September 10, 2014

has F.E.A.S.T. ever done anything for you? A small way to pay it forward

You've heard of F.E.A.S.T. You have probably been helped by, or learned something from, or cheered for something F.E.A.S.T. has done. Every once in a while, F.E.A.S.T. needs a little favor. Here's one:

F.E.A.S.T. needs 10 or more new, positive (4- or 5- star) reviews in 2014 to be placed on the

GREAT NONPROFITS Top-Rated List.

CLICK ON THE ICON BELOW to submit your review! 

August 31, 2014

What is this? HAPPY where?

OK, I am about to make a bunch of parents cry by showing them some dancing. Are you ready, friends?

First, I want you to watch this fun bunch of co-workers. Try to figure out from the video what their industry is: insurance? coffee export? hair products?


Then I want you to enjoy this delightful group of their clients. They seem very, well, HAPPY with the services, whatever they are.
And then I will tell you that the first are the staff at an eating disorder center in Italy. And the second: the parents of the clients. You have to be the parent of an eating disorder patient to get how profound these videos are. You would have to have looked into the eyes of your ill child and wondered if they would live to appreciate how welcome this much JOY and letting loose can be. You would have to have been subjected to all the grim and dire and horrid documentaries and news stories which, rightly, let us know how very scary and dangerous eating disorders are -- to know how needed and life-giving it is to see families take a moment of joyous movement together.

Take that ED. Take that Disturbi del Comportamento Alimentare in any language!

And brava, Palazzo Francisci - and grazie!

Special thanks to my friend, Shan Guisinger, for first sharing these with me.

August 24, 2014

consider the source

One of my dear aunties once wisely reminded me to "consider the source."

When a sour person delivers a sour remark: consider the source. Attend an opera.... don't expect Country & Western.


And, when the Daily Mail publishes a piece on a dearly cherished project, expect a shocking title and photo. I did, and it did, and yet I am absolutely overjoyed.

This picture is awesome:

The other picture (online version only) is not. It's schtoopid, as Charlotte would say, and reflects the shallow pool of visual associations with anorexia nervosa.

My heart fell at the "born with" phrasing. It did. It is tragi-comedic in its misinterpretation of the science and may even perpetuate the very myths we hope to dispel with this research.

But here is the truth, my friends. The Daily Mail is doing more to bring in the necessary DNA samples to #AN25K, and donations, than any of us sitting around wishing and wanting. This article has more correct information about current eating disorder science than 95% of the digital ink spilled daily on the topic. It quotes the right people about the right topic and reaches countless people who wouldn't otherwise stumble onto Charlotte's Helix.

I can control what I type here. When I wrote for my local paper for a decade I had an editor, a copy-editor, an editorial policy, advertisers, and the context of the public's current thinking between me and the public. Those quoted don't get a say in the rest of the piece or the visuals. Headlines, in particular, are at the discretion of the editor. Photos come from banks of keyword-linked copyright-free folders. Science literacy, well, it is what it is. How much of the public is fully literate in the fine points of genetics, heritability, risk, and the actual meaning of "born with?"

For those needing an anthem today, this will be mine.



August 22, 2014

She is dancing toward recovery and for Charlotte's Helix!

You all know how I love to dance, and to share dancing with others. You can imagine my smile and delight at a new friend's idea to spread the word on Charlotte's Helix through dance. Join me in celebrating this young woman's project and the joyful energy she brings to it! Thank you, Anya, for this guest post:

Charlotte’s Helix Project, by Anya

I heard about ‘Charlotte’s Helix’ through a fellow campaigner who I was in contact with. I was overwhelmed by the positive and collective support that was available there. Discovering Charlotte Bevan’s foundation was a lifeline for me because it helped to not only to connect me to alot of online support but it also allowed me to realise how many other people out there had similar experiences or were struggling with the same problems and utilising similar strategies to do so.


Out of gratitude for Charlotte, along with a friend, I donated a dance. However odd it may seem to donate such a thing, it seemed fitting to me. Part of recovery is about reconnecting with positive forms of self-expression. I have always found that dance is an amazing way to celebrate and express what it is to be human.

This small act has led other people getting involved. For example, friends composed music for the dance ensemble, and fellow campaigners offered their DNA to the genetics study. I am now continuing the process of honouring Charlotte’s legacy by finding other dancers to join me in creating choreography that express their identity. An eating disorder does NOT have to define you and through this donation project I found a way of redefining myself. Consequently, I have learnt to delve into new and nurturing ways to support my wellbeing.

I invite anyone who is reading this to join the #DanceYourWayToRecovery# project and donate a dance today.  You don’t need to be the next Darcey Bussel; it is just about having fun and donating to a good cause.

Let the silliness begin!

August 18, 2014

Music and Marching!

It's the first day of school here in our county and boy is it quiet here at home!

This also means it is Marching Band season, and that reminds me of important MUSIC and MARCHING news:

For MARCHING, put the MAED MOM'S MARCH in Washington on your calendar: September 30. I'll be there to say a word or two on F.E.A.S.T., as will many parents I know all ready to take a stand, literally, on eating disorders. Everyone is welcome and everyone is needed. Let's make some noise!

