October 31, 2011

Send your questions - be a part of The Map Ahead

So, you can't come to The Map Ahead in Alexandria November 3&4, but you have questions that you'd ask the speakers and participants if you were there.

Now's your chance!

Take a look at the program and send your questions NOW to: symposium2011@feast-ed.org

Make sure to tell us WHO your question or comment is for, and WHEN on the program you would ask it. Tell us who you are, or at least where you are.

If you have general messages for the conference, send those, too - and we'll post them and may read them from the podium or put them on the screen.

Would you like to stop by and watch the conference live on your computer? Well, if you are a member of F.E.A.S.T. you got a passcode to access that - and if you are not, please join and follow the instructions on your screen. It's free! If you have questions as you are watching, you can tweet questions then as well.

October 28, 2011

what makes Charlotte tick, and ticked off

My deep gratitude for this guest blog post by Charlotte Bevan:

You asked me the other day about activism and what it meant to me and I have been musing. 
My first question is what is Georgie's life worth? What price? Answer. Priceless. And that goes for every patient. Their lives are priceless.

The first thing is that I fell into activism unwillingly. I did not want to be involved with eating disorders at all. They were for other people and I had assumed, rather naively that there would be help and support for me within our National Health Service if it happened to us. Then the bottom fell out of my world and I realised that I was alone in all this, despite expensive treatment and expensive advice. Nobody really got it, except the Forum. I fought the family, the doctors and the anorexia all at once. It was then that I realised that I HAD to do something to help.

So what do I do? The forum, obviously, which I try to get on to every day to offer my sometimes unwelcome advice. The C&M films which were born out of a fun email and have become an invaluable tool in spreading worldwide some basic ideas. They are not only my proudest achievement but, much more importantly, they have given me my soul mate in M. As of this morning, we are on nearly 10,000 upload views on You Tube and over 5,000 views on Xtranormal. We started in January. Finally, it has given me a circle of friends, all over the world, to chat and interact with. We all come from different places, classes, creeds and colours but we are all united in one purpose, one goal.

I write to the Prime Minister on a regular basis. Not that I get anywhere or that he replies. I get endless letters saying the same thing from the Department of Health - computer generated? I think so. That does not stop me nagging him on a regular basis. I interact with other ed professionals, disagree with them, massage their egos, listen to what they have to say and sometimes I want to smack their bottoms. They can be narrow minded and insular and cliquey and petulant, just like us. They are not gods. However, they DO have their hearts in the right place and tend to be good, kind caring people, just like me.

I have made no secret of Georgie's illness or our treatment module or my ongoing activism, which means that people come to me and I point them in the right direction. I don't win them all over (grrrrr) but slowly, steadily, I am becoming a port of call amongst friends and friends of friends, so at least they have the information to make the right decision. THAT is what it is all about. Getting information to people.

It is the how that is difficult. It is where we need more people to understand that sharing a blog, liking an article, Facebook and Twitter and all the tools we have for spreading information are vital. One friend of a friend might notice a shared link on Facebook and work their way back to you, or me, or any other Feast/ATDT member and begin to get the right treatment. I feel it is SO important that people realise this. Without disseminating the information, no one gets to read it. Even half an hour a week CAN make a difference.

BUT we also have to attack the stigma. There are so many parents who are happy to lurk under an assumed name on an anonymous forum but would hate for their family and friends to know that they are associated with an eating disorder. Why? Because anorexia is a diet gone wrong, bulimia is harmless and slightly revolting so shouldn't be talked about and as for Binge Eating Disorder, well, heck, they are just greedy - they could learn from the self-control of an anorexic, right? So how do we tackle that stigma? I don't know. I just rant about it, explain it, talk about it in general "autism" terms, try and embed it in people's subconcious and hope that they will pass it on. Am I winning? I don't know. But every time someone sees Georgie and says "Wow, she looks great - just a different person", every time one of my children gives a lecture at school, at home, at a party wherever and just one person "gets it", I know the fact that an is a serious illness, not a lifestyle choice and, most importantly, it is curable is beginning to creep through my particular strata of friends and acquaintances.

I want to do more but I have neither the time, nor the energy. However, if everyone does just a little bit, maybe the Chinese whispers campaign will work. Half an hour a week may just save someone's life. And their carer's sanity.

