. I probably worked four times harder at these things than other people might, but I get by.

One thing I've discovered as I've researched this is if you can't read and write well people judge, but math weakness is written off as less important. Also that weakness in math may be associated with greater ability in writing (this, like other possibly apocryphal tales, is the kind of stereotype no writer will dig too deeply to dispute), but not the other way around.

I wonder, lately, if there had been a name and a recognition of this when I was a kid whether I would have been discouraged from doing things, or failed to try. Being labelled - an active debate in all mental health issues - is a double-edged sword. I'd like to think the naming of things helps develop tools and insight, rather than stigma and defeatism, but of course I know both are surely true.

December 17, 2010

Winter coats during school hours

In exchange for showing you this very amazing video below (they're not smiling but I defy you not to!), a poll:


Where do your older kids put their winter coats during school hours?
1) Wear them all day and bring them from class to class
2) Put them in locker/classroom/storage room
3) Don't wear them at all because there is no room in locker/classroom/storage room
Now, enjoy your treat:


December 16, 2010

Teleconference for parents

MentorCONNECT Presents: Family Healing and Communication

Presenters: Dr. Kimberly Dennis and Dr. Stan Selinger from Timberline KnollsEvent Description: Are you in recovery from an eating disorder, surrounded by well-meaning family and friends, yet you often feel frustrated by your inability to ask for and receive the kind of support you really need? Are you a significant other, family member, or friend who has a loved one in recovery, and you often find yourself struggling to know what to say and do to show your support?
This special teleconference is designed to serve as a guide for family members, significant others, and friends who are in a position of supporting a loved one through the process of eating disorder recovery.
Dr. Kimberly Dennis and Dr. Stan Selinger are experts in facilitating family communication and healing. Together, they will lead us through a teleconference that focuses on frequently asked questions and practical tips and techniques that significant others, family members, and friends can use to build and deepen the bonds of support with a recovering loved one.
Recovering persons and their families, friends, and significant others are warmly encouraged to attend and participate together.
When: Wednesday, January 12, 2011
What time: 8:00 - 9:15 p.m. Central Time

The quality of the oxygen

The decision of which residential treatment facility to choose gets a lot of attention. These clinics have lots of reasons why you should choose one over another, and people debate this issue pretty emotionally. But here's the only question I want to know: what happens afterward?

Residential care without a real discharge plan for ongoing care is meaningless and dangerous. It doesn't matter how good the care is in a hospital or residential center if it ends without continuing the care in a consistent way at home. It's like debating the quality of oxygen you use to resuscitate the patient. If you're just going to throw them back in the water when they regain consciousness it really doesn't matter.

It takes a long time, many months, to begin recovery and get started on living a life free of relapse. Residential care doesn't last that long. No matter how perfect the placement and ideal the therapies in the center what matters is what is going to happen at home. Instead of focusing on what happens in the center, I believe the best center is the one that focuses on assuring a well-trained, safe, and nurturing home and family to come back to - one with the very same protections and supports and messages as were offered in the center.

Here's the story I hear over and over: "She was doing so well there and really wanted to get well. She was motivated and ready. Within a week of coming home she started losing weight. The center won't take our calls now, and our therapist here says it is up to our daughter to 'work the plan' and 'use her tools.' We feel even more helpless than before she went in. She says we're too critical and that we stress her out. We don't have money or insurance coverage to go back and she says 'I'm fine.' We don't know what to do."

We can't send our kids off thinking that they'll come home and teach US what we need to do. We can't think that residential care will fix the problem or do our jobs for us.

ED has a long-term discharge plan, believe me. The time to decide our family's plan is when deciding on treatment, and the time to put that in place is from the first day.

December 15, 2010

Flak (over) Swans

Of course there's buzz at my dance school and among my online friends about the Black Swan movie. When I first heard that the two stars - neither dancers - were instructed to lose weight for the roles I cringed in advance for the inevitable "will Black Swan promote eating disorders" talk, the conflation of eating disorders and disordered eating, the pro-ana talk, and the minute examination of these actors' bodies. Not to mention my motherly concern that these two young women might trigger mental illness in themselves. Losing weight like that is like trying heroin.

At the same time, there's some talk about ballet dancer bodies elsewhere - and backlash against that talk.