And for MUSIC, there's a lovely Opera event for Charlotte's Helix on September 25. I won't be there except in spirit but many of Charlotte's friends and family and supporters of the Helix will be on hand. There will be gorgeous music by Royal Opera singers, a reading from a new book by a parent about coping with eating disorders, and a special guest, David Robb, who you may recognize as Dr. Clarkson from Downton Abbey (one of Charlotte's favorite shows).

There is a special therapeutic factor to being with others who understand your experience and are doing something together to make things better. Both of these events, within days of one another, are a way to BE THERE and be part of change.

Forward: march!


August 8, 2014

Difficult times, small favors

Our family is going through a difficult time: details are unimportant at this point.

I am mindful not to barrage people with appeals. Most of those I know, especially through this blog, are struggling with something or other and don't need to be asked one single thing: just supported.

I'm also not that good at being the receiver --

But today I am actively hoping that at least 20 of you will do me a specific favor, to help me fulfill a promise that I made a few weeks ago. There is no money involved, it is simple and it is anonymous. I offered to find 20 people from the eating disorder world to spend 60 seconds leaving a message of hope for others at the Project Hope Exchange site.

A few of my friends have done so already and felt really good about it: there was catharsis and healing just in the act of reaching out.

Now that I'm struggling with an elderly family member's adversity I find enormous comfort in the messages of others who have faced similar situations.

I committed to getting messages from the ED community because I know how needed and appreciated it is to hear warmth and feel understood by others with such a confusing and confounding condition. I want there to be a bank of family members, friends, sufferers, and their supporters leaving those "messages in a bottle" for others. YOU NEVER KNOW WHO YOU WILL HELP.

As I said, it's free, it's anonymous, and it will be your good deed for the day. Well, since many of you are generous and kind by nature it may be your 5th or 15th good deed of the day!

Please do this for me so that I can rest easy during this difficult time. All I ask is that you make the recording and then send me an email or leave a message here that you did it. I know you are out there and if you ever wanted to show me you care this is a great time!

My family doesn't need flowers or casseroles at the moment. But, the gift of this message, and supporting me through this difficult time, would be truly priceless to me. Helping others always makes me feel better.

I may not have time to respond immediately, but I am looking for your messages!

PROJECT HOPE EXCHANGE NEWS RELEASE: http://tinyurl.com/l6a8s9w
90-SEC INTRODUCTORY VIDEO: http://tinyurl.com/ny9jatn
PROJECT HOPE EXCHANGE WEBSITEhttp://projecthopeexchange.com/
PSYCHOLOGY TODAY FEATURE ON PHEhttp://tinyurl.com/le39qer
SAMPLE MESSAGES OF HOPE:
Jessica / Heart Attack: http://tinyurl.com/lj289ta
Laura / Eating Disorders: http://tinyurl.com/mt3so8x
Scott / Paralysis: http://tinyurl.com/kxlzefq

NPR/SACRAMENTO SEGMENT ON PHE:

July 22, 2014

Father wants answers on his daughter's death from anorexia nervosa

Averil Hart
help her dad find answers on her death
I met Nic Hart in London when I was there earlier this year for the EDIC conference. He spoke movingly to that audience of his desire to understand the treatment his daughter received, or failed to receive, before her death. Averill was 19 when she died in 2012. Her family wants answers about why. Mr. Hart and his family and supporters are asking for our help, the parent community that knows the agony and heartbreak of an eating disorder diagnosis, in spreading the word so that the Harts can get the answers they need from the health system charged with her care.

Please visit Averil's site, and subscribe to the blog. Re-tweet and subscribe to Nic's handle, @AverilsDad  Spread the word around the world to let the Harts know that they are not alone, that others care, and that at the very least there should be clear answers from those involved.

July 16, 2014

Charlotte makes it to the House of Commons

Typing this through soggy eyes, please enjoy Charlotte and Charlotte's Helix discussed in the House of Commons during Prime Minister's Questions today.

Way to go to MP Caroline Nokes and the Charlotte's Helix committee.

July 10, 2014

Celebrating Charlotte's Birthday

This week marks six months since Charlotte Bevan died. It doesn't seem that long, and it really isn't. A year ago I this week I was getting on a plane to go see her, and this was the week that we came up with the idea of Charlotte's Helix as a way to continue her legacy of work improving the world for those facing eating disorders. I came home with blue hair and a mission. I still have blue hair and many more have joined the mission!

This week is also the first birthday Charlotte will not have. In her spirit and on her behalf, I and others are committed to celebrating her birthday for her by supporting the Helix.

I'd like to tell Charlotte many things. I'd like to tell her that her dream came true and that the AN25K international project has been extended to the UK. She would want to know that thanks to the generosity of the volunteers, we are one quarter of our way to the initial goal of 1,000 samples. Charlotte would be glad to know that slowly but surely we are raising the necessary £100K to pay for the samples. Charlotte would join me in thanking the donors, the research participants, and the scientists who are making this happen.

We have collectively raised, in increments of a few pounds to $5000 at a time, about a quarter of what we need to reach our goal. Every dollar, pound, euro and yen are valuable to that total.