So why do we do what we do? I sometimes think that the sheer will of the forum, those who are visitors, those who are members that don't post and the vocal few who do, gets some parents through. I don't know anywhere else where there is so much hope, goodwill and kindness. That makes the difference. Then we pay it forward. Whether vocally on the forum or silently in our daily lives. We save people's lives every day. Not because we are doctors or nurses or paramedics. But because we care enough to read and learn and pass it on. And I, for one, am immensely proud of each and every member of our little community.

The way forward. What can we, as members of FEAST and the forum, do? Well, I think we have done a whole lot. We have taken a model, a good model, the L&L FBT model and used it as the basis for treament and then adapted it to suit the family. I am sure that neither "darling Danny" or Jim stick rigidly to the model every single time. I am sure they have moved on and adapted for various patients, like Walt Kaye and Julie O Toole and Janet and all the other warm, wonderful, kind leaders in the field. No one patient is the same. No one treatment is going to work for everyone. Therefore, I think it is important that we, as parents and carers, move away from trying to get the professionals to agree and instead move forward with our form of FBT - the Feast form or the ATDT form - call it what you will. The name doesn't matter for the moment, because we don't have one. Yet. We need to find one but we don't need to spend valuable time and energy on getting the professionals to agree on it. We need to show by example that it works. That we are the first port of call in an ed storm and, even if for whatever reason, FBT doesn't work for that particular family, there is no blame and no shame attached. We need to keep offering other strategies, from acupuncture to Trion Z therapy! We need to keep offering comfort and support for those in the trenches. We need to lead, so others will follow.

And we are. Slowly. Painfully slowly. But like treatment, this is a marathon not a sprint. The more members we gather, the more families we help, the more hope we offer, the louder our voice. It is time to change our strategy and stop trying to herd cats. It is time to lead by example and let the professionals come to us, rather than taking our begging bowl to them. We have some wonderful, amazing clever clinicians as advisers. They are inspirational. And there are more and more of them. Perhaps, it would be better if we were their gathering point, their flag in battle, rather than they being ours?

xx

October 24, 2011

two free scholarship registrations to the F.E.A.S.T. symposium: first come first served!

Due to two parents needing to cancel, there are two scholarship registrations newly available for the F.E.A.S.T. event near Washington DC. If you were unable to come for financial reasons, please contact us immediately to receive free registration - includes two days with sit-down breakfast, lunch, snacks, Learning Room, and all presentations.

Join families from around the world, clinicians, nonprofits, and researchers all coming together to discuss the past, present, and future for families facing eating disorders!

symposium2011@feast-ed.org

Powerful language

Words reflect our thinking, but they also help form and frame thinking as well.

I overheard something for the first time today: referring to the weight loss industry as the "weight-cycling" industry. I'm going to stop giving these financial interests - and they are enormous and cynical to the core - the right to name themselves. I will call the selling of weight loss products and services what they are: weight cycling schemes.

October 23, 2011

bail the boat or repair the crack first?

Refeeding is like bailing out a rowboat.

First of all, a boat taking on water isn't going anywhere. You have to get the water out, or you sink.

Does it matter how the water got in there? Well, yes, especially if the water is coming in as fast as you're bailing. If the reason you're filling with water is because of an unusual big wave then get into harbor and concentrate on bailing. If the reason is a big hole in the bottom you may need to pull the whole boat out of the water for a while. If it's a slow leak and you caught it early then bail as fast as you can and then get to work on patching.

My point is that you can't keep moving forward as if you're not taking on water. Refeeding is necessary, if insufficient. All the frantic rowing - or in this case, trying to go on with normal life and talking the issue to pieces - is just wearing you out and missing the point. Stop rowing. Bail the boat. Find the leak and patch it stronger even than the rest of the boat. Rest a bit. Then figure out which way you want to go, and start rowing - slowly at first.

Not every boat is going down for the same reason, but every eating disorder patient needs normalization of eating behaviors and nourishment and activity levels.

October 22, 2011

makes opening the mail interesting!

How often do you get a letter from the Governor of Virginia (a note to welcome The Map Ahead conference-goers) the same day you get another note like this?

Oh. my.

Just dare us, C, just dare us!