I had planned to keep my head down about the above issues. Dance is important to me personally and the relationship to - and professionally the dependence ON - disordered eating and mental problems is not something to be ignored. But rarely does the conversation get beyond a surface level. Dance is not the problem. It is what we do as - and to - dancers that is the problem.

So it is with delight that I note my friend Marcella brings it all back to something "completely different" and yet entirely relevant. As a mother, a dancer, and a human being this news piece is tonic to all that is toxic around dance. It is a delightful piece, and the only pity I felt as I watched it was for myself before I saw it - for expecting anything less.

December 14, 2010

hand-stirred

Before ED, and before that when we moved to town and I became a full-time writer, I was a soap-maker. These in the picture are either Rosemary, or spearmint bars. The one I'm holding below, looking every one of 13 years younger, is almost certainly a Jewelweed bar. Good for poison ivy. That one I scented with Juniper oil.


We kept goats named Jack and Jill and made goatsmilk soap, and the house smelled of essential oils and clean warm milk.I spent Saturdays alone in the kitchen soapmaking in late summer, after each week of homeschooling on our little farmette in the woods. The soap had to age for several weeks before it could be used so by this time of year I would have already made all my calculations and stirred until my arms burned and poured and cut hundreds and hundreds of bars. This was peak holiday season. Evenings I beveled the edges with a sharp knife, cut strips of muslin for wrapping, labeled, dated, crated - handling each bar as much as it would be when actually used. We advertised them as "hand stirred" but everything about them was about hands, down to when we handed them to the buyer in a brown paper bag, like produce.


During summers my daughter and I set up shop at fairs in neighboring counties. She liked the shows with live music. I liked the shows with indoor toilets. We shared our booth with a friend who made beeswax candles. Our girls stood outside the booth with an antique pitcher and bowl and helped people wash their hands with our soap. After that, most people bought, happily, charmed. We put out bubbles for the passing children, and a cooler of food behind the table.The favorite bars, every show, were always the cinnamon: constellations of spice under the surface.


Our family and friends have long since used all the soap but looking at these pictures I can smell that tray, and I can feel my fingerprints on a fresh bar. The prickles on my wrist where I splattered lye, the drag of the wooden spoon as the liquid warmed itself and then saponified into the exact moment it could be poured.

I don't miss the exhaustion of getting home in the dark after a show, out since before dawn and still with a car to unload and the chickens to lock in. I miss the handfuls of fives and ones that she and I would pour out on the table - the occasional $20 - to the delight and amusement of my husband, who had a 'real' job. I don't know how much money we made those years, but it felt like we'd earned it well.

December 13, 2010

TOM - theory of mind, not the shoes or the time of month

When I see "ToM" I have a quick blush at "time of month" and then my favorite shoes and then: one of my favorite concepts: "Theory of Mind."

Those familiar with autism and Aspergers know this idea well - but I think parents can add it to my hit parade of vocab words: alexithymia, anosognosia, ego syntonic.

In the best description I've seen, by my friend Cathy, ToM is "the ability to mentalise; i.e. to identify and understand your own emotions and others' emotions - and to respond 'appropriately' to such emotions....It is suggested that while 'normal' (non autistic/non-Aspergian) children learn intuitively to 'read' other people (and themselves), children with Asperger's syndrome (AS) learn this process intellectually. Most 5 year old children are quite adept at 'reading' other people - by their facial expressions, body language, tone of voice etc., but children with autism/AS have difficulties with reading body language and using it in a way that other people understand. When I was a child I related relatively OK to my close family, but I couldn't work out other people, including other children. As a consequence I became sullen and depressed at school, and at times, mute. And, I was very, very gullible and easily 'set up' or taken advantage of by other children."

How can this relate to eating disorders? "If a child with autism/AS develops an ED it may because they're struggling with their own emotions/feelings, and they are less likely to understand the effect that their illness is having on other people."

There is a growing awareness that Aspergers may be going undiagnosed in girls, especially, as it presents in a different way than in boys. More and more researchers and clinicians are noting similarities between the ToM thinking of eating disorder patients and those with Aspergers - some even calling anorexia a form of female Aspergers.

But then, one researcher I know dismisses this idea, saying "The brain has only a certain number of ways it can malfunction, and ToM is one of them - many brain problems may present in the same way, but that doesn't tell us something essential about this particular illness or how to treat it."

