June 30, 2009

Reporters Starving for Perfection

I shouldn't complain. I would have been so happy, five years ago, to see all the good things in the CBS report, Tweens Starving for Perfection.

Talk of predisposition, of the dangers of the OBESITY hysteria: yay! The refreshing lack of the phrase "all about control" and not one word of parent blaming. I should be very happy.

But it ends with this:

"If parents notice behaviors like these, Shaw said, parents can start by having the child's doctor talk about the importance of eating from all the food groups, but if it's more serious, she suggested the child may need to be hospitalized."

Head = Desk = Head = Desk.

Eating disorders are not wrong thinking gone overboard. Eating disorders are a brain disorder triggered by physiological processes like undernourishment, stress, illness, over-exercise. That little chat about "eating from all the food groups" may be DIAGNOSTIC but it isn't therapeutic.
Start with a diagnosis based on behaviors and attitudes and get the information from the parents. Start with an eating disorder specialist familiar with and trained in the most recent advances in treatment. Start with normalizing food and behaviors around food. Start early. Start strong.

The distance between "we're going to visit your doctor" and "hospitalization" is an educated parent.

June 29, 2009

ED's power to alienate family, and a parent's power to keep loving

Chronic sufferers of eating disorders, more often than not, report not being close to family.

One thing that interests me a great deal is the way ED uses compassion as a tool to set parents up to withdraw; a withdrawal that can lead a patient to feel rejected. Parents who are continually rejected and facing hate and disgust from loved ones learn there is little they can say or do to lessen the bad feelings. Love is taken as weakness. Concern is taken as criticism. Parents learn to take a neutral distance just to stay nearby. They stay close, but try not to make things worse by engaging. This of course can lead to long-term alienation. It is heartbreaking. I believe this dynamic frays and sometimes destroys relationships. It isn't the patient's fault, nor is it the parent's fault.

One mom describes, in real time, how she faces and counteracts this pattern: mummy-love, touch and ED's rage: "I was withdrawing from K and increasingly reluctant to reach out to her and face that rejection"

I so admire this mother. I could have used some of this wisdom when my daughter was ill - and I believe it has much to teach all of us.

June 25, 2009

appetites

I was intrigued to read 'Activitystat', Not Physical Education In School, Drives Activity Levels In Kids because I have long suspected that the appetite for food and activity - as well as the internal sense of satiety with food and activity - are regulated in ways that are neither conscious nor particularly manipulable.

June 24, 2009

Dads And Daughters With Eating Disorders

Finally, a dad blogger in the eating disorders world!!

Dads And Daughters With Eating Disorders

Binge

Some interesting work on binge eating:

By Studying a Syndrome That Affects Only a Few, Scientists Hope to Help the Many Who Overeat: 'I don't think there's going to be a pill.'

repeated binge access to a palatable food alters feeding behaviors: "Repetitive cycles of palatable food access and chronic calorie restriction alter feeding behaviors and forebrain neural systems." - which sounds a lot like our modern approach to eating! Diet, binge, diet, binge.

June 23, 2009

"how she helped herself make sense of it all"

There are a lot of books out there with old, misguided ideas about eating disorders and parents - some of them even by parents. It saddens me to think of parents new to the diagnosis who read and believe them, but I'm not into book burning so I'm putting my hopes on the newer narratives and books with new science and thinking. I look forward to parent voices that are fierce and loving, not penitent and guilty.

Another one for THAT bookshelf, by my friend Amanda:
Son's battle worth writing home about

Congratulations, Riche! Congratulations, Amanda, and the smart publishers who I hope will be on your doorstep bidding for a contract!

Brain-derived neurotrophic factor (BDNF) and set-shifting in currently ill and recovered anorexia nervosa (AN) patients.

Interesting site for science breakthroughs and interesting progress on BNDF as a biomarker:

Brain-derived neurotrophic factor (BDNF) and set-shifting in currently ill and recovered anorexia nervosa (AN) patients.

"BDNF may emerge as a useful biomarker of AN and of recovery from AN"

June 22, 2009

Thumbs down from patients

I'm sure most parents know that the Internet is filled with teen angst, and that an eating disorder brings out some of the worst of it, and that Family-Based Maudsley gets a vigorous thumbs down from patients during the treatment, but some may need a reminder of the cognitive dissonance and fear and subterfuge of patients:

PSA For The Purgatiorium

I also suspect that a parent or two who read this blog may see their own child on that thread.

