March 31, 2011

216 days, 15 hours, 50 minutes and 6 seconds

Today I start holding my breath and not exhale until November 5. No, today I am free to giddily plan and work on an exciting year that will crest on November 4. No: today is just another day that happens to be 216 days until a really, really big day.

The Map Ahead: F.E.A.S.T. Symposium in Old Town Alexandria, November 3-4 2011

Book now, or send regrets - put me out of my suspenseful misery: will you be there?

I need to know what these kids are saying.

I know, cute baby videos and catz and all that: not my bag. But this, you NEED this. And don't stop half way - it is exactly as long as it needs to be. And you NEED to find me a translator:




It must be something about a sock shortage. I have a strong sense that these kids have expressive, fun parents!

March 29, 2011

Clint Eastwood and me in a bathrobe

I know you think of the town of Warrenton as special just because it is F.E.A.S.T.'s address, but yesterday as I was sitting here working all day in my bathrobe I want you to know that Clint Eastwood Invaded Warrenton just a few blocks away, right in front of F.E.A.S.T.'s bank and post office box. Right near those courthouse steps, I'm sure everyone told Mr. Eastwood, my tap class performed just a few months ago. He didn't stop over for tea, nor did Dicaprio who was working a few miles away on another part of the film. But then again, I didn't get dressed to go stare at the proceedings, either - we're even.

March 28, 2011

we have to assume the treatment will work

Health Care Myth Busters: Is There a High Degree of Scientific Certainty in Modern Medicine?

"Yeah, yeah - but we have the best healthcare in the world. Be happy. Stop questioning your doctors - what do you know?"

Complaining, talking about the importance of data, using the word "evidence-based" gets people (me) into all sorts of trouble. My own doctors take a jaundiced view of my interest in the evidence behind their recommendations. My friends' eyes glaze over when I ask them if they have researched their own diagnosis or gone for a second opinion. But the problem isn't the tyranny of data, it's the willful ignoring of it. And here is an excellent explanation of why we do:

"...physicians frequently base their decisions on shortcuts, such as the actions of the average practitioner ("if everyone is doing it, the intervention must be appropriate"); the commonness of the disease ("if the disease is common, we have no choice but to use whatever treatment is available"); the seriousness of the outcome ("if the outcome without treatment is very bad, we have to assume the treatment will work"); the need to do something ("this intervention is all we have"); and the novelty or technical appeal of the intervention ("if the machine takes a pretty picture, it must have some use").

Every single of the bolded items above apply to eating disorder care. I wish everyone who is puzzled by my droning on about "evidence-based" will read that article to understand why.

Sorry, guys: Axe Body Spray doesn't work in real life!

First Sex Alters Body Image

Interesting article, but this last line is priceless:

"Axe body spray doesn’t work in real life like it does in commercials."

And how often do we hear this line: "Over time, however, women’s body image improved." Woo-hoo!

March 26, 2011

skip the Spanx

I wanted you to read this article, to share this sad, new behavior of athletes wearing slimming undergarments and causing neurological symptoms. Doctor To Teen Athletes: Skip Spanx

Then I read the last line.

Eff you. I don't "need" Spanx. No one needs Spanx. Clothes are to cover us, express ourselves, keep us warm - not to alter our shape. Our shapes don't need changing and I don't need to be uncomfortable in my clothing.

Am I to blame for my eating disorder?

I work hard to lift guilt and blaming from parents so they can be helpful to their kids. Yet the most heartbreaking guilt and blaming is of patients:

Am I to blame for my eating disorder?

March 22, 2011

Eating Disorder Iceberg

Always nice to have one's intuitions confirmed: that diagnosis is highly dependent on pre-conceived notions. I've always chafed at the marginalization of boys in eating disorder literature and discourse. I've always suspected that if society and doctors and especially parents knew what to look for that we'd be diagnosing AND TREATING many people who otherwise end up being seen as "picky" or "weird" or "very particular."

An Eating Disorder Iceberg, Revealed

There's more in this analysis of the research than just the gender gap, but I remember when a few years ago a pretty large study indicated that the numbers of male ED patients was more like 1 in 5 rather than the usual 1 in 10 - that it just disappeared from sight. I suspect people just couldn't fit that into their thinking so they just keep repeating the old stuff. The problem of constantly recycled old information is a big problem.

March 21, 2011

The mammogram poncho is stylin!

Things I loved about my morning mammogram at Fauquier Hospital:

Arrived on time
Great parking
Minimum paperwork
Seen on time
EVERYONE was genuinely sweet, especially Shannon
Geek-fest explanation of the new digital technology
The modesty poncho is fetching, don't you think?
No more discomfort than an overenthusiastic hug
The manicure set parting gift: adorable AND practical**
Done in 10 minutes
The rest of my day should go so well!