December 12, 2010

No, THOSE come with the package, we're talking about OTHER supplies

An excellent example of parent activism and I hope it is successful: Really, IRS?

I breastfed both my kids. And yes, one was adopted! In the latter case, although I came with the proper equipment, I had to also use formula in a contraption that made a mockery of the low-tech art of breastfeeding. I was certainly the only mom at La Leche meetings carrying Similac, and also the only one having her chest stared at!

December 11, 2010

Happy feet, sniffly nose



I rose from my sickbed last night to trudge to town and join my tap class in front of Santa's workshop - there were carolers and bagpipes and ballerinas and some teen rockers as well. It was cold, I had a cold, but for once I have to say I really DID relax and have a good time. Instead of oblivious adrenaline, I was aware of smiling without the fixed grin of terror. My fellow tappers are so good at this - the dancing and the performing - and I've always just hoped I'd not embarrass myself or them. Last night, perhaps in the resignation of sniffly low expectations, I just danced. I think Mumble would have been proud.

Family Week

I have never experienced "Family Week" because our family did not go the residential treatment route. I'm pleased to hear it is changing over time. I applaud the idea, in theory, of bringing families together at the treatment site to learn about the illness and treatment and work more intensely as a family toward recovery.

But I remain uncomfortable with the idea for two reasons. One is a concern that family education can, if done in a certain way, send a message that disempowers parents, implies blame, and sets the clinic up as the safe and caring family figure in the patient's life. It is rarely meant to do so, but families often report feeling filled with guilt for missteps, for being wrong, for causing harm, and ending the experience feeling superfluous to the process. The focus on parents needing to listen to their kids (as if their failure to do this before was part of the problem), communicate better (is there a family that couldn't do more of this?) often leaves parents feeling humbled and contrite - not aligned and clear-headed. This is distinct from the kind of family education that aligns the parents with the treatment team, orients siblings supportively, teaches about the neurobiology of the illness, coaches parents in the clinic's approach to responding to symptoms, offers tools and resources, and creates a seamless discharge plan.

But my primary concern is that Family "WEEK" needs to be 24/7. Ill children need to be with their families and parents need to be present and receiving full time training for the transition home - where the real work begins. When I bring this up to those operating in the residential environment they protest that parents can't, won't, or don't need to do this. Well, I think that all depends on how this is framed by the professionals. Yes, the family that can easily alter their lives to be there full time with ill hospitalized children is rare. But if the risk is of lifelong illness or death then families find a way - or at least have a realistic sense of the risk of not doing so. If we were talking about a critical burn injury, chemotherapy, or a car accident no one expects their child to be taken to another location and fixed - with two weekly Skype conferences to replace parental contact. No one talks about inconvenience and expense as if they were a cost-benefit analysis.

I would like eating disorder treatment providers to start EXPECTING parents to be there 24/7 and to make that the model of care. Will that be hard? Yes. Will that change the model? Yes. Will it be expensive? Compared to what: what is the value of a life, a family?

December 10, 2010

Spark, trigger, cause

There's a sloppy tendency to use a bunch of words to mean the same thing: "cause."

Spark, trigger, precipitate, risk, fall, contribute, lead to...

Here's how to tell: if the word is being used to explain or justify a treatment approach then it usually is meant as "cause."

I spoke at the recent Renfrew Foundation conference on the topic of agnosticism in treatment. This made more of an impression than anything else I said. The idea of being agnostic in what causes the illness pulled the rug out from so much that we are used to saying and thinking and arguing about eating disorders. Go ahead, try to discuss treatment without using causes. It's difficult. In the process, let's see if all the euphemisms for "cause" have to be set aside as well. Let's ask ourselves if there are other illnesses in which those words are used in the same way.

For the price of a gently used car

I'm very proud of F.E.A.S.T. A group of us dreamed of an organization FOR parents that would be supported BY parents - and that means paying for it as well.

Most nonprofits rely on donations not just from members but from organizations and businesses related to their work or community. F.E.A.S.T. has taken the stand that in order to remain independent we need to turn down advertising or sponsorship and even donations from clinics that treat eating disorders. This is not to reject their support, but to make sure our compass is set by those we serve..

