December 30, 2012

no, I'm not talking about you

I don't know if this will amuse or enflame, but I wrote this to the Around the Dinner Table forum today. I welcome your thoughts:

As my end-of-year, end-of-era contemplations continue, I thought I'd bring up the issue of disagreement between parents. I've mentioned before that in my history of ED activism it has not been debate with other activists or clinicians or patients that has caused me the most pain: it is with fellow parents. The nature of these disagreements have followed certain themes. As a new generation of parent advocates and activists come up, I thought I'd share some of the patterns:
  • One Note Sallies. I struggle with certain people who have only a single interest that blinds them to other issues, to hearing other people, or to the complexity of how their one note fits in the larger symphony. This singular focus can be positive (something that worked) or negative (the thing that did not). It is rarely convincing.
  • Confusion of people with ideas. Each of us is complex and very few of us share agreement on very many individual points. Befriending or making an enemy based on a single point of agreement is satisfying only in the moment, but keeps us from respecting one another as full individuals.
  • Time-freezing. We evolve as thinkers over time. We need to give ourselves and others the chance to learn, to develop, to change. What we see on a given day is only a single frame, and holding someone to the standard of a former POV is unfair. The point is to grow together.
  • Personalizing. It leads people to think that others are talking about them when they are not, or ignoring them when they are not. The truth is that most people are really thinking more about what they are themselves saying and not what others are saying or feeling. Sorry: it really isn't about "me." And no, I'm not talking about you.
  • Enemy by association. It is a depressing reality that people will hold you to the standard of your lowest common friendship. People who reject and ignore others for associating with the 'wrong' people with the 'wrong' ideas end up terribly righteously correct: alone in a corner.
  • Anger in the form of caring. The language of caring about others doesn't always mask the actual fury and intolerance driving the speaker. You know that cousin who ends her criticism of your lifestyle with "I just thought you'd want to know?"
  • Eating worms. I often hear from people that they feel no one supports them and that they are excluded and undervalued. I also note that these are the same people who: do not read what others write, do not FB/tweet/blog/review/forward/LIKE/comment on/laud other people's work, do not ask advice from others, do not remember the names or work of others, and don't like anyone else. There's a lesson there.
  • Data bullying. Listing data is not persuasive. Neither is listing credentials or personalized attacks. In an ideal world, this sort of bluster would simply be a poor reflection on the doer, but in our world we are far too vulnerable, deep into our learning curve, and all coming from a different intellectual background. Have you ever seen a really smart kid eviscerate a classmate with high-flown statistics above even their own intellect? It's like that.
  • Strategic lack of response. It's almost an art: the willingness to not respond to someone who has taken you seriously and bravely responded. It's brilliantly condescending to not  even bother to acknowledge it. I love this one. The lack of respect is dazzling. The moral superiority: bravo!
I'm sure I could come up with more (I've been at this for too long), but instead let me take time to laud those among us who do not fall into any of these traps. You may not even know who they are, because they aren't the flashy ones. Those who stay above the fray and remain steadily supportive and wise. I admire those who don't take the bait, don't pick their scabs, don't ruminate. I celebrate those with humility and a sense of humor. I am so grateful to those who truly listen, and genuinely care. I've managed to fall into almost all of the above bad traps, myself!

December 27, 2012

breaking the Goldwater rule

Please read Paul Steinberg's piece in the New York Times about our failure as a society to address untreated schizophrenia. As with other mental illnesses, we've been so busy avoiding the cruelties of the past that we are failing now to use the information we have: treatment works but we're not doing it.

Families need help, society needs help, but most urgent: patients need help that we are simply not giving.

December 24, 2012

December 23, 2012

Norwegian translation: help!

I have a family letter in Norwegian that I am trying so hard to decifer and have translated. I'm hoping one of my readers reads Norwegian or knows someone who does. The script is pretty archaic (letter is from WW1) and written to save space.

I'm doing this for a family member tracking down genealogy clues and it would means so much to me to get it translated!

December 22, 2012

Psst! Pass it on! Action Alert from EDC

Action Alert from the Eating Disorders Coalition:

We have until December 26 at 5 pm (EST)!

Support EDC’s efforts to strengthen the affordable care act!

The design of the Essential Health Benefits (EHB) is an important opportunity to address the health needs of more than 14 million Americans suffering from eating disorders. With the passage of the Affordable Care Act there was the inclusion of mental health as a specific benefit that must be covered. The EDC is working hard to make sure eating disorders are incorporated into the EHB. This is an opportunity to lessen the continued and widespread insurance discrimination experienced by people with eating disorders.