**I wonder what guys get for having a prostate exam?

March 20, 2011

Hush, hush.... voices carry

Let's say there was a field, a field treating a very serious illness. In this field, anyone is allowed - even encouraged - to be an expert. The range of opinions, treatments, and results in this field is wide: from life-saving interventions leading to lifelong remission to actively harmful treatment. Yet inside the field it is taboo to question one's colleagues, and real discussion and debate sends people into their little corners in resentment and hurt. Progress is glacially slow.

I'm a layperson: an outsider to this field. It may be troublesome to have me and others asking difficult questions and exposing internal dissent to the wider world, but I find it deeply troubling that patients and their families have to be the ones, largely, pressing for clarity. The Emperor is largely undressed, and those in the field know it, but seem resigned to it as well.

If you are treating OUR CHILDREN you have a responsibility to be at the cutting edge of knowledge and science and that what you believe and do be an open book. If you treat eating disorders and you are NOT speaking up in your field to improve it, then you are part of the problem. If you are treating eating disorders and the minutae of the science is over your head, get more training or find another specialty. If your field is in disarray and you don't want parents and patients to know it then you are part of a dysfunctional "family" that needs to get to work. For a field that so values open communication and not hiding from feelings and the skills of discussion: the conflict avoidance and low distress tolerance bodes ill.

To be more afraid of dissent than the dangers of a field where any opinion and any approach is equal and unassailable is sad indeed. It is infuriating to me that professional courtesy would override righteous indignation - or denial - of a field without moorings.

For dissent and serious questioning to come from OUTSIDE the field is a slow process. People inside the field need to start engaging in real discussion and maybe even in public:
Effective eating disorder treatment includes psychotherapy is a rare view into someone speaking out directly, and someone exposing the sad truth that the taboo is not just dissent but dissent in public.

Mutually respectful, awkward, and sometimes painful discussion is needed in this field. Now. Holding people accountable for their public statements and writings and speeches is part of that.

I don't like some of my reviews on Amazon and elsewhere, but I need to hear them and be accountable for any valid critique - and engage that critique with openness and humility.

March 18, 2011

F.E.A.S.T. conference November 3 & 4 in Alexandria, Virginia - be here!

It's done! F.E.A.S.T. has a date and a place and will begin registration soon for our first international event!

Historic Old Town Alexandria is gorgeous, fun, and easily accessible by air, rail, and car. It's a great place to walk, bike - and it seems everyone is walking a dog! It's a quick metro ride across the Potomac to Washington DC and we've negotiated reduced hotel rates that will extend before or after the conference for anyone who wants to make a holiday of it.

Here are your dates: November 3 & 4, 2011. The closest airport is Reagan National (DCA) and there's a free shuttle. Dulles airport is only 40 miles away, and SuperShuttles are available for $30 or so. Taking a train: Alexandria is just outside Washington.

I really want to see you there. We need to do this - come together to discuss what caregivers can DO to improve the treatment environment, influence policy and research and public opinion. We have a WONDERFUL keynote speaker, Dr. Thomas Insel from the NIMH, plus others for two days of speakers, panels, and discussion groups. We have AMAZING people coming from all over the world.

Registration starts soon - details to follow - I'm SO EXCITED!

March 16, 2011

Ready for my close up!

Me: "Wait, can I get a picture of this for my blog?"

Dentist: "Sure"

Cavity taken care of. Daily post done.

Next?

March 13, 2011

Split personalities

Well, my experiment in melding my "lives" has been fun, but I've reconsidered.

When I took off the cloak of anonymity and connected my "real" name with my pseudonym it felt like walking outside naked. I felt bold and glad I did it. But it's messy. Especially on Facebook and blogging. To be an effective social networking activist I need to natter endlessly about eating disorders, but my friends and family and neighbors don't want or need to hear all that.

So, I split myself into two Facebook people recently. I friended "myself" and invited my ED community to join me. So now "Laura Collins" has her own life again - but she's sharing her wardrobe with me this time and the good hair products.

When I get a moment, I'm going to split my blog, too. But now I get to choose new names and I'd love your help. Here's a list of proposed blog names for my personal blog (mostly non-ED things, lots of tap dancing and mulattoes and stonemasonry and a few snakes), and my Laura Collins blog. I'm also welcoming suggestions. Opinions, please!


Tap, slap, and roll
She taps
Have taps will travel
Taps At Dawn
Dawn Tapper
Keyboard Tapper
Carpal Tapping Syndrome
High heeled Taps
Travelling time step
Maxie Ford
Shim Sham Shimmie
Over the top riff step
Riffadiddle

Anorexigenic mothers, unite
Stop Unmaking Sense
Parenting Disorder
Not Otherwise Specified
Eating to distraction
Mom, Dad… What’s For Dinner?