This stand means we operate on very little money. I am full-time unpaid staff and all of our volunteers do so without compensation. We have no office, computers, or other usual infrastructure.

Despite these restrictions, and on a yearly budget of the cost of an average used car, F.E.A.S.T. manages to assist hundreds of families all over the world, influence policy, speak out in the media, and save lives.

We listen, we reach out, and we have a growing voice on behalf of families.

Once a year we call on our members to show their support tangibly, with a donation of whatever amount they can afford. These financial contributions keep our little vehicle going for the coming year. Send enough for a tank of gas, or a transmission. Keep the headlights on for an evening or the whole year. We exist to support families, and do so with family support!

DONATE NOW

December 8, 2010

Preventable death

Another preventable death.

Another family given the right information but not able to follow it through or even believe it because professionals in charge didn't know what they didn't know and there was nothing in place to tell them.

Another life lost, and a family stricken, and those who tried to help.... ravaged.

I am asking, today, whether eating disorders kill. I no longer think so. It is us. It is lack of action and anger. It is pride and professional courtesy. It is faceless invisibility of those who escape the fire but don't go back to pull others out. It is expediency and cost effectiveness and priorities. It is the self-protectiveness of exhaustion and the self-satisfaction of good fortune. It is boundaries, and insecurity, and lack of vision. It is feeling like a cog in a machine instead of the one link that can refuse to connect. It is helplessness and ambition and process.

It's not anorexia or bulimia. We do know enough about THOSE. If we chose to we could treat THEM.

For those who tried: you have nothing to answer for. The rest of us do, and will.

Denying the word "denial"

Can I just say how much I dislike the word "denial?"

I find it one of the most condescending words in the language. It's one of those wobbly words you can't argue with, but we all know the implications. It is willful, it is conscious, it is weak. It isn't a vicious slur - more venial - but even that gives it a scent of "if you had even a bit of self-knowledge you would be above it." The slight Freudian tinge confers a clinical distance and superiority to the speaker that is rarely lost on the one spoken of.

"He's in denial." "They're in denial." "I was in denial."

I can't think of one instance in which this is a helpful concept.

"He is afraid." "They have not fully grasped the seriousness." "I didn't realize." These are all, I would submit, more accurate, less of a character judgment, and admitting of hope than the others.

In a world that does not help us understand mental illness, filled with outdated notions and pop psych, and few coherent messages it could be said that our society is "in denial." But I suggest this: "We are just waking up to the hope and possibilities for improved mental health throughout society."

Catch and release

Do you fish? The current reality for most eating disorder patients is a lot like "catch and release." Feeding people to the point that they are no longer gasping, and then sending them back out into the world to cope with it... not a great strategy. We KNOW this doesn't work. But we keep doing it because we use a crisis-based medical model combined with a choice-based psychological model.

Everyone in the system hates it. Everyone externalizes the problem: "it's expensive" "there are legal issues" "insurance works that way" "our health system doesn't work that way" "it's coersive" "it's so challenging for the patient" "it can't be forced" "true recovery comes from within" "they have to do it on their own sometime..."

It's crap. Patients are not better able to manage themselves at a minimum weight/minimum stability. In fact, that is the exact time they are least likely to manage. It is the world that needs to change - the illness isn't going to. Here's the ONE change we need to make: continue the same high level of support/monitoring for months after medical stability. In other words, still catch, but don't release until swimming easily in deep waters. And take account of the hook damage and the handling.

Our catch and release system is creating chronic illness. If we don't change the system, then it is not the illness to blame - it's us.

December 7, 2010

Parents won't or parents can't?

Here's a sad truth: not all parents WANT to be in charge of re-feeding or monitoring eating disorder behavior at home. For some families it is a relief to be told that the solution is to send them away to fix their problems and they look forward to the child coming home well and grateful.

At least that's what I hear from a number of clinicians who have encountered this phenomenon.

I always wonder whether parents really understand their options. If they knew how long and difficult recovery is, that a few weeks or months is only the start of the process, and that the hard work will be theirs at home later anyway, they might make different choices. I think if parents were told on no uncertain terms just how hard this is going to be NO MATTER WHAT THEY CHOOSE, and just what will be necessary to best address it parents would frame the question differently.