October 20, 2011

Snickerphobia

You can read the F.E.A.S.T. blog for the official news on the AAP trip, but I'll add some personal notes here.

One, to say that the Medical Education Task Force at F.E.A.S.T. did an outstanding job in preparing for the trip and the display. MB Krohel's organization and team were wonderful: including MEDA's Kristen Tyman and Task Force member Raye-Ann de Regnier on site.

As you might expect in these strange times, a Pediatrics conference was saturated with talk about obesity obesity obesity. One of the saddest things we saw was a artwork competition for kids on the topic of "Healthy Kids" which nearly all the children depicted as about food in some way, often depicting bad foods and good foods and no other aspect of health. Some also added in exercise. A scant few included other aspects of health: like studying and music and sleep. Only one that I saw mentioned safety (helmets), smoking, and drugs. One had a family meal: one. The overwhelming theme was that health equalled healthy food, period. Healthy food was fruit and vegetables, pretty much. Some of the imagery of obesity and junk food was genuinely disturbing.

So, in that atmousphere, it was small wonder that our banner and booklets titled "EATING DISORDERS" got a reaction. Most of the response was "thank you! important problem!" Though most of them seemed to be talking about obesity AS an eating disorder which, read my lips carefully, it is not. (Binge Eating Disorder is, but that is not a weight condition, and not all obese people have an eating disorder, and not all BED patients are obese. Just saying.)

Two other reactions gave us pause. One was the degree to which people walking by personalized the issue. I had at least four people ask me if I was giving the booklet to them because they looked like they had an eating disorder! At an event with exhibitors giving information on everything from chlamydia to leukemia why would the topic of eating disorders be seen as about the doctor walking by?

The other dynamic had to do with the fall-themed baskets of candy on our table. Some people drifted over with delight, but also apologies as they took little "fun" sized Snickers and Three Musketeer bars and other yummies. Others were openly shocked and questioned us on this "unhealthy" and "ironic" offering when here we were talking about eating disorders. One woman LITERALLY turned on her heel and reprimanded us as she walked away in disgust. (For which I was grateful as it embodied the more subtle but no less disdainful responses of other people) That DOCTORS treating children are so conflicted about and slightly phobic about small candies - even saying aloud that they were going to get "fat" from them - bodes ill for their calm guidance for families and children.

As MB Krohel wisely reflected, "We have a society full of guilt and fear around food." This makes it all the more important that we could be there - the only ones talking about the topic of eating disorders - to offer a calmer view.

October 18, 2011

the best eating disorder calendar I know

ELA has, hands down, the best ED calendar out there. I'm really impressed:

Conferences, Trainings, and Webinars

I met Dawn Hynes in person in Boston last week, a co-founder of ELA, and we had a really great talk about college and eating disorders - such an important topic for parents. I've got my eye on that site, which is growing rapidly, and have just bookmarked the calendar because it is comprehensive and includes related fields as well.

Great job, ELA!

infamous!

More later, but home from the American Academy for Pediatrics annual conference in Boston and unpacking clothes, receipts, mementoes, notes, and growing insights. GREAT trip for several reasons and for the impact it is having on my thinking on a larger scale.

Met so many people, strangers and friends, that my interpersonal nerves are numb. For egoistic reasons, one moment comes to mind this morning and made me sit down and write this unabashed humble brag:

An adolescent medicine specialist came up to me after a meeting where F.E.A.S.T. was introduced and told the woman I was talking with that my blog was famous and a "go to" source - and that people worried about getting on my bad side!

Aww. No way! I'm really very nice, I promise!

(but thank you - what writer doesn't want someone to say that at least once? still smiling.)

October 14, 2011

A dim view

Up at four to drive to airport this morning. Jeez. I'm sitting now at my gate, coffee in hand, surrounded by strangers tapping keyboards and thumbing smartphones and warming themselves by their Kindles...

I get a kick out of the way we space ourselves. The lounge area is now at an average of four seats between each party. The first person into the area picked a seat near a corner. Each of the new arrivals position ourselves at some internally calculated socially mandated distance. A couple arrives and performs a non-verbal dialogue of preferences; he wins, she goes for the coffee. We each place our things around us: nothing more than a handsbreath away, we set out the tools of travel like chefs prepping for a meal: laptop, phone, coffee, breakfast sandwich. Then, we chop and dice.