Last year, I gave away my birthday to Charlotte to show her my support and commitment. Many others joined me and she laughed and maybe even cried at the kind, joyful pledges. Let's celebrate Charlotte's birthday this year by doing what she hoped we would: come together over this project and have some fun doing it.

The wonderful Helix committee in the UK has just announced the "I choose to give" campaign on the Helix site. 

How can you help:
This project was important enough to Charlotte to make it her public legacy. It may change eating disorders forever. 

I miss Charlotte. This is something I can DO about it. How about you?

June 24, 2014

Mother of son with autism and eating disorder appeals for help

Posting by request of this mother:

 Allen Iglesia Aspergers for Severe Eating Disorder

   
Allen will attend the John Hopkins eating disorder program to live a normal healthy life and remove his feeding tube.

Allen had an emergency permanent G-tube inserted in his stomach on May 7 in an emergency surgery to help him sustain nutrients because he does not eat by mouth. He was diagnosed with Scurvy and Malnutrition because of his fear of foods He eats ONLY bread and drink water. Allen is attached to his tube for feeding 14 hours a day and cannot get off the feeding tube until he learns how to eat. Due to his Autism he believes that if he eats food he will die. His eating disorder which almost killed him (hospitalized for 3 weeks) can only be corrected at 2-3 eating disorder clinics in the united states. Insurance does not cover the majority of the costs which will cost the family over $250,000 in medical bills to help Allen live as much a normal life and not need to be attached to a feeding tube for 14 hours a day. Many people do not understand eating disorders especially when the child is diagnosed with Autism and Aspergers.  His fear of foods must be corrected to live a normal life and hopefully get Allen off the tube. In addition due to his aspergers and autism spectrum, this will be a task.

The goal is to get Allen off his tube in the next 4-5 years! No one wants to be attached to a machine 14 hours a day!

June 9, 2014

give hope, get hope

Give hope, get hope, with Project Hope Exchange:


For an interview with Jeff Bell, A2A Founder, please listen to this recent radio interview. And if you listen very carefully you may even hear another voice you recognize!


June 6, 2014

F.E.A.S.T. Applauds the Academy for Eating Disorders stand against BMI testing in schools

Parents, this is something we can all celebrate and get behind. Show F.E.A.S.T. and AED know this matters. Tweet, forward, print, and "like" the heck out of this, my friends!



F.E.A.S.T. Applauds the Academy for Eating Disorder's stand on BMI testing in schools

April 12, 2014

Thank you, Cynthia Bulik, and AED, and mom & dad

I just realized it has been TWO WEEKS since I was in New York for the Academy for Eating Disorders annual conference. Jeepers. I haven't but barely caught up on email not to mention laundry and bills.

But I want to take time now to thank some people. It's kinda "emotionable," as my kids put it. I can't do this without the risk of sounding braggy, because (squee!) first I have to share that I got an award.

A very nervous Laura with her
lovely and inspirational parents
and wonderful, wonderful hubby.
The AED Meehan/Hartley Award for Public Service and Advocacy, to be precise. I'm rather blown away by this, actually. The list of previous winners is impressive, and I don't take this for granted. When, ten years ago, I took on this advocacy work from my kitchen I had hoped to make some small change in how parents were viewed in the ED field. I accepted the award with full understanding of the shoulders on which I stood, and those I hoped would stand on mine.

I have enjoyed my work. I will treasure the accolades, and will in my dotage surely be boring my grandkids with the generous and funny and humbling speech by Dr. Cynthia Bulik introducing my award. I am deeply grateful to Cindy's confederates, especially Leah Dean, for the tributes. It's way embarrassing, but I am enjoying it. There have been times in the past ten years when knowing that I would be thanked for my rabble-rousing would have seemed like a dream you wake up from, not one we carried home on a brass plate.

Thank you, Cindy.
Thank you.
You see, getting this award from the AED wasn't uncontroversial. Not only are there many hard-working advocates and activists out there in our field but I have not been a particularly easy one to like. I'm a pain in the ass. Instead of joining the advocates in the field to laud and support the direction of advocacy I have been a voice questioning and criticizing "in the family." Not the ideal way to make friends or influence people. I don't think it is an exaggeration to say there are many folks who genuinely resent my voice and my work. So I get it that this was a statement of support for the messy, but necessary, work of challenging paradigms.

I had a speech prepared, but in the moment my eyes were clouded and my glasses unclear so I did not deliver what I'd planned, exactly, but offer it here.

"Today is a great day to be an advocate, when I am given an award and kind words and wear my best shoes.

It isn't always fun, however. A friend here at AED who I consider one of many mentors in this room told me some time back that it isn't about being right, it is about relationships. At the time I resented that, but it was true. You all know this best as this is a room full of people who do relationships for a living.

Today I want to acknowledge some of the relationships that bring me here.

First, my parents, in the front row, who taught me when I see something wrong not to complain, but to do something about it. To respect people even if you disagree with the views they hold.

And my husband, also here today, who is like many of the husbands and partners of advocates the one who made it possible for me to take the time to do this work. We don't appreciate the dads enough. They're less visible, but they are heroes of advocacy. This man is a hero, for letting me turn our dining room table into an international organization and dye my hair blue for DNA research without warning him.