We need your voice!

The EDC asks you to support our extensive comments by sending in your comments as well.

Here is how:

1. go to:!submitComment;D=CMS-2012-0142-0001
2. Click "Comment Now" button

3. Enter your name and other information

4. Cut and paste below (limited to 2000 characters)
5. Click Submit

Comments: (Note: These are so short and concise due to the 2000 character limitation)

Please incorporate the following recommendations so that people with eating disorders will have better access to treatment.

1. Benefit substitutions should not be a vehicle to exclude or limit needed care for eating disorders.

The proposed rule allows plans substantial flexibility to substitute benefits within the EHB categories. This approach could undermine coverage for enrollees with eating disorders if a plan is able to use its substitution flexibility to exclude eating disorders treatment or eliminate medically necessary components of the continuum of care for these conditions. All States should have robust and detailed EHB packages that ensure full coverage of all medically necessary services across the continuum of care in each of the categories, including the mental health category.

2. Ensure that health insurance plans do not discriminate on the basis of sex in the implementation of the essential health benefits.

According to Section 1557, limits on covered services and condition-based exclusions that disproportionately affect women can be discriminatory. Plans that cover treatment for mental health conditions, but exclude it for eating disorders, including residential care, discriminates against women given that three times as many women as men suffer from these conditions. The Secretary must address this sex discrimination and ensure eating disorders treatment is included in the EHB package.

3. Make out-of-network more affordable

Requirements related to cost-sharing in the proposed rule may expose individuals to high out-of-pocket costs. Since there are not many providers with eating disorders expertise many individuals with eating disorders require access to medical providers and eating disorder specialists, who are not within the plan’s specified network. The Department should create a special rule to ensure out-of-network providers are a viable option for patients that are unable to get the care they need through in-network providers.

Eating Disorders Coalition

December 21, 2012

Congressional Briefing on eating disorders mortality

In the tumult of putting on the Alexandria F.E.A.S.T. conference, let's not forget an achievement of its own: the Congressional Briefing held at the Capitol the day before. The briefing, coordinated with the Eating Disorders Coalition and Senator Harkin's office, was standing room only and quite an experience for all of us.

The topic was mortality and eating disorders: a difficult but important focus. We had speakers to take on the statistics, the personal impact, intervention, and legislative action and we had a roomful of families and legislative staff and allied organizations to listen and to rally together.

Thanks to F.E.A.S.T.'s incoming Executive Director, Leah Dean, we also have the briefing on video and a transcript now up on the site. We were also featured in a piece in Congressional Quarterly! Links to these and other conference documents are going up on the site daily (see below).

In the weeks since the event I have been in follow-up meetings with a wide range of folks in the mental health field as well as families and allies. Parents went on to spend the afternoon learning about legislation and visiting their representatives with the EDC. I keep hearing from families who did that training and are now taking their actions to local legislators and getting involved in their states and communities. Our goal was to empower parents and it was truly successful. Watch out world!

There were several important moments during that hour, but for me the most moving was when the families in the room - and some had lost their dear loved ones to an eating disorder while others continue to work against that outcome - were invited to hold up pictures of their families. They did so with great emotion, showing the audience the mothers and fathers and brothers and sisters and grandparents and aunts and uncles and cousins and others - affected by this illness and putting faces to the heartbreaking statistic of "TEN PERCENT."

Watch the video and join F.E.A.S.T. in declaring the end of the unacceptable mortality rate for eating disorders: we can do better and we must.

 F.E.A.S.T. Family Guide "Puzzling Symptoms: Eating Disorders and the Brain" (Printable!), Alexandria Film Festival Winners & Parent's Choice Awards, 2012 Nottingham Conference Videos2012 Alexandria Conference Videos  "Ten Percent is Unacceptable" Video  "Ten Percent is Unacceptable" Transcript

December 20, 2012

Combating Compassion Fatigue in the New Year: Helping the Helpers

A terrific and timely blog post out of UNC:

Combating Compassion Fatigue in the New Year: Helping the Helpers

"how often do we as family, friends, and helping professionals take this advice ourselves?"

I love how ALL those around the patient are considered here; as it should be!

December 19, 2012

Support us, healthcare providers!

Let's say a parent learns that in order to help his son or daughter recover from being hijacked by an eating disorder the family must plan, serve, and support that patient through three meals and two snacks a day - plus emotional support afterward - without purging or exercise.

Let's say the parent believes it, commits to it, and has the courage to make it happen.

But the patient says, "no."

Who will support the parent? Almost no one.