If parents had the opportunity to get back-up and immediate hospitalization at will during the re-feeding process I think far more would be able and willing to take the responsibility. If parents had truly supportive and skilled clinicians who believed in full weight restoration and cessation of eating disorder behaviors as a restorative step to allow recovery, and truly believed in the power of parents to take this part on, I don't think I'd be hearing so much of this annoyance at parents who "refuse" or "are in denial" or "don't want to" do the work.

If this was the way it was framed: "save this child's life" I really don't know that many parents would say "no, I don't want to try, you do it." Families choose between two terrifying prospects: being on their own at home with angry, frightened, frighteningly sick kids, or sending them to care that they are led to believe will solve the issues causing this problem. That's not abdicating responsibility or denial or the easy way out. That's raw, cruel fear and love. That's mothers and fathers faced with the Judgment of Solomon, not a lack of caring.

December 6, 2010

Is compliance the active ingredient?

Here's something you probably don't expect me to say: I'm disappointed by the recent Maudsley data as much as I'm pleased. In the optimistic glow of recent good press it must also be noted that it is not all good news. When I first saw preliminary data in London in February I braced myself - this is not the 85-90% success rates of earlier data.

Doubling expected success rates is absolutely wonderful. Considering where we're starting from, and the lack of alternatives, IT IS STILL THE BEST WE'VE GOT. Treatment "as usual" out there - and the majority of people with eating disorders don't get any treatment - has dismal success rates: about 33% fully recover.

It's bizarre that people see this research and say "well, it doesn't work for everyone so let's apply this knowledge to only a small group." I see it and say "we need to make whatever is working in this stronger so it will work for more people."

And I ask myself, as usual, what is the "active ingredient" of Family-Based Maudsley - or ingredients? It could be, as I hear others say, the changed stance of the family, or the alliance with the clinicians, or the lack of blaming of patient or family, or the power of family cohesiveness. But I think it is compliance with eating and food behaviors. No other treatment approach focuses on that except residential, which at most offers six months of compliance - almost always far less.

Parents keep their dependent kids eating and in therapy.

If compliance with eating and behaviors is the active ingredient that doubles recovery rates then this can be generalized to more treatment. It could become normal for eating disorder patients to be relieved of responsibility for food and choices about activity levels or compensatory behaviors. It could become normal for patients, once diagnosed, to be monitored indefinitely and hospitalized or taken care of at home as needed - no more repeated weight loss and going back to behaviors. If this is the active ingredient it might be separated from the issue of what other treatments are being offered and used concurrently: CBT, DBT, CRT, IPT.

Compliance with nutrition and ED behavior plans could stop being an idea that is only used in children and in emergency inpatient situations. I wonder how the success rates of ALL therapies would rise if this one active ingredient of ONE - FBT - was expected across the board?

December 5, 2010

Book Review: "Life Beyond Your Eating Disorder" by Johanna S. Kandel

I get a lot of books to review. I read them all, but I only review the ones I can recommend. This one wasn't for review: I got this book as a gift from the author, who I've lobbied with at Eating Disorder Coalition Lobby Days and get to see at events throughout the year. Johanna is one of those people who I describe as genuinely warm. She greets others, even strangers, with warmth. She speaks to audiences with energy and warmth and a way of feeling personal even in a roomful of people. I mention this warmth because it comes through in her book, Life Beyond Your Eating Disorder. She's warm, she's engaging, and I feel as I would if I was learning about an important issue about which Johanna is truly experienced and confident in explaining - no drama, no lecturing, but lots of insight.

You can, actually, judge this book by its cover. No empty plates, no tortured teens, no distorted mirrors. This is an image rich with metaphors we don't need to belabor. It is also true to the title, and the content. This is a book filled with tools patients can use to understand, think about, and use.

It's not about food. The book, I mean. This doesn't mean Johanna doesn't connect eating disorders to food or eating but that she does something I wish everyone would: make the nutritional part of recovery as a given. Eating disorder recovery isn't something you do before you restore the brain - but of course restoring the brain isn't the end of recovery either. This is a book of ideas and tools to understand and learn to live "beyond" the illness. As much as I emphasize the brain restoration I do so only as the necessary way to GET to the psychological recovery - which generally involves varying levels of cognitive work.

I adore a good metaphor, and this book is FULL of them: really good ones. She has them for black/white thinking, for perfectionism, for dealing with others, for re-learning life skills.