I am deeply grateful to my fellow parent advocates on whose shoulders my work has stood and the momentum and credibility they offer advocates now. 

To Charlotte, in particular, for her example in life and in dying, to get on with it without whining.

Deep gratitude to the parents and community of FEAST, especially those volunteers who now take on the work and keep it going, like Leah Dean our Executive Director and our new Outreach Director, Lisa Laborde, and the board.

Thank you, so much, to my colleagues in the eating disorder professional world, and the advocates, for their support and their mentorship - and their own challenges to me that I learn from every day. Thank you for accepting and even welcoming parents into the advocacy, the field, and into the treatment of our loved ones.

And that is the point. My greatest gratitude goes to my dear daughter, whose illness moved me to do this work. It is the patients who all of us are here for, they are what we all share and care about. Our wonderful, courageous, daughter is my greatest hero."

April 11, 2014

Signposting F.E.A.S.T.

I've got interesting news, and updates, but still too swamped from three trips in a month to organize all my thoughts, but one promise in particular to fulfill. When I was in London last month I met the marvelous social media marvel, Dr. Pooky Knightsmith. She asked specifically if I would write a blog post about F.E.A.S.T. that she could share with her circle. With pleasure and pride, Pooky!

F.E.A.S.T. is the ONLY international eating disorders parent organization. Parent support and advocacy is what we do, and it is all we do. This is not to take away from patient advocacy and support, or pull away from the other wonderful advocacy going on out there but to put a laser-like focus on one important part. Parents are important when it comes to eating disorders. Not because we did something wrong to make our children ill, although for a long time that was the assumption, but because our knowledge and action are probably the most important factor in getting and staying in good treatment -- and following through on that long after treatment ends.

There are other special things about F.E.A.S.T., some of which even members may not know, as our members are caregivers with a lot on their minds!

One is that we are all volunteer: fellow parents and other supporters like leading clinicians and advocates and patient advocates. No one is paid, there is no office or big infrastructure to pay for. Our services and materials are not amateur, however, we hold very high standards for what information we share and the way experience is shared between peers.

Another thing you should know is that F.E.A.S.T. is independent: we neither solicit nor accept donations or sponsorships from treatment providers or companies that sell products to families: that's almost unique in the ED advocacy realm and it matters. In a field with many well-meaning and passionate but ungrounded treatments we do not want to be part of influencing parents in their treatment choices on anything but efficacy. We empower parents with information and evidence to enable them to make good choices on where and how their loved ones get care.

We are collaborative. F.E.A.S.T. is an active partner in initiatives and projects done by other organizations. We participate in conferences, co-write materials, and encourage our members to get involved regionally and nationally and internationally.

We operate according to principles, and under the guidance and oversight of our Board of Directors and our Advisory Panel. Our principles tell you what you need to know about our values, our focus, and our direction.

I'm very proud to have been part of the founding of F.E.A.S.T., and extremely proud to spread the word about our work!

April 9, 2014

Your “cleanse”, your colon and your bad decisions – KEEP THEM TO YOURSELF

Oh, thank you thank you thank you BingeBehavior.com ...


Your “cleanse”, your colon and your bad decisions – KEEP THEM TO YOURSELF

"By promoting a cleanse, you are in essence contributing to the struggle that a person who has an ED will face – and to the bullshit logic that the general public has fallen for, that starving yourself is in some way healthy.  It is not."

Speak it, sister! Speak it!

April 8, 2014

There's a new blog in town, and you're going to like it

F.E.A.S.T., the parent-focused organization I helped to found in 2008, has a new blog: Let's F.E.A.S.T.

Lisa LaBorde, the new Outreach Director for the organization, is the blogger and she's already posted twice about the recent ICED conference and her thoughts on the experience. Go check it out and make sure to subscribe.

While you're at it, don't forget F.E.A.S.T. has a news blog as well, to keep up on what the organization is doing. For example, if you subscribe to that blog you'd know that we just put out some new booklets you will want to print and share!




April 5, 2014

Survey: Body image in adult women

Posted by request:
We invite you to complete a brief online questionnaire investigating wellness and body image in adult women being conducted by researchers at Trinity University in collaboration with Emerge. You must be 18 years or older to participate. You can complete the questionnaire from any computer and it will take approximately 20-25 minutes of your time. In return, you will be entered into a lottery to win a $200 Amazon Gift card, which will be sent via email. Also, you will have made an important contribution to research on women’s health!
Please forward this email to any women (particularly those 25 years or older) you know who might be interested in taking part in this research.

March 23, 2014

Make that a "Vent" e

After listening to one of my fulminating rants about something, which I introduced thusly:

Oh, girlfriend, have you got a treat in store! That rant sometimes comes with frothing at the mouth, hair-rending, and quite pitiful moaning from a fetal position.
And ended on this:

But I’d rather we decided to devote our time to fighting the kicking of puppies, as I don’t find that any less relevant to EDs and, well, I like puppies.

Is that milk froth on my coffee, or rabid hydrophobia????

Rant over.

