January 31, 2012

The rest of the story

Here's the real story of anorexia. It usually starts in late childhood or adolescence. It is usually worrying to family and friends but they don't know what to do and the person's brain doesn't allow  him or herself to feel ill or ill enough. Various interventions are attempted and rebuffed. At times the ill person does seek help but it fails them because it is dependent on insight and motivation.

Some pass through this time and for a variety of reasons survive and pass out of it.

Others - many - live lives of only slightly visible misery for 15-20 years or so and then die. In their late 20s or early 30s their illness kills them by infection or heart failure or suicide: they give out. Meanwhile they often accomplish great things in their studies, in their work, in helping others before they die but their own internal lives have been isolated and wretched. Their families live in a state of constant alarm broken up by despair and anger and, over and over, hope.

These are the stories that I hear daily from families. Ill people who because of law and custom must be treated as adults exercising free will and end up living in a back bedroom of terrified and exhausted parents or in apartments alone. Half lives spent being looked down on in health clubs, stared at as they run at all hours in the street, tense family events or absent from themjust not attended.

If your loved one has an eating disorder and you are tiptoeing, hoping, wheedling, sulking, just trying to keep things from getting worse: please consider that you're not trying to make today better. You are trying to prevent decades of horrific barely visible hell and a lonely death decades early.

If you are making decisions based on the next meal, the next hospitalization, the next insight - if you think that being a good person, successful in work, and able to follow the news means they are well enough - if you think they'll start getting better once they've graduated, got that job, moved away... think again.

This is the outcome you are trying to prevent:

Children's doctor tortured by anorexia died

January 22, 2012

Recovery from an eating disorder: it's not a number

I'm often accused of being all about numbers and calories and percentiles. Guilty as charged: I am very focused on the medical restoration of eating disorder patients because without that there is no recovery at all - and too much of treatment and talk about eating disorders ignores this fact.

But what is actual recovery, and how is it measured from the outside? This isn't something that can be analyzed by a chart or ticked off a list - but it can be described.

F.E.A.S.T. published what I feel is the best list for parents, written by one of our Advisors, Cris Haltom.

But I am adding this list, gathered from the insights of recovered patients at CCED, to my personal Hall of Fame. Try to read this list of "thoughts about recovery" without choking up - I couldn't!

January 21, 2012

Maudsley approach: "cure is now completely expected"

When a media piece gets it wrong about eating disorders the harm is incalculable, but when a reporter GETS IT and TELLS IT WELL lives are saved, and this article will save lives:

Family Ties Helping Teenagers Rise Above Anorexia

Thank you to the young man and woman in the piece, their parents, their clinicians, The Age, the eating disorder specialists who developed Family-Based Treatment, the advocates out there spreading the word, and to Jill Stark, the reporter.

Families need to hear that there really *ARE* exciting changes in the treatment of eating disorders and that if they aren't being told about these ideas they may not be getting the best care.

"At the Royal Children's Hospital, admission rates have dropped by 56 per cent since the treatment started in 2008. Of the 83 per cent who complete the six-month program, 97 per cent fully recover.



The results have astounded the eating disorders team, who say it has ended the revolving door for patients admitted for refeeding through a nasal gastric tube, discharged for outpatient psychological therapy, only to fall ill again. Some were hospitalised 20 times a year. The average illness duration was seven years.



Now, by involving the whole family, recovery in six months to a year is common. Readmission rates have dropped by 75 per cent. More than 200 patients have been through the program - the youngest was nine.

''Before, we were not really focused on cure because we saw that so infrequently for those who were very unwell. Cure is now completely expected,'' says Professor Susan Sawyer, director of the Royal Children’s Hospital’s Centre for Adolescent Health."

P.S. Now, I know what some of you are going to say, and let me stop you. No one is saying that Maudsley "works for everyone." What we are saying is that FBT/Maudsley recovery rates are far higher than anything else we've got in the toolbox. If you find an antibiotic that helps the majority of people you don't argue about it on the basis of it not working for everyone you get to work finding the 2nd line and the 3rd and inevitably those ideas that works better than FBT  - not defending what we know doesn't work for most. If you want to argue about the effectiveness of FBT compare it to something, don't just defend the need for other alternatives; we already know that. 