March 11, 2011

No items to view. Helicopter mothers...

Since 2004, I have diligently - perhaps compulsively - tethered myself to the Around the Dinner Table forum. Well, that's the name now - it has had different names and addresses along the way. I set it up in 2004 after I was asked to leave the SomethingFishy forum for parents for saying all the same things I say now. In 2011, ATDT is not only a huge virtual community but it has created an actual community - now augmented by get-gethers and alliances and blog relationships and Twitterers and Facebook groups. It also led to the start of Maudsley Parents, and F.E.A.S.T., and a worldwide network of empowered families and clinicians with no relationship to the forum.

ATDT has been my baby all these years. It changed the course of my life. I made friends (and lost them) there. I wake up to it, carry it with me, talk about it all day. Because I receive all messages on the forum (7261 so far in 2011), and all registrations, in my email it means I get hundreds of emails a day and carry my Blackberry or laptop with me everywhere to stay on top of it. There is no little maintenance behind the scenes when moderating a busy forum - deleting spammers and trolls, smoothing interpersonal issues, enforcing rules, solving registration issues, keeping non-parents from posting, trying to identify and reach out locally in dangerous situations.

Historic moment: yesterday, after a Board of Director's meeting and vote, F.E.A.S.T. invited the most active member of the international moderator team, Mamame, to take the title and the role of "Lead Moderator." She's a trusted, energetic, multi-talented member of the "Mod Squad" and has single-handedly changed the back-office operations and smoothed the administration of the site and knows everything I know about the rules and boundaries of what we do. She's also fiercely protective of the forum and the parents there. I am confident and enthusiastic about her leadership, and know that this begins a new era for the forum where I no longer will make it "my job" to be aware of the forum every waking hour. The Mod Squad works well together and we manage it very collaboratively - it is time.

But I get to admit that it makes me weepy, too, right? I'm not going anywhere - still a moderator and still overseeing the forum but it feels like dropping a kid off at college, or like my dad must have when he drove the moving van to New York and left me in my Harlem apartment... I know it'll be fine. I know they'll call, but...

It's time to delegate more, and take a birds-eye view. I have been at eating disorder parent advocacy now for eight years and for this movement to move forward it be a group effort and have a life of its own - it already does. New advocates will need to step up and F.E.A.S.T. will reflect the vision of a changing parent community. With hard work and luck the ultimate goal is that F.E.A.S.T.'s principles be adopted by all eating disorder organizations who will make us obsolete.

It may be symbolic, but perhaps the biggest change in my waking hours is a decision I perhaps should have done before: I am routing the forum messages to a separate folder and not into my inbox. The silence is amazing. Instead of a futile battle to keep my inbox empty, I will choose when to check in to the forum. I will post less, and focus more on other tasks.

Gulp.

March 10, 2011

A new site giving parents permission, and ideas, for self-care

The eating disorder clinics at Duke and UNC have a new baby: a site addressing self-care for parents of eating disorder patients. Parents have trouble letting themselves do things to help themselves when in the middle of the ongoing crisis. This website does something important by emphasizing that we need to have our oxygen mask on first to help our kids. Caring for ourselves makes us better caregivers - and helps our kids.

Next, where's the site that gives us permission (and a bankroll) for a housekeeper and catered meals?

March 9, 2011

A travelogue of the history of anorexia

It is time for a longitudinal look at anorexia from the lens of our current knowledge, and June Alexander has done it. To create such a tour, she had to live it - and then reflect on it from a place of both recovery and new science.

I am cheering for June. Her book, which I finished last night, brought me through time and two continents. Through anorexia and bulimia as they went from unseen, to misunderstood, and then overcome. What is most amazing to me is June's ability to re-frame the past with such compassion - when her illness showed her none and often the world around her was unable to show her anything but confusion.

There are heroes here. June herself, first and foremost, but she suffers from neither hubris nor pedantry. She is a hero for being able to take decades of distress and refuse to punish others for their failings - or herself. She celebrates other heroes: her first husband and her four dear children shine through as real, tender, and steadfast. She gives credit to her clinicians, each adding something to her toolkit, each shedding needed light and patience along the way.

Yet the most heartbreakingly beautiful thing about June's story, as she guides us through it, is that while she tells the truth about how members of her family of origin let her down she also gives it context by the lesson she takes from it all. Instead of condemning families, avenging her loss of support and caring, her message is that parents need help to understand and act. She wishes her family had the opportunity of Family-Based Treatment and retains optimism that even families like hers could have been helped by the early and skilled intervention of the Maudsley approach. That is a compassion that staggers me. Where many would use that birds-eye view to choose villains, June chooses to prevent others suffering the same cruel losses.