L.
And she responded:
We should open a coffee and social cause cafe called Froth ;)

Which I would totally frequent and with a little prompting might even want to start, but  only with you, dear Lizabeth! You have the spirit and the sense of humor that make me believe you'd be a grand rabble-rousing co-barrista!

Check out Lizabeth's work at BingeBehavior!

Opposable thumbs make us human, tweeting thumbs make us #maedvocates

A new Twitter Army has formed for ED advocacy. And a trail of newcomers are tiptoeing in...

A parent activist, after a trail of other successful campaigns, was able to get a sunglasses designer to change the obnoxious name of their product and then be featured in a media story about "How Companies are Listening (and Changing) Because of Your Tweets."

This activist, Jennifer Ouellette, has achieved some pretty extraordinary things from her keyboard, including:

  • Helped a patient get insurance coverage and into treatment despite formidable obstacles
  • Gained sincere apology from a clinician who publicly praised the benefits of mental illness
  • Gathered support to protest misguided ED "Awareness" media

Yet perhaps the greatest accomplishment has been her convincing a growing army of parents in the ED community to tiptoe into the waters of social media, especially Twitter, by showing them they are both needed and missed. She has noticed, as have I, that Twitter does not come easily to people our age who are not already "into" this sort of thing. So when Jennifer not only demonstrates the power of social media but patiently translates Twitter into English for this emerging army she is demonstrating a leadership that brings change.

It matters, too. Twitter is a way, especially with numbers of like-minded folks, to actually affect companies and organizations and policy. It's free, it's actually quite easy, and it works.

Now, what she's doing -- in her real name  -- isn't all unicorns and compliments. If you've had your coffee and are wearing asbestos underthings go ahead and venture into the comments section of the media story above. Note the savage and unthinking commentary. Now note the fact that so few people have commented to the contrary and this: note the "thumbs up" and "thumbs down" on each comment. We have thumbs, too, my friends.

I expect trolls and miscreants. That's the internet, and that is the dark underside of anonymous commentary. What I don't understand is why more families and advocates don't think they are needed to provide at least some ballast for calm good sense. No, we can't fight every battle and it may seem like "stooping" to the level of the mud-slingers. But silence is LOUD, and leaving fellow advocates out on a limb where they have so courageously and charmingly gone out FOR US, well, don't.

I've spent a decade speaking up. Most of the time I have felt isolated and frustrated because most of the response, while supportive and kind, was private and there was little joining in. I've gone out on many limbs because I felt it was important and hoped and waited for others to just hit the "like" button so the haters out there would know that I was not a lone nut.

It is a joy and an honor to get out on those limbs under Jennifer, to be part of the Twitter Army that she's building. It takes a critical mass to make a difference and I feel that building and my armor is on. Let's be that force "to be reckoned with" that is needed on many fronts.

You are needed. Click here for more info on Jennifer's work. Or, check out her tweets and join in!


March 20, 2014

Email fail

If you have emailed me in the past few days, and not received my usual quick acknowledgement, please know that I just discovered that one of my accounts has been down for over two days and I am only now receiving emails. I was sending them, and wondering why no one was answering...

Digging through them now. Apologies!

I feel so rude.

March 18, 2014

Ungrateful houseguests

I feel bad about my remarks yesterday about language and issues I noticed in the UK on my trip last week. Fine guest I am: biting the hand that fed me so well.

You know, the reasons I didn't look at it that way at the time is because:
  • Things in the US are arguably worse or at least equally concerning in different ways
  • Noticing and noting patterns is what writers do
  • Being an ED curmudgeon is what *I* do
  • I didn't think of myself as an outsider
Still, I feel uneasy and remorseful. I've pulled down the post, for the moment, while I re-think it.

POSTSCRIPT: leaving this up to make sense of the comments elsewhere, but I've put the post back up. Lisa, playing the part of Charlotte today, gave me a hiding but good for self-censorship. This blogging thing, my friends, is more complex than you'd think. Yes, I made a few edits to clarify.

Please return to your regularly scheduled activities.


March 17, 2014

EDIC 2014: What a difference four years make

Bliss
It was a good trip to London for Beat's Eating Disorders International Conference. 

Facebook profile photos and email addresses and Skype images became people you can sit next to and just smile with. A lot of that, actually, so delighted to be in one another’s presence. One dimensional relationships develop tangents and then shared jokes and new tenderness even on short "real" acquaintance.

My trip had me alongside F.E.A.S.T. families and friends formally -- in the EDIC conference sessions -- but also marvelously convened klatches of friends who couldn’t afford the fee or the time to attend sessions but met at nearby museums and coffee shops in a rolling three-day get-together I didn’t want to end.

I took city busses and cabs and the Tube, crossed bridges, ate Italian and Turkish and one night just “nibbles” that were so delightful I didn’t realize until I tucked into bed that I hadn’t really tucked in to a meal. My stay at the Russell Hotel was London charming: tiny room, palatial breakfast hall. I didn’t forget any chargers and used exactly as many pairs of shoes as I brought. For some reason I still, at my age, feel terribly adult when I negotiate all the transitions and packing and make it to the last leg without major snafu. Let’s not speak of the time I wandered away from my luggage… no one stole or blew it up.