One person does something it seems that only one can do at a time: just watches. Her legs are crossed, her arm over the next seatback. She isn't multitasking, she's not avoiding eye-contact, she's not blogging. And, I hope, she can't read my screen and know I am watching her, too. I realize that we're losing not only the habit but the permission to simply gaze without purpose at the proceedings around us. It has perhaps become more polite to take up a screen and be busy. It's almost a moral position: I'm busy, I have purpose! That relaxed gazing is now reserved for smokers huddling outside buildings - though now they often keep one hand for puffing and one for thumbing, too.

A flight's passengers deplane and pass in front of us. They're fair game to people-watch. I work at home and live in a small town so watching random travellers is a novel promenade of styles. No one is talking: it's too early and they've been up even longer than I have, I assume. Plus, most are business travellers and alone - arriving for a long day in Washington DC and already dressed for the part.

I used to travel a great deal. I was a travel agent and had to know what I was selling. I managed high profile business travellers and celebrities. I once wrote tickets for the Jerry Lewis telethon. Question: is "Cher" a first name or a last? Is "Mr. T" to be "Mr. Mr. T?" Another question: is it privilege or infantile to cancel a flight on the Concorde because you can't get seats 2A and B?

Enough groggy rumination. Just thought I'd bring you along. I'll be in Boston in a few hours and have appointments and people to meet - people I've "known" but not met and, I hope, many new people - especially pediatricians - to introduce to the newer science and newer ways to help families save their kids. Very exciting, and an great honor to have F.E.A.S.T. doing this work.

October 13, 2011

Pain

So, regular readers here probably think that I say EVERYTHING that comes to my mind here on this blog.  But here's something I haven't talked about for various reasons - mostly because I didn't have any interesting observations to make.

I've been living in intermittent pain for a few years from a condition (never you mind about the specifics!) that required surgery to be resolved. I kept putting it off, thinking it wasn't that bad, it might get better, the risks of surgery, and the "I don't want to stop life for a while - I'm too busy."

But last month I did have the surgery and I did take time off to recover - with the love and caring of my incredible family and friends.

The pain is gone. Like, really gone. And it changes things. It's subtle at times, as it is an absence of pain and not something actively happening, but it's really wonderful and humbling. Here's things I've learned in the past several weeks:

Pain, even low-level, is tiring. It colors things. Being intermittent, it was like a little thief that would steal in and out and make courage feel stupid and being kind to myself feel weak. It felt depressing, as in it depressed my mood, deflated happiness or satisfaction. It loomed. It made me feel fragile, breakable, with hidden fissures.

I worried that the surgery wouldn't work. Only one surgeon said that, in a disparaging tone, after I mentioned I was researching all my options, but it stayed with me even through the assurances by others. It wore a hole in my resolve and decision-making. I let that one surgeon's attitude undermine me. My first thought on the first day that the pain wasn't there was not "yay." It was less attractive, it was "SEE!"

I feel taller, younger, smarter, stronger - though the surgery didn't change any of those. It's the lack of pain.

Not all pain was from the same source. Turns out that there are other creaks and pulls that had nothing to do with what seemed in my mind to be the central and growing source of all evil. Nothing big at all, nothing even distracting, but I realize now I'd come to look at all bodily sensations as part of the same pathology and now I'm getting to know myself more distinctly.

Surgery is fine, but the rest of it sucked. The prep, the fasting, the drugs, the drugs, the drugs, and the sitting around and being afraid to cough or laugh. I'm not whining, though - I was so fortunate to have pretty darned non-invasive "procedure." I also have excellent health insurance, choice of surgeons and hospitals, and the time and education to research my options and I take none of that for granted.

My family is absolutely wonderful. My friends are wonderful. The surgeon was wonderful. The nurse who touched my hand when I woke up was wonderful. Everyone was wonderful. The chocolate bar my husband squirreled to my bedside... divine. And no, I'm not on the happy drugs any more. I am just so grateful to so many. Not that getting set on my back like a turtle is something I want to make a habit of, but it sure made me appreciate so many things.

Oh, and 24 hour Turner Classic Movies is the best medicine ever.