  • Legally, most patients have the right to refuse treatment
  • Traditionally, patients are considered to be in charge of their eating and thoughts and the eating disorder is seen as having deep meaning and environmental causes - and food is considered merely a symptom
  • Most professionals (doctors, psychologists, social workers, dietitians, teachers, coaches) will not support the family in doing this and most will DIScourage it
  • Healthcare insurance and national health systems will rarely support it
  • Emergency medical services will not apply until the family has failed
  • Public opinion, which includes one's best friend and neighbors and sister-in-laws and co-workers, will not support the parent 
  • Very few of those who have chosen to specialize in eating disorder treatment will support it and many will have negative views of the idea
And yet, this action by parents is considered not only helpful but the "gold standard" when part of the Family-Based Maudsley approach and failure to do so is known to lessen chance of recovery from a potentially lethal and usually disabling mental illness.

What I am seeing around the world are parents who ARE ready, able, and willing but face insuperable obstacles not least of all the lack of credibility. Only a tiny number of parents are told about the option at all and those who seek it out rarely find skilled clinicians. Most clinicians who are prepared to support families through this are themselves undermined by conflicting messages by other professionals and public opinion. Insurance and health systems do not depend on effectiveness and in fact tend to privilege ineffective and emergency-only care.

Thanks to the focus and professionalism of a handful of researchers, we have solid evidence that FBT is a life-saving intervention for many -- probably for most patients. We have not gotten that knowledge off paper, however, and into practice except in small isolated islands besieged by other messages and undermining factors. That is the work that needs to be done NOW.

more favorite things

December 18, 2012

Asperger’s, Autism, and Mass Murder

I am, as many of my friends, avoiding too much news coverage and commentary about the Sandy Hook tragedy. Our reasons are more than the agony, more than respectful dignity for the victims, more more than just avoiding real-time sensationalism. We are bracing ourselves for the ignorant use of the term "mental illness" and the reactionary platitudes we know are coming.

I would like to hope that one response to this escalating phenomenon will be a complete re-thinking of our mental health "system" and access to compassionate, effective, on-demand mental health services. I would like to hope that the responses will be toward improvement and not further misunderstanding and stigma. But frankly: I don't. I think we will wallow in misery and indulge with shrill relish in the agony of others; blaming some and making heroes of others. I don't find incidents like this educate or motivate us -- they seem to entrench us all in rote responses.

I cringe at how everyone -- including me -- just wave whatever flag of societal ill we were already waving, just higher and with more frustration. The heart-breaking truth is that helplessness is an intolerable condition. We want to help and we cannot. 

Those of us who focus on mental health reform will continue, and will interpret events through that frame. Watching society talk about mental health without understanding or sympathy or a view to what we CAN do is excruciating but unavoidable.

Among the better essays of the week, I recommend this, by John Elder Robison:

Asperger’s, Autism, and Mass Murder

December 16, 2012

these are a few of my favorite things

As I continue to unpack and organize the truck-ful of boxes from the Alexandria conference a collage of pretty, meaningful items have collected in the middle of my desk. All have particular memories and meaning to me. All have a particular person or group I am sending thanks.

December 12, 2012

review copy

On 12/11/12 5:11 PM, "M*********, M***" <****@****> wrote:

Dear Laura: I'm reaching out to offer you a review copy of &*()_&^%'s new book Weight Loss for People Who Feel Too Much for possible sharing on Laura's Soap Box. I know straight book reviews are generally not your thing but I'd love to discuss ways to work together to feature @#$%^s book in some way as I'm sure your audience would really love it. &^%$#@s goal is to help people who are struggling with their weight finally let go of what is weighing them down, physically and emotionally.  Her hope is that by going on her four step, eight week plan people will finally discover the real reason they struggle with their weight and finally take it off for good. We'd be happy to offer copies for giveaway or the chance at a written Q&A with )&^%$# to you. Should you be interested in getting a copy of the book and discussing further promotions please send me your address via return email.

Thanks! M*******

Director of Marketing
********************** Press

Dear Ms M********,

You probably could not have found a less hospitable blog for any weight loss content. My daughter had anorexia nervosa, a mental illness triggered by weight loss. My message to parents is to fight AGAINST the message of weight loss as a solution for health, happiness, and well-being. The very idea of promoting a book that makes these promises would amuse me if it did not infuriate me more!

Please consider publishing books that follow the science, not the false and often dangerous promises of the dieting mentality.

Laura Collins

December 10, 2012

the power of glitter...