My favorites? The crayon box, artichokes, and the drawers. Used that last one myself just today.

She also has two completely unique chapters that I have to preview for you. One is about how to "stamp" the ignorant in our lives. Her take on this is really, really good and could be helpful for parents as well - as I know we can sometimes want to bubble wrap the world to keep our kids from hearing the wrong things. The other is about Brideorexia - a topic I thought I understood a bit but she illustrates in vibrant detail. Have a recovered loved one? Read this chapter before they get engaged.

I'm often asked what books are good - or even which ones are "safe" - for eating disorder patients. My answer is usually "none" until they are recovered, and "very few" when they are. I can recommend this one for adults in recovery, however (Children and adolescents, in my opinion, need to focus on the messages from parents and clinicians). This book's message is empowering, family is not marginalized, and it could be appropriate regardless of treatment approach (including Maudsley). Because the author leaves out the food and eating advice this won't conflict with treatment philosophies or approaches. Because the skills and information in this book are positive, useful, and warm - it might make a good family read and discussion. Adult older siblings, in particular, might benefit from reading this and discussing it with parents.

We need more books that convey the kind of warmth and insight that Johanna has created here. I look forward to more from her, too!

Having it all

I just hate disagreeing with Gloria Steinem. I mean, I agree with everything she says about having it all. Except.... connecting it with eating disorders.I grew up in an environment of an exciting social movement that taught children to value themselves for actions and not appearance and with an appreciation for diversity of appearance and action: in other words a college town in the 70s amidst feminists and civil rights activists. Too little of that has translated to the mainstream, and much has been reversed.

I'm watching the eating disorders world re-discover and re-ignite that social movement but it often seems to be unaware that we've been through this before. Sadder still, too many in the eating disorder world are being distracted by these revelations into thinking that they are the cause of eating disorders - leaving me in the bizarre position of seeming to be against messages that I do believe in.

We do need to reclaim the gains earned by feminists and social activists, period. Treating women and treating our bodies as commodities and value judgments is wrong and damaging.

December 4, 2010

The Rejection Therapy Challenge

My family has been talking about Take The Rejection Therapy Challenge lately.

My daughter is a designer, I'm a writer, and my dear hubby is in sales. These are not fields to enter if you're undone by rejection. These professions COURT rejection. My young son? A musician. Oy.

My folder for rejection letters is labelled "YAY!" Because my job is to get a bunch of rejections. That's the price of getting a few "we are pleased to" letters as well. I don't think of rejections as a bad thing, but a good thing. I revel in the nuances of the emailed vs. mailed letters (mostly emailed these days). Signed or unsigned, with personal note or no. The auto response is expected. But most rejections are actually a lack of any response at all. I know lots of writers, even some really successful ones, and their rejection rate may be lower but they still get them. And you know what? They're free!

My husband was my tutor on this, early in my career. He wasn't having all the slobbery weep-fests over postcards from strangers. He refused to join me in the conviction that I was doomed and incapable. It took 48 rejections to sell Eating With Your Anorexic, by the way.

Speaking of which, this month EWYA - as my family calls it - went out of print. The end of a really good ride.

And, as it happens, I have three other manuscripts to sell - and a stack of rejections to show for them.

"Yay!"

December 3, 2010

Too honest?

Cate asked a question in the comments recently that I find really important:

"Laura, could I put another query out there along a similiar line? - this time regarding honesty when answering our children's questions. I know everyone's gut reaction will be that you need to answer your children's questions openly and honestly. But if we've already agreed that there may be something to this topic of planting ideas in their heads, then is it possible for parents to add to this problem by being too honest? - especially with those children we may already fear to be genetically predisposed to this (and especially if we are ansering questions about our own eating issues). This isn't something I've thought about before (my own children are still too young), so I would be really interested in hearing other people's thoughts on the topic"

I believe in parsing "honest" with "wise silence." Particularly for Americans, and most particularly in our psychotherapy-Oprah-express yourself culture, there is a premium on expressing everything and a sense that leaving anything out is equivalent to lying. I used to be much this way. But getting older and having 22+ years of parenting behind me I'm seeing that talkingtalkingtalking can actually be the lazy way out. If everything must be said then there's no need for judgement, for parenting. We're not parents, we're parrots.