October 12, 2011

Take heart in the theory of mind

Parents are perplexed, confounded, and misled by the odd but temporary symptoms of eating disorders - if we take our loved one's words and actions as their genuine and lasting self we can make horrible mistakes in supporting their recovery. It is SO important that we try to understand what is going on and often we have to do the thinking for our kids until they can.

The growing understanding of "theory of mind" can really help. This blog post by Herrin and Matsumoto is one of the best explanations I've ever seen of how this applies, and what it means to parents and caregivers.

Carrie Arnold draws on that post as well, with a patient perspective that is a must-read!

October 11, 2011

15,000 pediatricians: how much impact?

I'm off to Boston later this week for something completely different. For years I've been attending events and conferences focused on eating disorders where I've pressed the case for parent education and empowerment as a way to help patients recover. While these experiences have been educational for me and I like to think that I've had some little impact on the field at large that way, it is time to stop preaching to the choir and try to get information to those with far more influence on patients and their families: the doctor whose action or inaction early in the disorder may make the difference between life and death. F.E.A.S.T. is an exhibitor at the Academy for Pediatrics annual conference. This is exciting!

Our family was typical: when we first saw signs of our daughter's anorexic thoughts and behaviors we got her down to her pediatrician. Also typical, the doctor did not recognize it, did not give us any information about it, and only after the 2-3rd desperate visit on our part did they suggest a referral to a specialist. The specialist they suggested knew little about eating disorders, too. My husband and I went from alarmed to terrified as we realized within a few weeks that our brief research meant we knew more about this life-threatening illness than they did.

Here's what could, and should have happened. Years before the anorexia was clearly in place, our pediatrician could have pulled us aside to point out that "concerns about weight" had come up two years in a row in a child whose weight was normal and following a growth curve from infancy. That was a possible marker for later problems with an eating disorder, and could have put us as parents on alert - and possibly led us to implement calm family meals three times a day instead of falling into the "I don't want to eat breakfast" "I ate a big lunch" "I've got practice at five" trap that allowed and then hid the symptoms when they appeared. We could have seen those concerns as a symptom, not something to argue with her about.

When we brought our daughter to the pediatrician in alarm over the growing delusional thoughts around food and body size - where eating a single apple caused weight concerns - our pediatrician could, and should, have immediately suspected mental illness and pointed out that her weight had fallen off her weight history curve and although she hadn't lost weight she was no longer growing.

When we came back a week later reporting growing concerns, our pediatrician could have pulled us aside and explained that what we were seeing was most likely the early symptoms of anorexia, that this is a treatable brain disorder and that we needed to act with urgency and purpose, and that we must without delay seek out evidence-based treatment from eating disorder specialists - regardless of distance.

The pediatrician could, and should, have offered to provide medical monitoring and to back us up in our job of restoring her health but that they would defer to us and the specialist team on specific recommendations.

They could have stopped weighing our daughter in a busy hallway, stop looking like THEY were going to cry, stop treating her father and I as if we were doomed, stopped trying to explain the mechanics of starvation to our daughter in an attempt to talk her out of it, and stop saying "Don't worry, you're not dangerously underweight" as a reassurance that only fed the anosognosia and undermined our appropriate alarm.

So, of the 15,000 pediatricians at the AAP conference this week, how many can I personally nudge toward more of what families like ours need? I don't know. Never done this before. I know that every time I get to talk about eating disorders with non-specialists I find them curious and receptive and they ask good questions - they don't have that many pre-conceived notions and those notions are not as deeply set as those already in the eating disorders specialty. Wish us luck!

October 9, 2011

Literacy in an age of extremes

I note a new bitter nihilism out there souring discourse about mental health. It has two forms:
  1. Data! Only data! Look at nothing else!
  2. Nothing important can be truly known through research, so don't show me any.
These positions only serve to support one another, I'm afraid to say. The only way to really use research and design research and understand research is something far more difficult than many are able to manage: scientific literacy.

Dr. Thomas Insel, in his essay "Autism Spring" speaks with authority and reasoned optimism in saying "The answers — and there will be answers — will no doubt merge genetic risk and environmental exposure to help us reach the far side of the complexity of ASD."

I tire of the seemingly opposite but actually co-supporting nihilism of scientific debate over eating disorders. It would seem to be opposite sides of the spectrum to say "Nothing is known without research" and "research can't tell us anything real" but I find both positions lazy and simplistic.