January 16, 2012

what does the term "brain disorder" do for you?

I'm preparing a presentation about the term "brain disorder" as applied to eating disorders.

I'm interested to hear from friends and foes and thinkers, all: what does this term mean to you? How does it feel? When you first heard this term did it upset or enlighten you? If you don't use it, why? If you do, why?

cause or reveal

Does weight loss cause or reveal the mental illnesses we call eating disorders?

And, by way of correlary - does normalizing weight cure or mask mental illness?

Or is weight change just a result of behaviors?

When I think about it, the above are the questions that divide the eating disorder world and form the fault lines for the positions that divide us.

Your thoughts?

January 14, 2012

Accepting bad care.

The downside of empowering parents to know the difference between evidence-based care and myth-based care is that when they don't have the option of good care at they know it.

I see so many parents in the midst of crises and forced to make decisions because of circumstances out of their control: insurance, finances, disagreement on direction with spouses, geography, national health systems, co-morbidities that require care outside of ED specialty, parental health crises, multiple family crises, waitlists, age limits... there are more reasons NOT to be able to access the best care out there than ways to access it!

But sometimes we do have to accept care that we know is misguided, futile, and just plain wrong. There is a time to be angry about that, to point it out, and stand up to it... but unfortunately, not in the moment. We have to keep focused on the long-term goal: our loved one's life. There are times when being right isn't an asset, and fighting the urge to say so - to howl at the unfairness - is some of the bravest parenting we can do.

Coming off as the meddling, over-involved, know-it-all, angry, over-reaching, pain in the ass parent of the patient is so easy: All it takes is the faint whiff of our disapproval and a few pointed questions. Being THAT parent makes things worse for our kids in too many situations.

Have I done this? Yes. I've also accepted care that even at the time I knew wasn't good. I've agreed to things I knew I had to because I lacked the authority to stay no. I've worked with people that were great on 50% even though they had it wrong on the other 50. I've sat through advice that I knew we couldn't undermine.  It sucks.

The time to protest that, to try to fix the system, is later. Holding out for that is worth it, and feels great.

January 12, 2012

Perfectionism: in a box

I post this with some trepidation...  but at some point my desire to not encourage the myth that eating disorders are caused by media influence ends up keeping me from cheering for stuff I actually like, like this:



Let me be clear: eating disorders are not an attempt to meet unrealistic media images. Eating disorders are mental illnesses that capitalize on, exploit, and use as cover the fact that advertisers always have and always will sell unattainable perfection in the service of their bottom line. The debilitating body image problems seen in many eating disorder patients is not a sign of the influence of the media any more than compulsive hand-washing is a sign of unrealistic images of cleanliness in detergent commercials.

But I STILL find it important that we help ALL our children develop media literacy and I think the video above does a better job than most because it brings up the signs of aging and race - and has high production values - and uses high-quality satire that is more likely to reach people. There is a place for the scary, serious, judgy stuff (like the Dove Evolution video) but let's keep in mind that ALL this stuff is selling us products and selling us the idea that we're imperfect - even if the imperfection is our self-esteem.

January 9, 2012

It's all about control...ling the on switch

I rejoice for the families and communities of the patients restored to health through this new intervention's success:

Deep Brain Stimulation Found To Fix Depression Long-Term

The implications are staggering.

January 8, 2012

Sugarcoating?

Most people think that body size is a choice. You want to be thin: eat less and exercise more.

In the eating disorders world, more than anywhere else, we know that this is not only medically wrong it is dangerously wrong. Genetics and health history determine body composition, not choice, and we are neither meant to nor can we sustainably game the process. Aesthetics, media standards, charts on the wall: none of these are in charge of what an individual's biological destiny considers healthiest and most sustainable. Holding one's body at a level lower (or higher) than it uniquely needs to be is as unnatural as holding one's breath.