The blue-haired ladies of EDIC
Recalled another London trip, in 2010 when I first met Charlotte and other dear friends here during EDIC. Four years marks real changes in the ED field and in the international community of those involved in EDs. On that first trip I represented a far more radical, marginal POV on eating disorders. F.E.A.S.T. was unknown to almost everyone I met and those that recognized the name more often than not did so with wide eyes more than admiration. I represented uncomfortably American and off-putting "activism" to some. The families I met were often bowed with despair and politely a-boil with anger.  

I see differences now. Far more active, informed and opinionated families. Sorry about that, England. More alliances with former and present adult patients – a really delightful aspect of the UK F.E.A.S.T. crowd. Less parent-blaming from the podium. More collaborative talk across disciplines and between families and clinicians. And, F.E.A.S.T. was often recognized as a resource to families in the UK and elsewhere, even thanked, as a collaborating partner in the parent, clinical, and advocacy worlds.

The shoes, the shoes!
I was really aware of subtle differences in language and orientation over here. The term “eating difficulties,” for example, has a gently-gently feel to it that puts me off but seems to work here. Being called an ostrich doesn’t cause a rhino reaction. I suspect the tendency to refer to people with eating disorders in the 3rd person is cultural, too.

The biggest difference is this: “anorexia” is often used here as a proxy for all eating disorders. I have always been jarred by it but more so lately and it jumps out at me here more than anywhere. But context is important and for those outside the UK’s NHS we need to remember the cruel reality that specialist eating disorders services are almost impossible to access if you are not at a dire low weight. You can have all the horrific psychological and behavioral symptoms of an eating disorder, you can binge and purge nearly unlimited amounts, and you can be quite underweight but you are only hospitalized or referred for specialist care for one late-stage symptom: extremely low weight.

This means the specialists in eating disorders really only see anorexia nervosa and only see those patients in extremis. The statistics, clinical experience, and resources are seeing one sliver of patients. The majority, the vast majority, of eating disorder sufferers are being seen on a non specialist, outpatient, local basis if at all.

It’s a self-perpetuating false view of eating disorders. It’s like defining infection only at the level of amputation-level gangrene. No one in the UK ED world likes this, accepts it, or doesn’t want to see it changed, but, when even dire ED cases have to struggle for resources it’s clear why the language has developed this way.

I live in a “system," the US, where we diagnose ourselves, seek out the kind of professional we believe best treats our condition, and get as much treatment as we can afford or our insurance will subsidize. It is often very bad care. It is often marketed to vulnerable families and then withdrawn when bank accounts are drained. We can get care for bulimia or BED as easily as we can anorexia, so our language and advocacy reflect that. Those who treat one ED also treat the others and has seen the range.

The British Museum, and we
didn't see the Vikings!
I realize I have offended many of my UK friends by asking them to change their use of “anorexia.” I recognize it is awkward to use the whole string of names, and to list all the symptoms. But I want you to think of the mum I met yesterday whose daughter, Kate, died of bulimia six years ago. This was the mother’s first ED event, the first time she felt strong enough to join in, and to pursue her hope of writing about her family’s experience in order to help others. This parent in the audience didn’t hear the word bulimia, or the symptoms of bulimia mentioned. The term “eating disorder” was meant to describe only restricting anorexia everywhere she went: the seriousness of extreme weight loss.  The term anorexia was used widely. How welcome did she feel? How safe?

True, nearly everything we can say about anorexia is also true for the rest of the ED spectrum. The parental demands, the professionals to consult, the issue of malnutrition, and the danger are all the same. But “Anorexia” is a specific sliver of the spectrum, not a term that can be fixed with an asterix or subtitle. Solution: let’s just say “eating disorders” for the spectrum and be specific on sub-diagnosis when talking about specific patients or treatments?

Helix team on duty!
Another theme I observed was the effect of how UK mental healthcare service is delivered by age group. CAHMS for children and adolescents, adult services over 18. The difficult transition to adulthood is familiar to parent caregivers in the US but quite limited: the difference for us is legal limitations on information and privacy, and sometimes in guardianship. In the NHS the difference is also in function: adult services deemphasize weight normalization, parental involvement, and even the goal of treatment. UK parents are terrified of that transition and rightly so. The reasons, unfortunately, are complex. Getting this fixed across the NHS would require both top-down and local initiative. People are trying, but it is a real problem.

Russell Park....
One side note to this is a shocking tolerance for patients not ever reaching healthy weights. When the standard for specialist care, for gravity, is a BMI of less than 17 (often lower) then we are actually talking about a system that not only fails the patients it enforces the illness’ dictates. Discharging patients before they have had a chance to gain normal brain function, and without a plan to reach it, is a plan WRITTEN by ED. An entire system that will not set the standard at full health is tragically wrong. What saddens me most is that this is even up for debate. I was deeply saddened this week, as I have been in the past, to hear clinician after clinician say that the standards are set low for the patient’s comfort and to keep their trust. I understand that this is the limits of the system, but should it be the limits of the clinical stance? What can we all do to support our UK friends to make the standard full and sustained brain nourishment?