Those who would dismiss everything not already in the AHRQ and those who don't know or care about such documents are in reality conjoined and co-morbid. They both use their positions for fig leaves over a lack of understanding or caring about the big picture. While people take positions that exclude the "other" extreme the discourse just gets dumber and less useful. These are not really positions on the topic: they are plays for power or defenses against small intellect or - most often - excuses for not wanting to do the hard work of integrating data and practice.

October 8, 2011

Stop believing that!

I correspond with a number of people who do not share my beliefs. These exchanges are difficult not least because disagreeing equals not trusting the other person's judgment - and people don't like not being trusted.

I'm sorry, but the eating disorder field really can't expect blind trust and collegiality when it includes so many mutually exclusive ideas. These disagreements are not just matters of opinion 'agree to disagree' 'don't be so black and white' kinds of issues.

As these debates get hotter, and they should, people ask "HOW can you possibly believe that?"

Surely, if there are truths to be known, we would agree on the facts?

Not really. Facts don't seem to matter. The more I see of all this I despair at the meaninglessness of facts. My facts are dismissed, just as I don't accept the facts of others. I "know" I'm right and know all the arguments - I even know THEIR arguments. It doesn't matter.

Here are some reasons why. They don't help, but they do explain.

October 7, 2011

Definition of the don't

Usually I focus on the actions, not the failure to act. But I've got a collection of Do Nots to share.

"He's trying" is not our time to sit back and hope.

"It would kill her to miss track this season" could be a fatal mistake.

Do not try the easiest thing first, do not listen to those who say "don't make it into a big deal." Run, speedily, from anyone who says "it's very common, it's a phase." Don't say to yourself "let's see how she does with this therapist that she likes." Don't say "we'll get a second opinion if this doesn't work out." "Don't think "he's not that sick, he doesn't even have the full diagnosis yet." Don't settle for "just go home and feed her."  Or, "I'm sure we can get her to open us to us, leave it to us." Don't listen to your spouse who thinks you're making too big a deal out of it. Don't listen to your sister-in-law who had an eating disorder in the 80s. Don't read one book and think you're done. Don't consult one "expert" and settle in.

And don't listen to me, either. Do trust your bravest parental instincts.

Why are you so angry, Laura?

Yes, I'm angry. I try to keep from seething and spitting, but sure I'm angry. Does that offend you?

You'd be angry, too, if you saw things as I do and saw so many families in needless suffering and confusion. You'd be pissed as hell if you knew that no matter how much good information a parent gets they are comparing it to all sorts of equally authoritative nonsense they're hearing. You'd want to get a sandwich board covered with angry exclamation points if you knew how hard it is to see your beloved child imploding and have no idea what to do.

There are REASONS for anger. Anger is alarm, urgency, frustration. It isn't an inappropriate scene at a nice party - yes, I get angry. Let's talk about it rather than assuming my emotion is the problem.

October 6, 2011

Why words matter, and whose job it is to clear it up

I've operated under the assumption until recently that the professional ED field needs to get its act together. I've pleaded and moaned about the need for professional standards and common terms and for the end of angel-on-a-pinhead internecine struggles that serve individual practices but not the public. For some reason I kept looking to them, pressured them, felt disappointed at them...

Just this week it finally really dawned on me that this is not only not working it probably CAN'T work and maybe it doesn't need to. Maybe instead of mobilizing the parent community to pressure the professional community - trying to herd all these cats into a corner - the thing to do is mobilize the parent community stop asking and start just doing it.

Maybe WE need to define the terms and use them properly and start expecting others to follow!

So while I've moaned for years about the sloppy use of the term Maudsley, for example, and the damage that sloppiness has wrought, maybe it is time for us to make sure WE use the terms consistently. I've ranted endlessly on this in my blog and on the ATDT forum and on stages - but I've always thought of parents as victims at the mercy of poor usage and that we needed the professional field to fix it for our benefit.

Guess what? They aren't going to. There is no "they" anyway - the "field" of eating disorders isn't a monolith or an organized body. There is no authority or standards or even a way to define who is or isn't part of the field. There is no field!