Those at the Alexandria conference will tell you that amidst the very serious elements of such an event, we also tried to have a lot of fun. One object I brought to share did NOT cause the fun I thought it would, however, because everyone was afraid of it!

It seems that a scale is a scale is a scale, and even with glitter and no numbers this one brought a few crooked smiles but nobody wanted to step on it. (mine is actually covered in magenta pink glitter, not plush, but you get the point)

It changes day to day because you recalibrate it all the time, but I'm usually "FINE" "PERFECT" or "LOVELY."

Put one of these in your bathroom, my friends, and see if it helps desensitize you to the idea of a scale. A sense of humor is the first sign of healing!

* Available from Voluptart, which has other delightful art and other items.

December 9, 2012

what we've known since the 1940s about eating disorders but still don't accept

A few things need to be said the day someone is diagnosed with an eating disorder:

This is not your fault.
You can fully recover.
Read about the Minnesota Semi-Starvation Study

But the problem with the Minnesota study has always been that you had to read an entire book, or a chapter to a book you didn't necessarily have, or a long dense chapter from a book from 1997 that is available online but is a copy of a long quote hosted on an iffy site.

So this morning I am thanking Dr. Emily Troscianko for her piece in Psychology Today that explains exactly and specifically what I think parents need to know in a moving and direct way. In the imaginary care package that I wish I could deliver to every family on the first day of diagnosis, this article is on top.

This study isn't all we need to know, but it is one piece we cannot do without.

December 7, 2012

Age, infirmity, and looking down my nose

So, it seems that I am now going to have to stop looking down my nose at people. And things. At least not over my reading glasses.

Just visited the optometrist to find out what magnification I should be using when I collect and festoon my life with drugstore reading glasses only to learn that not only do I need prescription ones I actually need distance lenses, and that my two eyes have entirely different needs. Who knew?

Adjusting to not having my many reading glasses as a part-time headband, part-time end of nose convenience will be difficult, I imagine. Not having headaches every day will be nice.

What was interesting, beyond my growing infirmities, was how lifestyle played such a role in what choices I have. It isn't just the numerical prescription but how I use my eyes that mattered. We talked about how much time I spend with what kind of screens. How do I sit (or recline) when reading. My driving habits.

Then of course the aesthetics and lifestyle issues of which frames to get. I hate shopping so I wasn't looking forward to that but the care that went into it was just as individualized, and even a bit fun. I knew I wanted something that suited my age (middle), and not too flashy but with a bit of personality. No logos (surprisingly difficult). No rhinestones. Can't keep catching my eyelashes when I blink.

Healthcare, and I realize how fortunate I am to have insurance and disposable income to make choices, these days in the US is an interesting mix of services rendered and policies fulfilled. Lots of forms, co-pays, reimbursements, extra charges -- but also a genuine choice of who to work with. My relationship with the doctor (who treats another family member, so I knew her) mattered. It was clinical, but also community.

I'm not glad I now need an optometrist*, but I'm grateful.

And if you've ever felt that I looked down my nose at you please forgive me and know it can't happen again!

*Dr. Shannon J. Colbourne, Warrenton, Virginia

Drop It and Eat

I was fortunate to get an advance look at the new book, Drop It and Eat: Drop the Diet, Manage Your Weight by my friends, Lori and Cate.

In my review I called it a Joy of Cooking for those experiencing disordered eating. Since I read it I found my grocery shopping has been enhanced and I've enjoyed some new dishes. I also really like the attitude of the book, which very nicely reflects the two authors and some of the struggles we all have with eating in a world that wants to make that so difficult even if you don't have disordered eating patterns.

The pictures in this book also reflect the pleasure and engagement of the authors.

Bon Appetit!!

December 5, 2012

Film Festival winners

Have you seen the Film Festival winners for the F.E.A.S.T. conference yet?

Modelling Effective Parenting For Eating Disorders>
C&M Productions 

Spotting the Tiger - Anorexia Nervosa  
Kartini Foundation


beat eating disorders : Family


Honorable mention:

Do Parents Cause Eating Disorders? The experts speak.
Laura Collins



Photo finish

Dear Internet,

As the F.E.A.S.T. conference travellers straggle home they may begin to post photos. Some of those photos may show me crying. Please rest assured the tears were of happiness and gratitude. Also: completely photoshopped.

It seems I am completely incapable of stuffing, deferring, or hiding my emotions. This has been a week of great joy and laughter which -- I hope -- is also reflected. And for all those who insisted on bringing me to tears, and then photographing it, let me quote the witch in the Wizard of Oz:

"I'll get you, my pretties!"