July 31, 2008

Genetics loads the gun, environment shoots the messenger

It has long seemed to me that the mental illness we call "eating disorder" is a shapeshifter. Eventually we will probably break off parts of what we call anorexia/bulimia/BED and see them as different illnesses. And eventually I think we will see that the same disease manifests itself in various ways, as in Anorexia, 'bigorexia' may have same genetic roots.

I believe treatment outcomes will improve, stigma will decrease, and collateral damage of the disease will be prevented as we better understand the biology of the illness.

July 30, 2008

What's up with Mental Health Parity law?

The Eating Disorders Coalition is the go-to resource for news and action on US national legislative action relating to eating disorders and mental health. When they say jump, it is our job to act.

The mental health and addiction parity compromise bill that was agreed to by House and Senate negotiators is included in the Jobs, Energy, Families and Disaster Relief Act of 2008 (S. 3335), which is expected to be considered on the Senate floor the week of July 28th. In June, the Senate failed to invoke
cloture on a tax extenders package by 7 votes.

To keep that from happening again, we need to engage a swift and decisive grassroots campaign. It is essential the Senate pass this package before the August recess so that parity legislation can also pass the House and be signed into law by the President before Congress adjourns for the year in September.

ACTION: Have your advocates call their U.S. Senators by
using the toll-free Parity Hotline: 1-866-parity4 (1-866-727-4894). (The Parity Hotline reaches the U.S. Capitol switchboard, which can connect callers to the offices of their members.)

MESSAGE: “I’m calling to ask that the Senator vote for the Jobs, Energy, Families and Disaster Relief Act of 2008 (S. 3335). The Senate must pass lifesaving mental health and addiction parity legislation included in the bill before the August recess."

TARGETS: All members of the Senate.

To find your Senator's contact info
To see how Senators voted on the June tax extenders vote

To learn more about the EDC

July 27, 2008

I was wrong

I was wrong.


I have been soundly, and rightly, spanked for my assertion in a recent post that "you look great" is anything more or less than it says. I was ungracious and feigned unearned virtue.


I could try to explain and excuse and contextualize, but I have caused offense and it is more important to apologize sincerely than comfort myself.


I am sincerely sorry.

July 26, 2008

July 25, 2008

What would it take?

What would it take to get everyone to stop thinking of an eating disorder as a conscious choice to seeing it as something (reparably) wrong with the brain?

Organic Background of Restrictive-Type Anorexia Nervosa

July 23, 2008

Nice to see you

I don't get out much, but the other night, I met some fellow writers to discuss a manuscript I'm working on (fiction, and nothing to do with eating disorders). I gussied myself up a bit - something I rarely do in our small town where I work from home and have few business or fancy social occasions at which to put on airs.

Interestingly, these days when I brush my hair and wear a dress it is out of town and at an eating disorder event.

All this is preface to say that I was completely flummoxed by the words "You look great!"

In the ED world it rarely happens. Yes, people dress their best and clean their ears, but commenting on appearance is, just, well, not done. Who has the heart to: the over-valuing of appearance sounds too much like the mental illness which brings us together. But it is also taboo and tasteless in that community. And rightly so.

I believe our society's fixation on appearance is utterly wrongheaded and poisonous (my parents are civil rights activists, after all - I was raised to look deeper than appearance). I do NOT believe this stuff causes eating disorders (though it can trigger dieting, which does), but it is clear it delays diagnosis and stalls recovery when the eating disorder's craziness is hard to distinguish from the rest of our silliness.

But it was interesting to observe my own extreme discomfort at each person I met going on and on about my "looking great" because I wasn't dressed to pick up hay at the feed store. I was awkward, really awkward, and I said stupid things and I'm sure I seemed quite rude not to just reciprocate "Oh, you, too!" Because I simply don't do that any more.

I just wanted to get on to other topics. "HOW are you?" "What's up with you these days?" "How're the kids?"

Ironically, I must report that one of my reactions was to comment on someone's arm cast - which if I want to be entirely consistent is an aspect of appearance so why comment on it? Habit, trying to be sociable, deflecting attention... I'm a hypocrite.

Getting free of that appearance stuff has been lovely. It didn't happen overnight, naturally, but I'd not realized how very far I've drifted from the mainstream. How unnatural it is to me now to do that whole "you look great; I'm a mess" dance. As if I've been living in another culture and come home for a visit to discover how bizarre my family's habits really are.

I didn't go on a consciousness-raising rampage, though it was tempting. I just appreciated how far I've come. And how far we all have to go.

July 22, 2008

What trust really means

"What we heard was 'I don't love you'.....which was just our fears talking. When we finally buckled down to try fighting this thing again, we came to accept the truth underlying what she was saying: she 'didn't trust us' to set and keep boundaries to protect her from ED. That was just as painful to hear, but at least it gave us something we could do something about and gave us the motivation to keep trying."