But there is one group that has both interest in and a clear definition: parents and caregivers. We don't need a league or a guild or even a F.E.A.S.T. WE care about whether a term means something, or it is being used or sold safely. We have a life-changing set of decisions to make around our loved one's care and WE CARE.

Want a view to the kind of thoughtful discussion and importance of this? Visit the Table's recent discussion. Love to hear from some of our non-parent readers on this topic.

Or cruise my past rantings:

The two Maudsleys - mutually exclusive or complementary?
Modified Maudsley - what's up with that?

"Am in still in the frame?"

This short film says as much about the town I grew up in as anything, but also a brilliant exploration of mental health and society. It's really moving.



Bill; The Man Behind the Legend from Alex Echeverri on Vimeo.

October 5, 2011

Shopping is a trip

So, I went to a nice department store this weekend to buy dresses and fabulous shoes to wear at our November event. For once I am not going to pack at the last minute with no idea what to wear and regretting I didn't think ahead!

I told the nice saleslady that I was a size X. Then, after an hour or two of giggling and a whole parade of lovely frocks approved and disapproved by my mother and daughter, I walked out with three dresses I loved.

The dress sizes?

X-2
X-4
X+2

Completely lacking in logic.

I'm glad to report that my fabulous shoes are all the same size!

Addiction treatment

Why can't we have this level of accreditation with eating disorders? While I'm at it, why can't we take this ongoing treatment approach?

Rethinking Addiction’s Roots, and Its Treatment



Bryce Vickmark for The New York Times


Dr. Christine Pace helps Derek Anderson manage his heroin addiction at Boston University Medical Center. With the help of medication, Mr. Anderson has been clean for six years.

I didn't know I HAD a 'hate circuit'

I remember when I was very young hearing that depression was anger turned inward. It was popular psychobabble at that time, but made sense. I suffered from serious depression as an adolescent and naturally I took this personally - and what I heard was that my depression was my fault and that my job was to go get angry at someone else and I'd feel better.

Later, I realized I WAS JUST DEPRESSED and it sucked. At the time, when it lifted I felt like the sun had moved closer to the earth and that I had made that happen, which is the good side of thinking depression is a choice.

But now I see that the self-loathing was a distinct symptom - not choice or cause - and that I see this in many people I know with depressive symptoms. There is this genius of making all events and interactions into judgments of our own worth. Even good events become reasons for self-flagellation: "Here I am winning this award and I'm not appreciating it properly. I suck."

So, while this article is talking about preliminary work and, I'm glad to see, has as much rebuttal as conclusion, it brings up important concepts:

Pass it on: Depressed patients may have problems with the function of a brain circuit thought to be involved in feelings of hate.

October 4, 2011

Experts

While I love seeing people I know in the newspapers and am glad to see my friends quoted I frown to see that these friends are being taken out of context and messages that damage families* are free to roam the earth.

Sometimes the rebuttals to these poorly conceived messages just go on to spread another failed idea**.

I happen to know that the people quoted in this story believe media is of marginal importance and that the illness can't be reduced to that narrow story line. But, of course, in speaking about a complex issue they of course will cover more ground than ends up being published.

*that media messages are causing childhood eating disorders.
**that childhood EDs are not about the media but in older patients they are.

October 3, 2011

Plastic surgeons unemployment crisis

Nose Job Patients May Have Mental Illness

This is staggering. Why, if this is true, is plastic surgery not being closed down as a profession? One third? One third?

Why is this acceptable that people with a serious and debilitating - but treatable - mental illness are being "treated" by plastic surgeons instead of getting proper care?

"The findings are based on a study of 266 patients evaluated by plastic surgeons in Belgium over a 16-month period. The patients made appointments to discuss a rhinoplasty procedure and were given a questionnaire to assess their symptoms of body dysmorphic disorder. Among those seeking the procedure for medical reasons — to correct a breathing problem, for example — only 2 percent of patients exhibited symptoms of the disorder. But among patients seeking to change their noses for cosmetic reasons, 43 percent showed signs of the disorder, expressing an unreasonable preoccupation and distress about their bodies despite having noses that were relatively normal. Over all, 33 percent of patients in the study showed symptoms of the disorder."

But it would kill her!