Nowhere is this idea of weight as a moral, health, and appearance choice more dangerous than when we apply it to children. Developing bodies need regular, varied, wholesome nourishment as well as physical activity, sleep, emotional regulation, and a loving safe environment. Children also need adults and medical professionals to help children appreciate and nurture their unique bodies and genetic destinies.

All of these are adult responsibilities.

All of these are failed, unconscionably and cruelly, by the Children's Healthcare of Atlanta "Stop Sugarcoating" obesity campaign.

Shaming children's bodies for their size is little different than shaming children for their their height, color, their shoe size - or their health conditions. This campaign is an assault on children, not a protection.

Even if you believe that children's weight is an appropriate health target (I don't, I believe healthy behaviors are), do you really believe shame works? Do you believe it is lack of shame that is guiding behaviors? Well, I think you are wrong. I think this campaign and the current obesity hysteria that makes it possible is causing untold harm - and no clarity or healthcare improvement.

This hysteria serves nothing but the diet industry and the self-congratulary and self-flagellating weight prejudice so endemic to current society.

Please join me and a growing army of people fighting back against this campaign.

January 5, 2012

Wait, did the paradigm shift and no one told me?

I know this is common in activists and campaigners: we keep haranguing away even after our point is not only accepted but assumed. But, when I read articles like this I want to send it back to Laura2002 with a hug and a high-five:

The Starving Brain by Wenda Reed

I mean, even the accompanying photo thrills me. Look: it's a mirror shot but the distortion is of the person's face, not body size! It's not an empty plate! It is us looking at a young person who is not seeing herself clearly - woo-hoo!

This article is filled with SCIENCE and reinforced by comments by NEDA's director emphasizing the science and the departure from the myths of the past.

It includes comments by patients and their families!

I am going to run out of exclamation points!!

Really, thank you Wenda Reed, and Seattle Woman, and all the people quoted. This is the kind of article that offers genuine hope and grounded information for families seeking care. This is all people like me want, really.

more afraid of the chemo than the tumor?

The jury's still out on how fast to re-nourish a hospitalized anorexia patient: although each hospital has its own approach there is limited evidence on how fast, how much, and how. Personally, I think our job is to stop waiting until a patient is emaciated: if outpatient re-feeding isn't working then hospitalize for ANY lost nutrition. Still, I'm glad to see more attention to the medical issues here and some evidence being gathered: I have heard privately from several clinicians who do think the level of timidity of early re-feeding is based on urban legend and not facts - and in reality may be harming patients in the long-term.

Most alarming, and seen in the New York Times article about a small study on avoiding re-feeding syndrome, is the idea that the patient's desires and distress should be part of the calculation. Yes, eating disorder patients find it traumatic and undesirable to gain weight more quickly or at all -- that's the most prominent symptom of an eating disorder! Avoiding re-feeding syndrome is a VERY important medical issue but can not be obscured by the patient's cognitions and insight.

What if chemo patients were treated this way: their tumors were considered less of a danger than the chemo? Insulin shots and chemo and debriding wounds are all distressing and traumatic but our job is to comfort and support our loved ones through that and not to damage their health by avoiding appropriate medical care.

January 4, 2012

repairing brain damage: with song!

Many people criticize the use of the term "brain disorder," but here is an example of why I find the term optimistic and not fatalistic:

Singing Therapy Helps Stroke Patients Speak Again

The brain is plastic: interacting with the environment and changed by experience. When there is damage, or developmental problems, or an individual is born with a predisposition to a mental illness there is hope through re-building and strengthening and skills-training.

January 3, 2012

Why I won't be dieting in 2012

New Year's diet resolutions are as normalized as midnight champagne toasts. Sorry: I no longer stay up drinking until midnight on New Year's Eve and I sure as heck am not resolving to lose weight this year or any year.

I'm a middle-aged woman with jiggles: isn't it my moral and health obligation to want to lose weight all the time? No. In fact, my New Year's Advice is, as usual, for everyone I know to STOP dieting. They won't listen to me, of course, but still.