Question: how’s that working for you? As a parent who talks to a lot of UK parents, it’s not. They want a health system that considers it a critical situation for a developing adolescent to be malnourished. Not just “starving.” Any malnourished child is in peril. And that includes bulimia, BED, OS-FED (EDNOS), and FED-NEC. Oops. Soap Box moment. (or Hyde Park moment, really)

I’m curious about how different cultures and healthcare systems interpret the existing science. For example, while the APA’s diagnostic category book, the DSM, is widely used in the US, and the categories are the standard in most research publication, but it is not widely used elsewhere clinically (um. the DSM manual costs $100+). That means we don’t all use the same terms and even the definition of the disorders may differ. The international standard, the ICD, has different dimensions and although it tracks mostly with DSM is emphatically not used in the US and not often in research – and some countries (learned this at EDIC) don’t use any. (France, call me?) So we are a tower of Babel when we really need some stone tablets.

My first croughnuts,
care of Miranda
One example of that is “obesity.” The APA, as described by Dr. Timothy Walsh at EDIC this week, looked at the science and concluded that high weight is not an eating disorder and furthermore not a mental illness to be included in the latest DSM. (I applaud this loudly, by the way. One example why was illustrated in a question from the audience asking why, if anorexia was a condition of low weight why wasn’t high weight the same thing. Walsh’s answer was that “obese” people typically do not exhibit pathological thoughts and behaviors, but people with other eating disorders do.

My answer is simpler: anorexia is not a weight condition, it is a mental illness at all weights. “Obesity” is a weight condition, not a mental illness.)

Selfie at the park
But “obesity” is still considered an eating disorder by many in the field, despite the APA’s stance. For those treating EDs in the US, or anyone using the DSM, this means no way to tick a mental illness box on their forms for reimbursement and no way to publish research on a mental health diagnosis that doesn’t exist. Good move.

My plenary presentation at EDIC went off okay, I think. People always say nice things, but I like to think I’ve gotten better at public speaking over the years and really did do F.E.A.S.T. proud, and the parent community proud, and that the four years since my last EDIC stage (with Fiona!) were good training.

As always, it’s in the hallways and dinners and lobbies where relationships are formed and nurtured, not to mention seatmates during presentations. I met many new people over the sandwich table and during coffee and after Q&A. My walk through London with Miranda was unforgettable (and involved croughnuts)! I had one meet up at a museum that turned out to be two separate museums – mine being the wrong one – giving me a free hour to sit in Russell Park and watch the London world go by. Another gathering was graced with gorgeous weather, a gaggle of dear friends, but far too short a time. I loved the opportunity to address Charlotte Bevan’s friends about the Helix, with backup by video from Cindy Bulik and a star turn by Susan Ringwood of Beat. Dinner out with S & G ended on the most hysterical interaction with the server not soon forgotten. And an al fresco shared bottle of wine at that most relaxed moment: after the speeches, back in flat shoes, but before going home to do laundry and catch up on email.
Miranda on Charlotte Street
I really, REALLY did not like the good-byes. Sue and Helen and Erica and Rachel and Fiona and Becci, thank you for your support and kindness on the Saturday, and beyond. Thank you to the Monsons for hosting a wonderful conversation with nibbles and the sweetest and most attentive dog. Big shout out to the KCL team for the professional and energetic Helix recruitment stall. Thank you to Beat for the invitation and F.E.A.S.T. for the support. Thank you to hubby for sparing me and carrying on (British sense, not US).


Charlotte, you were missed. You are such a part of the community.  Your voice is in our ear, and your attitude is there to keep us from anything maudlin or vapid. I thank you, too, for the bonds you made between us and how leaving us something to work on together has created new relationships. Still mad you’re gone, though, so don’t let it go to your head.

March 16, 2014

Not the same tears

Today: London Heathrow. Ridiculously early, as ever. Coffee cooling. Egg and rocket sandwich enjoyed, last of my chilled grapes. PA voices dimmed by my iPhone playlist. Craftily marshalling electricity levels and data plans.

I was sitting just here nine months ago, leaving London. I remember the unreadable novel I bought in that kiosk to read on the plane. I remember the weather, slate grey, and the gate change and the elegance of the woman sitting near me in the lounge. I remember, but more accurately feel in my chest, the hollow misery of flying away from my friend, Charlotte, who would suffer the misery and then death that she and we all knew was coming, soon.

I’ve seen death before. We die: there you are. Charlotte chose to live and die with daily purpose and connection. These past months devoted to doing my part to carry on some of that legacy on her behalf feels like much longer than months. I’m not the same woman at gate B32 as in July. These are not the same wet eyes and snuffles. And, I hope, not the same wary observers.

I leave London assured that Charlotte’s Helix is securely established with good minds and motivation to carry it forward. Charlotte’s family and friends, fellow advocates, scientists, and kind conference delegates now form a neat basket for what was, 9 months ago, something two women made up sitting outside a farm kitchen door.

I’m older and wiser. This experience has grounded me, humbled me, matured me. As I sat here and considered it I realized this response, of action and purpose, is what growing up does for you. It’s not about me and my loss or my role. It’s about thinking bigger, about acting instead of just reacting. I am perhaps finally an adult, complete with Big Girl Pants.