I doubt any parent gets this early on - we certainly didn't. It goes against our experience and training as parents up to that moment. But once we did, it changed everything. When we saw the anger and fear for what it really was - we knew our job was to stand up to ED. To listen to our daughter's needs, and not her words, until she was ready to take back that responsibility.

July 21, 2008

I don't see it.

"No one likes me." "I have no friends." "She always stares at me." "They were talking about me behind my back." "I don't connect with anyone."

Impaired central processing of emotional faces

I certainly noticed that when my daughter's illness was worst (nutritionally and weight-wise) she misinterpreted other people's emotions pretty wildly. The same friends who were unkind, the same teachers who were unfair, the same situations that were once poisonous - changed when she healed. (I don't think they changed - I think it was her brain, and the altered way she reacted to people.)

July 20, 2008

Exponential improvement in treatment

OK, radical statement alert:

The video's title is about chronic eating disorder recovery but the statement in question has to do with the direction of treatment in the future.

"The solutions will be interventions with the brain."

Remember in The Jeffersons when the maid looked at the African American family and their wealthy African American friends and said "Did we overcome and nobody told me?"

When did we go from it being controversial and unproven to call an eating disorder a brain disease to it just is?

July 19, 2008

That's cheating!

Well, this is a new twist: 'Dangerously thin' climbers face ban

What fascinates me is the way it almost sounds as if anorexia is cheating. Like losing weight instead of gaining muscle is akin to some gimmick like using a corked bat or that fancy new swim suit.

FYI: losing weight is not the same thing as being anorexic.
Losing weight can trigger anorexia, however.
You can't "see" anorexia in some one's appearance, it is a mental illness.

Measuring illness, and motivation

We often measure the toll of eating disorders by the mortality rate (5-10%). A new study has added to that by calculating the fact that anorexia can take 25 years off life.*

We cite these statistics in hope of convincing the public to take eating disorders seriously. We are trying to quantify the pain, and motivate people to step in to help those who are suffering.

We also throw these numbers around hoping to motivate patients. This is where I draw the line. If patients were making a rational calculation of risks and benefits and choosing the illness that might be helpful. But it is clear they are not. Fear does not get calm other fears. The illness isn't won by numbers, ironically.

I would argue that these statistics don't begin to describe the anguish and ruin of eating disorders. Lives trapped in misery, lost relationships, families destroyed by watching a loved one suffer, and the burnout of clinicians struggling to help patients who are unable to comprehend or escape this cruel illness.

We don't need a death rate or a calculation of lost years as much as we need better tools to change those statistics. No parent watching a child suffer like this needs those numbers to measure the anguish.

* link to paper

July 18, 2008

Why not?

A thought experiment.

Everyone acknowledges (okay, not everyone, but some people also believe the world is flat) that nutritional rehabilitation and maintenance is the cornerstone of eating disorder recovery. We argue about how, how fast, and who should be in charge, but the goal is clear.

What if: once diagnosed with an eating disorder the patient was thereafter monitored for 100% nutrition and optimal body composition as if that was the minimum standard. Like blood sugar for a diabetic, any drop in status was reason for alarm. Like asthma, which is factored into health status thereafter. No more 90% or "out of immediate danger."

What if: when we brought our child to the doctor ANY weight loss or failure to meet appropriate growth goals would be reason for alarm and a plan.

What if: no one ever had to lose weight before assertive intervention.

What if: a patient not maintaining or gaining according to medical need was assumed to be unable, and not considered unwilling, and loving intervention was immediate and compassionate.

What if: medical, therapeutic, educational, athletic, and personal supports all held full nutrition as a no-compromise zone.

What if: no one diagnosed with an eating disorder was ever allowed by society, clinicians, or loved ones to sink one missed meal, one new diet plan, one pound below their optimal nutrition ever again?

July 17, 2008

Eating with your anorexics' mothers


Monday I had a F.E.A.S.T. Parent Council phone meeting - eleven people on the call - great ideas, great progress. Jumped on a train to New York.

Tuesday I met a young woman in the F.E.A.S.T. community who collects sporks and is in recovery - we had coffee at Grand Central Station.


Wednesday, I had lunch and conversation with some F.E.A.S.T. parents:

Today.... who knows?

July 16, 2008

cause and trigger



The word "trigger" is used a lot in association with eating disorders.

Patients tend - and are often trained - to identify the trigger for their illness. Divorced parents, moving across country, competitive school, bullying.

It seems to me that triggers are not very important if the illness can be triggered by anything from watching a TV show to surviving the Holocaust - if you have a certain genetic predisposition. What we call triggers are what I believe they call in the law "proximate cause." Life is a trigger, and the real question we should be asking is "what is the best trigger lock?"