I am deeply moved by this, more than anything. I have had the pleasure of spending time with June and appreciate her and her work so very much, but only by travelling with her from early childhood to the present - even brief moments where I was present - do I truly understand the depth of her compassion and optimism. And courage.

"Courage is the price that life exacts for granting peace." Amelia Earhart

June's website
Finally, June
Get Ahead Kids Magazine

March 8, 2011

Striking


From: Journalist@gmail.com
Sent: Tuesday, March 08, 2011 2:03 AM
To: info@FEAST-ED.org
Subject: Media request - eating disorders

Hello, 

My name’s "Journalist" and I’m a freelance journalist, writing for publications in "A Country." I’m looking for  women to interview about their experiences of eating disorders. Specifically I’m looking for women (18 and over) who have overcome a serious eating disorder and have striking before/after photos to include in the piece. Please be assured that the article will be written up sensitively, all interviewees will be paid for their time and it’s an opportunity to raise awareness of any charities or organisations, such as yours, that have helped them too.

Thanks so much, hope to hear from you soon, "Journalist."

Journalist,

A publication that publishes “striking” before/after photos of eating disorder patients is neither sensitive nor does it raise awareness: it perpetuates dangerous myths and exploits people with mental illness. Our organization has clear standards on this and does not assist this kind of journalism.

Your mistaken idea of what an eating disorder is, and how best to raise awareness, is common. I beg you to educate yourself on this, and reconsider your approach. We do indeed need coverage of this issue but not in this way.


Laura Collins
Executive Director
F.E.A.S.T.


Failure to treat IS our fault


The true tragedy of eating Disorders is not how crippling, life-destroying, draining to family and clinicians they are. The tragedy is that they are treatable but more often than not, we fail to even start.

Parents, this IS our responsibility. Seek treatment. Seek the best, evidence-based treatment and put everything else aside as you make this your priority.

March 6, 2011

Talk Doesn’t Pay

Talk Doesn’t Pay, So Psychiatry Turns to Drug Therapy is so tragic for all concerned. I can't imagine what it must be like to go into psychiatry to do real work with patients and end up extruding people through a pipe. This isn't good for patients, obviously, and not for the psychiatrists.

March 5, 2011

PTSD and caregiving

Having an ill child is scary. When the diagnosis is serious, the fear can be not only overwhelming but make us sick. It is no surprise to me that in reading PTSD shows up in parents of kids with cancer I read the exact symptoms I hear about and observe in parents caring for loved ones with eating disorders and remember experiencing myself: "intense fear, helplessness or horror; recurrent nightmares and flashbacks; irritability, anger outbursts, heightened startle response; and avoidance of events, people or places." Every single one. And more. Most interesting is the fact that these symptoms almost always seem to start just when things are getting better for the patient - which I have always interpreted to mean that parents instinctively do what they have to do and save their falling apart for when there is an opportunity to do so.

I also think parents of ED patients have a double problem in that society rarely understands or appreciates what a parent needs to do to be the best caregiver during ED recovery. We suffer in silence and often with stigma over our heads - and instead of being seen as having come through a crisis we're simply offered a place back at the table of normal. And we aren't. No parent who has seen a potentially deadly illness in their child is completely normal again: cancer, injury, mental illness, it doesn't matter. A grave threat averted isn't something you forget.

Interesting that the coping tips in that article are exactly what I might want to tell ED parents, too - but these are not the typical mood or content of advice to parents of ED patients. Usually, the advice is all about fixing yourself, backing off, all the things you should not have done and should not now be doing. Maybe because I do see eating disorders as a life-threatening, treatable, genuine illness I find the following to be right on the mark.

Coping tips for parents

-- Focus on today and not the future, and on what you can control versus what you cannot.
-- Recognize depression triggers: anniversaries of a diagnosis, your child's birthday or doctor appointments.
-- When seeking support, differentiate between those who give it and those who drain your energy.
-- Reach out to other parents who have a child with a similar diagnosis.
-- Get involved in an advocacy group for your child's disease.
-- Set up a website, with an organization such as Caringbridge.com, so that you can control information about your child's health.

March 3, 2011

( wait for it......




I know. Me too.

So, as a public service to help you with your day: )))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))). That should hold you for at least a day or so, right? You're welcome. ;)

March 1, 2011

NEDAW, extended

I know National Eating Disorders Awareness Week is over for the year, but the need for awareness and good science and family support is a yearlong necessity. If you are in DC tomorrow, please stop by a NEDAW-plus event at the West End Neighborhood Library where Kathleen MacDonald and I will be showing brief video presentations and having a conversation from both the carer and the recovered patient perspectives.

Also, enjoy a year-round message of encouragement to families, and empowerment of families by Maudsley Parents: National Eating Disorder Awareness Week 2011: A Message for Families