June 21, 2009

Quality, quantity, and a meat-based speaker's fee

I had the distinct pleasure of being the invited speaker yesterday at Fields of Athenry, in Purcellville Virginia. After the talk, I enjoyed a truly delicious outdoor potluck dinner and the company of a table of fierce activist women.

When speaking at an eating disorder event my mission is to describe the history and possibilities of the role of parents, and to make a plea for evidence-based practices, to an audience that may have set ideas about both parents and practice. When I speak to a general audience about eating disorders I'm hoping to dispel general myths about eating and eating disorders.

This talk was a different kind of challenge. Fields of Athenry is a haven for those seeking a healthy relationship with food - farm-raised, local, wholesome ingredients. The audience knows and embraces traditional, nutrient-rich, unprocessed foods. The Farm is a resource for healing and learning and darn good food. So how do you say "there are no good foods and there are no bad foods" to this audience?

Well, ask if they have any of those garden-warm hand-harvested tomatoes ready to throw at you before you say it!

To this audience it was not radical to say "food is medicine" but it was controversial to say "there are no bad foods."

I don't know how successful I was at conveying this, but my argument to this audience was one I still believe applies: Food is not magic. A Krispy Kreme donut is not poisonous. And a grilled teriyaki tofu wrap does not make a person healthy. What we choose to feed our family overall is, of course, of consequence. We do need to make choices about healthier ingredients - not all food is equal. But using the language of morality and framing food choices as good vs. evil is perilous.

Perilous because it makes us all sound like eating disorder patients: obsessive, rigid, trapped. Perilous because this thinking is negative, fear-based and punitive. It frames our relationship with food and "health" as a moral issue with all the attendant disdain and condescension onto others. It makes our weight and health into a simplistic judgement on our eating habits. And of special interest to me: this kind of approach to food makes it very hard to distinguish those among us with genuine mental illness in need of intervention.

Families can (and in my opinion should) plan and prepare and enjoy wholesome foods chosen with an eye to nutrition and avoiding damaging ingredients - that's not inherently disordered. I call that embracing health and enjoying one's family table. The "no good foods/no bad foods" mantra of eating disorder treatment isn't a "it doesn't matter what you eat" 365 coupons a year to McDonald's. It isn't a purgatory of dry bulgur wheat. And balance doesn't mean a 1/2 Big Macs and 1/2 Organic life, either.

I left the Farm, and Brad and Elaine Boland, the generous and kind owners, with a satisfied appetite and much to think about. Nestled in the back seat was a bountiful gift of fresh chicken and steaks that will nourish and be enjoyed by my family this week - relatives of the animals I walked among at the Farm. I've never received an honorarium in meats, before, and I'm looking forward to enjoying every bite!

The dabbler files

Instead of bruising my head on the desk every time I encounter a new unfounded theory on the cause of eating disorders, I've taken to creating The Dabbler File:

Diagnosing and treating eating disorders is not an amateur sport. Why do so many people feel they can just come up with a theory that suits their worldview and not examine the facts? If they are hearing it from the mentally ill patient, ought they not take that at face value? Don't they fear they risk LIVES when treatment is delayed or derailed on specious theories and pet topics?

June 19, 2009

"anorexia is as biological as autism"

A mention of F.E.A.S.T. in Time Magazine today:
A Genetic Link Between Anorexia and Autism?

I really think we're going to learn a great deal about both autism and anorexia by these lines of research and thinking. Finally we are moving off the antiquated ideas and getting to techniques that actually help.

The parents of autistic children had to cause a ruckus to get the ball rolling. We've got to do that, to, not just building on those successes but finding allies and common goals with groups working on autism, schizophrenia, bipolar, depression, neurological illnesses, endocrine and digestive diseases - everywhere there might be clues.

Eating disorders in older women

Another myth it may be time to put to rest: eating disorders that start in adulthood. And all the more reason why we need to catch eating disorders early, act assertively, and maintain lifelong monitoring:

Eating disorders in older women: Does late onset anorexia exist?

June 18, 2009

Give an inch, take a milestone

"'You would think if parents are helping, the kids would be less impaired,' Merlo said. 'But what we are seeing is that it snowballs and makes it worse and worse.'