Was it SuperSizeMe, or was that person's brain simply waiting for the next sensationalist media food experience? Was it the bullying or was that the greatest source of genuine stress at a time the brain was primed to begin the disease process if stress happened?Was it training for the race, or was this person attracted to track because her brain was looking for a way to express its underlying illness?

I have often wondered what we'd do if we discovered that eating disorders often started on Mondays. Would we create a six day week? Would we castigate society for relaxing too much on weekends?

July 13, 2008

Separation anxiety

My son went off to his first sleepaway camp today. He's ten. I've aged ten years since the vans pulled away. I've cried, laughed, worried, giggled, and now as night falls... my heart hurts.

I know what you're thinking: overinvolved, enmeshed mom.

He's probably laughing right now. There are s'mores and the wonders of a latrine at night ahead of him tonight. Laughing at life, at a camp full of boys just like him, at the prospect of sleeping in a tent and his best friend by his side.

He's not thinking of us right now, but I'm thinking of him.

The EXTREME luxury of having one child off living independently and one child off safely enjoying a new experience: I get it.

But I'm still crying. Sue me. Motherhood is an extreme sport.

July 12, 2008

Another thing the autism community has to teach us

It is my fantasy for the future that eating disorder diagnosis would be when they first appear (usually puberty and early adolescence). People would be wise and on the alert, and act quickly.

I dream of a time when after diagnosis a patient would immediately be referred to a team of experienced and well-trained clinicians who offer a range of effective treatments at one location, with a seamless connection between levels of care, and full integration of the family and community.

In my hopes for the future, patients would be treated on an outpatient basis from home to full remission in the first 6-12 months, and a plan in place to both strengthen the patient against relapse and for lifelong monitoring for nutritional and emotional health.

But even in my most optimistic fantasies, I know that some patients will need a higher level of care from the beginning. I know that some patients will relapse, and some patients will need different levels of care at different ages. So now I have a fantasy for that, too: that places like the Mifne Center in Israel would be created for anorexia, bulimia, EDNOS, and BED.

The ED world has much to learn from the autism community.

If the inpatient and residential treatment community would welcome the whole family into residence, offer us tools and education, and continue to support us as a unit when we go home... we could do wonders.

July 11, 2008

Columnist can’t self-diagnose anorexia

People are so easy to chide self-diagnosis: reader can’t self-diagnose anorexia, needs to see doctor, but fall easily into a worse trap: peddling old and damaging ideas.

I'd like to vacuum the Internet and the industry of these tired ideas: "Most of the current theories revolve around self-image problems and family dysfunction."

But the sad fact is that most doctors will remember the same (wrong) thing from their hour of med school on eating difficulties. And most doctors aren't trained to recognize, treat, or understand eating disorders - so if you suspect you or a loved one has an eating disorder don't just go to a doctor - make sure to press for a specialist in eating disorders.

Start with members of the Academy for Eating Disorders, or of the International Association of Eating Disorder Professionals. Regularly attends the American conference put on by the National Eating Disorders Association, that's good, too. And no, it is not rude to ask. Anyone who is willing to treat your child, but not willing to belong to one of those groups or receive ongoing training, may not specialize enough to save your child's life. Eating disorder research is moving forward every month - your child deserves a clinical team that is up to date.

July 10, 2008

Feasting on Research

I am so happy to announce a new service over at F.E.A.S.T.: the Feasting on Research blog.

Our staff writer, Carrie Arnold, is an excellent writer and thinker on the topic of eating disorders research. As the author of two books on the topic, and as a science journalist, Arnold brings great skill and experience to the topic. She also knows the illness from the inside and outside: as a patient.

F.E.A.S.T. commissioned the Feasting on Research blog to offer parents a view of current research findings using language and context we can USE in supporting and seeking treatment. Already, she has posted two pieces rich in detail and of great interest to information junkies like myself.

I am so glad to have this resource available! I look forward to reading and learning. Thank you, Carrie Arnold.

July 9, 2008

Make the calls TODAY

TODAY is the day to help make history, to join with mental health advocates within the eating disorders world and all the tireless crusaders in the larger health community.

To stand up for everyone in the US who has struggled to pay for mental health services, who has felt stigmatized by the way mental health is "separate and UNequal," to stand beside those who have lost children and loved ones to illnesses for lack of insurance coverage.

To repay the years and years of work on our behalf - even before we knew we needed these services. And to protect the families who will some day join the world of eating disorder treatment.

This is National Call In Day for Mental Health Parity. Celebrate it by making the calls. Every call matters a great deal - YOU MATTER.

July 8, 2008

Please come to Austin!

Please come to the National Eating Disorders annual conference in Austin, Texas, September 18. This conference is designed to be a gathering place for families, clinicians, researchers, teachers, activists: everyone.