For anyone out there still listening, please read Why Lost Pounds Come Back. The piece is notable not only for the content, but for who wrote it. Parker-Pope makes some startling personal observations and I appreciate them because I've cringed and groaned at many of her comments over the years about eating and weight and eating disorders. She sounds as if she is nearly into a new paradigm -- not quite, but the tipping point is near. She has a great deal of power in her position at the Times, so when she DOES get there it will have an impact.

It is brave, in our society and in the healthcare science field, to suggest that weight loss is not the Holy Grail. Many of us in the eating disorder world have accepted that already and we are familiar with the science behind this seemingly endlessly shocking idea.

"Giving up" on weight loss isn't as hard as it may seem. Once I accepted that weight "loss" is really unhealthy "weight cycling" I was able to enjoy eating, exercise, and my amazing body a great deal more. I got healthier, and happier. Once I stopped reflexively and boringly dissing my body size it opened up an enormous warmth for other people as well. I wasn't giving up on anything, it turns out, because it was an unhealthy and and self-defeating illusion. Do I fleetingly, secretly wish I could slip into my 1980s jeans or still use that cute belt I loved as a young professional in Manhattan? Yes, I do. But would doing that for a few months be worth the health damage - mental health included - that would linger for years and probably the rest of my life? Obviously NOT. What a silly, meaningless, irrelevant goal. It's like holding your breath: not sustainable and what for, exactly?

I am quite sure that in 5-10 years few people will still be drinking the Kool-Aid on weight loss -- doctors will be cautioning us against weight cycling, and at New Year's the resolutions will be to enjoy our bodies with good food, good activity, good sleep, good relationships FOR THEIR OWN SAKE. Resolving to do healthy things in pursuit of and measured by appearance is not healthy and not sustainable: and generally lasts until February 15 or so when the self-reproach season begins anew. Thank goodness New Year's Resolutions only come once a year!


January 2, 2012

I'd give up my Mac



I finished Steve Jobs' biography last week. CanNOT stop thinking about it: riveting for a range of reasons.  The topic also makes great conversation. My question to everyone has been: "is it worth it?" by which I mean was Jobs' apparent mental illness worth his success and the Apple legacy?

When I read (and of course I have no way to know how accurate the book is) about how this man's dysfunctional social relations, interpersonal cruelty, maniacal business management, narcissism, obsessional focus and compulsive behaviors led to his fame and fortune -- and they did, it seems -- I don't see how they are worth it. Others around me disagree: they consider his madness to have been both admirable and his own damn business. I see a tortured, ill man who wreaked havoc on others and lived uneasily in his own brilliant mind and body. My ipod and MacBook are heavier when I think about their cost.

Would we take a different view if he had the same personality and attributes but was unemployed and living in his aging parents' back bedroom?

I'm particularly struck by the obviousness of his eating disorder. It is mentioned frequently in the book, but as usual framed as a set of choices he was making. It is obvious to me that his eating disorder killed him, too: he was unable to comply with the necessary dietary and behavioral recommendations of his medical team treating his cancer. His wife and friends were helpless as are most families facing an eating disorder in a self-supporting adult. Driven exercise, intermittent fasting, extreme dietary restriction, and purging seemed to have been taken for granted in this man but are frightening symptoms to me.

But his children have lost their father: will they some day question how a treatable mental disorder played a role in their family's fate, and consider it differently as society better understands mental illness over time?

Mental illness is almost always limited to certain functions, not a global mental problem. People with extreme and life-threatening eating disorders can and often do continue to perform at high levels on thoughts and tasks unrelated to eating and the body. There are many examples of geniuses of many types who are floridly mentally ill with other disorders.

Had Jobs been my father, son, or brother, I don't think I would consider his business and design legacy "worth it" for the suffering he experienced and caused. I would rather he receive treatment and recover from his eating disorder, and from co-morbid conditions (many have been proposed -- including personality disorders and Aspergers and OCD and bipolar -- but of course we can never know).

I've taken this "not worth it" position in many conversations this past week, and most people have disagreed with me. Fame and wealth and our pleasant kludge-free electronics seem their own reward. Finally, yesterday a friend of my daughter's said I did have a point: "He wasn't Churchill" he said. "He invented the iPad."