It’s courage, which Charlotte had and lent us, collectively. Thank you again, Charlotte. 

More about the trip later... with pics!

March 10, 2014

Off to see the Wizard, or, When Good Mothers Go Blue

I'm off to London tomorrow to give a little talk about brains at EDIC conference put on by Beat, and to connect with F.E.A.S.T. families, and to do a bit of Charlotte's Helix business.

And I'm bringing my rocking ruby red slippers, and my hair streak is glowing blue.

You can't say I'm not "bright."

What a blow for US - UK relations, I'm sure. Is this any way for middle-aged mothers to behave?

Wish me luck, and if you are in London this week come join us at EDIC. There are special Saturday rates for families. Fiona and I will be easy to spot: look for the otherwise reasonable ladies with blue hair!

March 4, 2014

Eating Disorder Awareness Week Season Wrap-Up

I was excited to see so many friends blogging during Eating Disorder Awareness week season (it differs depending on what advocacy organization claims the franchise in your country)

US: National Eating Disorder Awareness Week Feb 23-March 1 (NEDA)
Canada: Eating Disorder Awareness Week Feb 2-8 (NEDIC)
UK: Eating Disorder Awareness Week Feb 24-March 2 (Beat)
Australia: Body Image Awareness Week September 1-8 (Butterfly)

Quite a few organizations have just decided to call February: Eating Disorder Awareness Month!

Among my fave blog posts of the season:

Marcella's It's That Time of the Year Again post is a winner. So is Jenn's Bang My Head on the Desk post. I cheered for Bridget's great 10-point list of resources (and not just because it mentions F.E.A.S.T. and Charlotte's Helix). I've mentioned how great everything Carrie writes on the topic is already but will say it again. June Alexander has it not only right but forward thinking as she defines awareness. Bev brings it back to facts, where it should be, and evidence. And Cate casts her eye to 2015, which is admirably temperate and the best way to end the week.

My favorite video of the week was this one, about media and eating disorders, both for content and style:

My favorite link to something that isn't about eating disorders but could be is this: Whose Fault is Autism?

Why I love and hate Twitter. #NEDAW #EDAW2014 #exhausted

Two of my loved ones sent me this, spontaneously, within an hour last week.



Very funny.

But timely. My fingertips were numb from tweeting. Now that Eating Disorder Awareness week season is over, hundreds of tweets later, I'm recovering sensation in my hands and ready to reflect.

This was the EDAW of the tweet. If you were not on Twitter this week you missed some of the most interesting, most exasperating, and realest moments of eating disorder advocacy to date. The problem is, not that many of my friends and allies ARE on Twitter. Parents, in particular, are only lately getting involved.

And I hate Twitter. Sorry, I do. I hate it like every cliquey, cool kid, inside joke, jargony, all-in or completely out of it situation in life. I hate Tweetchats particularly.

And yet, last week I was actively involved with two important Tweetchats*, engaged in two successful and one unsuccessful twitter campaign, met several new allies, developed a number of relationships, discovered budding activists, had a few fights,  and generally got in a word about issues that matter to me with people I would otherwise never have interacted with without Twitter.

Hashtag #sigh #Internetisamixedblessing #makeitstop.

Twitter isn't just a way to insult celebrities or howl at a cyber moon. It truly is a way to be the first to hear research news, to know what your allies are doing and thinking, to maintain relationships with your allies, and of course to be a thumb in the eye to miscreants. Oh, but it is exhausting. I could, easily, expend all day just reading tweets and responding to them. I could make a full-time job of just Twitter advocacy.

Unfortunately, Twitter advocacy doesn't stand alone. It is the nexus of all else going on in the field and media and research. Tweets are links to people and pages and networks. Twitter is a hub of Facebook (right now where much of the rest of advocacy has migrated), of LinkedIn, of Google+, of Instagram, of forums and private emails and organizations and PEOPLE.

You can't do this stuff effectively if you only show up sporadically. It is bad form to retweet stale stuff. People who aren't consistently monitoring their feed, and doing the #FF and RTing in real time fall off the edge of the Twittersphere. You know that co-worker who is out of the office all the time, doesn't sign the birthday cards, never comes out for drinks, and then expects to know why so-and-so is crying and the movers have taken the desks?

This year has been particularly interesting, as viewed by Twitter, because the online activism revealed some of the differences between activists, and reflected the conflicts in a public way. More EDA curmudgeons expressed dismay at the mainstream. And, for a change, there was conversation about it rather than people needily tweeting into the ether about their own work and angst.

If you care about eating disorders awareness and advocacy and you weren't tuned in last week to Twitter, now's the time to get caught up and give some thought to 2015. You can't learn Twitter in a day, nor can you build your readers and relationships instantly.

Now, if we're lucky by 2016 we'll have moved on from Twitter and there will be better ways to communicate and stay in the know. But you know where we'll find out about those other ways? Twitter.

*NIMH Tweetchat on eating disorders
*AED Tweetchat on Social Media and Advocacy

PS Crikey! I got 188 192 new tweets on my feed in the time it took to write this. Good grief!