I'm not sure exactly what kinds of disclosure you're talking about here, but I can imagine some particularly around disordered eating. Like, how to deal with different types of food if you can't use the idea of "good" and "bad." Or "do I look good in this dress?" or "Do you ever worry about being fat, mommy?"

Psychotherapists have some good tools for this. Like reflective listening, like "hmm" and "mmm." Like "you seem very anxious about that issue. Do you want to talk about it?"

A lot of the questions our kids give us, especially when they're ill with anxiety, depression, dysmorphia, or OCD, don't HAVE answers. Or at least the answers aren't the point. "Do I look fat?" is such a question. "Am I a bad person" is also not a real question as in having a yes/no answer. "Is this enough food?" may HAVE an answer but if the question is being used as a "checking behavior" then answering it may not be a good idea.

These are some of my thoughts. Yours?

December 2, 2010

Where do we start?

I make no secret of my conviction that the anti-obesity movement is misguided and harmful. Yes, I know that sounds as if I'm saying let's all sit on the couch and eat chips and donuts - I'm not. I'm saying we really don't have any known way to permanently reduce weight and we really don't know how to measure healthy weight even if we did. We do know how to promote health, and that is what we should be doing: ordered eating of a variety of foods served by adults and eaten as a family and with pleasure, an active lifestyle, regular sleep, managed stress, and life with purpose.

The risk of this anti-obesity mania is also well-known. Stigma for larger people, rampant and unhealthy disordered eating, and possibly the triggering of eating disorders. Personally painful: it masks real mental illness by making it seem rational when someone becomes ill. And this: it is causing so much misery out there for no purpose. Let's promote health instead, and stop using weight as a proxy for every damn thing wrong in life.

Want a perfect example of how toxic this is? This note came from a reader, Whitney, and this journalism is just what we don't need: it describes heinous parenting behaviors and doesn't give a clue to how wrong it is. It buys into the certainty that obesity is self-imposed and worse than any fate in life. 
"Hi, Laura. I’m a follower of your blog, and came across this story which I thought was truly horrendous and sick:
http://abcnews.go.com/GMA/fat-babies-parents-put-fat-babies-diet/story?id=12216642


For some reason, I thought this might be of interest to you, blogging wise. If there IS anything “good” out of this article, perhaps it’s the short mention that your children are most likely going to develop their eating habits from their parents. As someone who battled anorexia, I can assure you my parents never did anything to “endorse” the sick rituals I went through, but DID help me rediscover my own healthy, recovering “normal”—which happens to be very similar to theirs"

December 1, 2010

The inability to construct a future

So much to learn, but progress does happen - in understanding and in explaining what there is to know:
Clear New Insights into the Genetics of Depression

Also on the science front:

"it doesn’t work in patients. And patients are what matters." News on a failed drug, corporate evil, and what this could mean for how we research depression in general.

Kids (and Animals) Who Fail Classic Mirror Tests May Still Have Sense of Self I'm thinking it's the mirror that's broken...

You've probably seen this one already but I just have to make a Perfect Pith Award to Dr. B for the line "anorexia is not a good contraceptive" in Women with anorexia nervosa more likely to have unplanned pregnancies.
 
And leaving you with this:
Participants Needed for Study of Sensory Integration and Body Image in Anorexia Nervosa
Researchers in the lab of Dr. VS Ramachandran in the Department of Psychology at the University of California, San Diego are recruiting individuals ages 13-55 who are currently underweight and have a diagnosis of anorexia nervosa.  We are studying how sensory integration relates to disturbances in body image.  The study involves 1 hour of behavioral testing on the main UCSD campus for $20, then (optional) about 3 hours of brain imaging (MEG and MRI) with tapping of clothed body parts at an imaging center near campus, paid $20 per hour.  For more information or to inquire about participation please email Laura Case at the Center for Brain and Cognition, UCSD: lkcase@ucsd.edu.

Mom power

I've been learning more about the Looking Glass Foundation in Canada lately, prompted by the appeal the other day (she's in third place if you want to go start voting!) and some media coverage about a proposed center.

I didn't know that the Foundation was created by a mom (you'll note we star any organization run by or devoted to parents in our list of resources at F.E.A.S.T.). I also didn't know that three moms have been working for a decade to open a residential facility for eating disorders in British Columbia.