"She says going to college this fall is the only thing she has to look forward to in life"
"He would be crushed if he couldn't play soccer"
"Going on this mission trip has been planned for a year"

"It would kill her to miss this"

Parents, any time you are afraid to the do the right thing because you think it might crush their spirit, make things worse, cause more resistance, be too big a fuss, or dissappoint them so much they might lose their will to live... remember that what "will kill" is the illness.

Giving in to ED for ANY reason is what "will kill."

You can be part of the solution for your kid, or part of the problem - if you're saying the things above you may just be part of the problem.

October 2, 2011

My brother's keeper

What is our responsibility to others? Other parents, I mean. Fellow parents facing an eating disorder.

In my advocacy I've focused on empowering parents with good information, believing that with the opportunity to know about the options, and that there are a variety of ways to respond to the illness, that parents get the chance to do a better job. I have developed a line there where I stop: I don't expect parents to use that information the way I do, or act the way I think they should. I don't take responsibility for whether they understand or use the information.Not only do I not believe it is my place I really think I risk disempowering the vulnerable parent from owning their situation and acting with the necessary confidence.

At times I do feel more zealous - especially when I see a dangerous situation. At these moments I feel irresponsible saying less, quieter, and without urgency. I see wrongs I want to see righted, I see risks and possibilities where the other parent may not and feel it my responsibility to speak up. So, where's the line? When is it over-reaching, meddling, even harmful? When does a fastidiousness about boundaries risk harm?

I won't pretend this is always simple or that I'm always successful. I've had infamous situations where I was so passionate that people felt pressured just by my stridency. I've had people disappear feeling judged. Others I feel I failed because I didn't do enough.

I know others who similarly struggle. I've seen people go take personal action to help a fellow parent and probably saved a life. I've also seen people get burned and burned out by putting themselves out for another parent and been unsuccessful. It is REALLY hard to watch another family struggle when we "know" another way - a way we believe is better.

I'd be interested to know how others find their peace with this problem?

October 1, 2011

Like being in the mafia?

Blogging and living in an active social network creates an atmosphere of constant emergency and reaction. Real life mediates that by leaving too little time to respond to everything. Yet, my delay in writing about Jess Weiner's Glamour article controversy was more deliberate. I knew the blogosphere would glow for a while and Facebook would trade updates and "likes" for a while until thoughts settled. Some TERRIFIC writing has gone on about this issue.

In short, the drama here is that Weiner is a longtime activist  - she says "actionist" - for body acceptance and if you've seen her entertain a crowd you know that she is enormously engaging and delightful. She's been very successful at getting the word, and herself, out to a mainstream audience with messages that really weren't making the big time. For that I admire her. But being a skilled humorist and speaker doesn't make her a skilled analyst of the issues or, seemingly, someone with a deep grasp of the issues. My greatest shock has been that Weiner actually did not, and still does not appear to, understand the concept of Health At Any Size. Her body acceptance actively omitted the "health" part.

In her essay for Glamour, "Loving My Body Almost Killed Me", Weiner describes how "loving my body" led her to avoid medical care, fail to eat or be active in a healthful way, and led her to see any attention to her health as a betrayal of her self-love.

What's shocking here isn't the idea - I hear that mistaken and heartbreaking idea all the time - it is that Weiner of all people is making it. She insists on saying that it is her weight loss that is saving her life and that weight was her health problem.

I don't know what is worse: that a well-known body image activist was spreading poor information before or that she's compounding it now by becoming converted to another set of myths.

Weiner is now taking care of her health. She's active, she's learning to eat what her body tells her and as much as her body needs. News flash: these ARE the principles of body acceptance - as long as you are not confusing it with a pursuit of weight loss for its own sake.

I won't pretend that my own friends and family understand HAES. I have plenty of people in my life who continue to cling to the idea that the reason to be active and to nourish themselves in a balanced way is simply a pursuit of a slimmer body. Health is not the pursuit of a weight, and weight is not a measure of health. It is, admittedly, neither an easy or a popular set of ideas - but surely Weiner should have known all this if she was going to spend years in front of audiences and young people as she has - endorsed by so many in the ED world. Surely Weiner knew better than to "learn" this and still get it so wildly and publicly wrong?

I guess not.

For some of the best analyses:
Kate Harding
Margarita Tartakovsky
Deb Burgard
Katja Rowell
Claire Mysko
Becky Henry
Atchka
Carrie Arnold