"Facilitating children's OCD behaviors may worsen symptoms

This goes for eating disorders as well, clearly. When parents accommodate the "no dressing!" "no meat!" "no food after 5!" "only at 150 degrees!" "I can't drink whole milk" or "I can't eat with so-and-so in the room" we are so ready for them to agree to eat we can become accommodating to other demands. This doesn't decrease the demands, though, it makes them worse.

If I could give every parent a message early on in supporting recovery it would be this: do what you know they need, not what they say. Don't accommodate ED no matter what threats or cajoling he does. Be firm, consistent, and have a plan.

June 16, 2009

Normalizing crazy

"I hate it when my disordered thinking seems normal"

It must be our urgent task to change the way our society thinks of food and bodies so that we stop normalizing disordered thinking!

No more dieting, moralizing, chiding, self-hating, and using food and activity to manipulate our bodies. No more bragging and preening and ogling and Life as Competitive Reality Show. No more XXXX-free, "guilt-less," food as magic, food as evil.

And end to 95% of our life being taken up with appearances (size, skin, hair, house, car, handbag).

We need to stop normalizing crazy so those in need of help and intervention are easier to spot and we aren't hypocrites when we do. Let's stop making crazy normal so we can live happier and leave our kids healthier.

The dangers of anosognosia

Perhaps the most confusing thing about anorexia is that the patient can function so well in other areas of life: school and work, for example. Patients who are floridly ill can remain quite lucid and intellectually engaged on topics outside food/body. This confuses loved ones, as we expect all abilities to thrive or fail in tandem. This even confuses many therapists, especially those unfamiliar with eating disorders. It is hard to believe that what we are seeing are symptoms and not free will.

Patients with anorexia are often "anosognosic" - they truly do not feel ill and they experience their own behaviors and thoughts as normal. This is not a choice or conscious denial - it is a brain condition. This anosognosia is dangerous on many levels, but frightening when it guides policies or public opinion.

I am reading with amazement the fashion columnist Liz Jones speaking with such insight and compassion for others but seemingly entirely unconscious of what seems to be a very serious mental illness driving her behaviors and thoughts. Reading her description of her "experiment" in eating normally - and then going back - I feel helpless and horrified. She has an illness - but what's OUR excuse? I want society to step up and get her help as we would if she was wandering in the street with a head wound. I want no one to be able to mistake what she is describing for a desire to be thin. I want her to be relieved of her post and brought to hospital.

And I don't want this person to be discussing or guiding fashion. It scares me to think of how many people guiding and guarding that industry are actually ill.

Fatten me up! What happened when former anorexic Liz Jones had to eat normally for three weeks

I weep when I realise how many other women starve themselves like me

June 15, 2009

"the cooking apes"

My daughter pointed me to this review: ‘Catching Fire’ by Richard Wrangham and I shall be very interested to hear the impressions of others on this!

June 14, 2009

Why it matters

Why does it matter whether or not parents cause/trigger eating disorders?

Cause leads treatment approach. Assuming parent pathology leads to marginalized, demoralized, ineffective parents - no matter how good their parenting was before. These assumptions lead to treatment that validates distorted views of family and relationships and undermines parental trust. It means ruining the confidence of good parents, and worsening relationships with poor parents. It creates lifelong sibling rifts, strains marriages, and reframes family histories.

Treatment that assumes parents are unnecessary or harmful to recovery replaces family with what? Therapy? Recovery done in isolation from people? Repeated inpatient stays? Chronic illness? I ask because I wonder what the alternative is: we don't get generally get a second family to choose from.

During the active illness, most patients believe their parents are pathological - that is a symptom of the disorder.

For the minority of parents who are indeed harmful to their children, the eating disorder is only one of the problems to address. For the majority that are not, marginalizing parents at the very time their children need them is an irreparable harm. I am saddened at how many out there are willing to take that risk.

Treatment for the former

I've heard from some people in the comments for the apples and oranges post that I should not divide eating disorders into categories.

Actually, I'm not saying there are two disorders. I'm saying eating disorders are a mental illness - a brain disorder. (apples)

I'm saying people who are on unhealthy diets and dislike or hate their bodies don't necessarily have an eating disorder. (oranges)

Does that clarify?

Treatment for the former should not be treated as if it is the latter.

