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.

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

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!