There really is nothing like it. You can walk up to authors, researchers, and the leading THINKERS in the ED world and shake hands. You can chat, share a meal, exchange ideas with other families. You can listen to fascinating speakers, and hear about new research and new approaches to treatment.

F.E.A.S.T. will be an exhibitor at NEDA's conference, and we support NEDA's mission to connect all people involved with eating disorders. I'm looking forward to seeing fellow parents and activists again - and meeting new ones.

I was once asked - and once wondered - whether an eating disorder event was grim and technical and sad. After all, eating disorders are no fun, right?

But I can truly say that the mood at these conferences is welcoming, inclusive, and warm. I always leave these events feeling energized and optimistic. Does everyone agree on everything? No. But when better to listen and speak about what matters, and try to bring about change?

Will I see you there? (Registration fees go up July 18 - don't delay. And if you want to cut costs by sharing a room, let me know and I'll help match people up.)

July 7, 2008

One week, six countries, 100+ members

When F.E.A.S.T. recently opened up membership, we wondered what the response would be. We hoped families would want to get involved, we hoped what we are doing was valued.

It has been a very emotional week, as I've watched the memberships come in.

124 families, clinicians, patients, and friends so far.

Six countries.

Scores of offers to volunteer, and to speak to the media.

And more passionate messages of support than I can count.

On behalf of F.E.A.S.T., thank you all for this vote of confidence. We are working hard to provide information and support to families - and we work for you!

If you have not yet joined (no charge, only takes a moment, privacy assured), please do. We need to know who we serve, and what you want.

July 4, 2008

Hear yourselves

I have had the honor of chatting by phone with several families this week for the audio recovery stories at the F.E.A.S.T. site. They are from 5 minutes to 20 minutes and will make you cheer, laugh, and sometimes cry... I did.

"You would never know that she had been ill" A mother describes the recovery of her 15-year old female ballet dancing daughter with anorexia (AN-P) - US Gulf Coast

"We worked as a team" Mother describes a daughter who as a college student developed depression, anorexia, and bulimia going on to recovery after several years with help of family and nutrition and supportive therapist. US Midwest

"To see her personality come back and blossom was an unbelievable blessing for us" A mother describes a 22-year old daughter with anorexia coming home to recover, fully, After 4+ years of grave illness. SE Wisconsin, US

"Mom, I'm not stupid. It's not going to happen to me." A mother of a daughter with anorexia describes her then 13-year old daughter wanting to 'eat healthy' and progressing to anorexia and compulsive exercise. , mother emphasizes role of nutrition, early intervention, good clinicians, hard work. Michigan, US.

"All of a sudden she didn't want cheese on her hamburger" A mother in Oregon (US) describes her teen daughter's recovery and preparation for college.

"We're here for you whether you want us or not. We're not giving up on you." A mother and father describe their daughter's recovery from EDNOS. Boston area, US.

July 3, 2008

The dilemma of the anxious

"...start thinking in gray"

My husband is fond of a quote about the futility of publishing poems: "like making love to a sleeping woman."

I won't make you read any, but I do write poetry.

It comes out of a delight with language. I'm often stopped entirely by a phrase, as I did with the phrase above. It epitomizes the dilemma of the anxious. Rigidity of thought, an inability to "set shift," is a strong characteristic of those predisposed to eating disorders - and their families.

An anxious mind seeks rituals and clear rules. Ambiguity and nuance are a tough sell for a mind tortured by repetitive and exhausting thoughts of calamity and wrongness.

I appreciate that phrase because as a daughter of two races I chafed at the terms people wanted to call me - "mixed" "mulatto"... or worse. As a teenager I chose another word: grey.

And of course, moving toward age 50, the color gray sparkles back at me in the mirror more every day.

I love the phrase above for its poetry, and poetry only touches us when it communicates something true.

Thinking in gray strikes me as a most profound sign of healing. A marker of wisdom. A delicious secondary benefit of recovery, and of witnessing the recovery of a loved one.

(It bothers you, doesn't it, that I used both grEy and grAy in this post. So there. They're both right, depending on where you're from. case in point.)

July 1, 2008

rituals

The rituals and rigid beliefs of people with obsessive compulsive disorders are very powerful. In popular culture we tend to look at things like compulsive handwashing, or the need to eat certain things at certain times of an eating disorder as just extreme thinking.

And we try to reach the person with reason and facts.

I think it is better if we understand that it is us who don't get it, not them. We don't get how very strong these cognitions are, how primal the fear, and how a particular part of an otherwise rational life can be so far removed from the reality we live in.

And if you need an example, consider the boy who thought 9/11 was his fault.

And then revisit why an eating disorder patient "has to" stay below X pounds, or "can't" eat before 10am, or "must" eat from that particular bowl.