June 13, 2009

"sympathy and understanding" or "scorn and condemnation"

"In 1974 a small group of parents became the first in the nation to publicly refuse blame for causing their children to have schizophrenia. They formed Parents of Adult Schizophrenics and their activism led to parents around the nation demanding changes in how the disease is understood and treated....[T]hese families launched one of the fastest growing grassroots movements the nation had seen to date, ushering in an era of dramatic advances in understanding, treatment and brain research." Said the founder of Parents of Adult Schizophrenics, Eve Oliphant, in a 1977 speech to the World Congress of Psychiatry, "We failed to understand why parents of a child with leukemia were treated with sympathy and understanding, while parents of a child with schizophrenia were treated with scorn and condemnation." These quotes are from a film documentary, When Medicine Got it Wrong, that was shown recently on PBS stations around the country.
Chris"

flies in the web

I have about 30 blog posts in my 'draft' file that I want to finish - so much wonderful research and thinking going on out there. But frankly, it would be weird NOT to post about some online stuff that has been going on this week.

I can't really do the issues justice by running down all the twists and turns of it in a one-sided post. A lot of things have been said this week online that I'd love to have the satisfaction of an open discussion about, but I'm pretty sure that isn't going to happen. There seem to be some blind spots - either mine or in others - that make real conversation impossible. A lot of apple vs. orange stuff, a lot of vocabulary issues of all sorts. And a few bullies.

The arguments in the eating disorder world about cause and treatment remind me so much of other social movements I've seen personally. Racial equality, for example.

I'll illustrate with an anecdote. I was once at an elegant dinner party with new acquaintances - I had recently been elected to the board of a religious organization with the husband. Sometime between appetizers and the main course the host complimented his gardener by noting that he was the rare exception of an intelligent person of that 'race.' Eyebrows were raised, and an explanation ensued, referring to the Bell Curve theory of race and intelligence.

The others in the room began a lively discussion of the issue in a jovial and intellectual banter. My husband was silent. I was dumbfounded. As it became clear that the host was not joking and the other guests found this conversation stimulating and not stomach-turning I rose and said to my husband that I was ready to go home, and we did, without another word.

Turns out the host and his wife and the rest of that organization thought I was "oversensitive" and had been rude to leave. I was asked to apologize to the host. Why didn't I want to debate this issue? Was it because I am of mixed race? Was I calling my host a racist?

Look: someone has to stand up. Some things are simply unacceptable. It is not closed-minded to say that some ideas simply don't have merit and are harmful. It is not insulting someone to tell them they're wrong and they've hurt me. The affront is not coming from the one who says "stop."

I'm not sure why it is still unacceptable to say "Parents Don't Cause Eating Disorders." That argument is done. If the head of the NIMH, the APA, NEDA, NICE, and B-eat can say it, it is time to move on. We shouldn't have to keep re-establishing this, or be considered "extreme" or "black and white thinkers" or "attacking therapists" or "judgemental." Saying parents don't cause eating disorders doesn't mean I have an "agenda" or that I'm just self-serving. Saying this doesn't have anything to do with Maudsley, or feminism or any of our favorite causes. It doesn't have anything to do with me, personally, or people who I associate with.

It is time to move on to loving and protecting and effectively treating eating disorders. It is time to stand up from polite dinner tables (and online forums) and let the burden of proof be on those who still believe these things, and let us associate with those who help and not harm. Good intentions are not enough when the consequences are so very dire.

Real change will come when the people standing up from that table are not just those personally affected. Some day the only one still sitting will be the one called to account.

June 12, 2009

Parents do cause oranges!


My dear friend Malia made an excellent point recently (she makes so many of these, routinely) when she looked at the staggering kerfuffle over at Poppink's blog (also being played out on the AED forum, the ATDT forum, the Somethingfishy forum, in this blog's comments, and in my inbox...). Malia said we're talking apples and they're talking oranges.

At least its all about the food.

She's right. This comment on my blog kind of articulates it: "While there are parents out there that do care. That are in no way responsible for their children's eating disorder... there are parents that were a large contributing factor to their child's development of one.My parents were certainly the largest contributing factor to mine. The reason I like your blog is because it has shown to me that some parents do care about their children enough to want them to get help for their eating disorders... My mother used to call me a fat ass day after day, among other actions and words.When she found out I was abusing diet pills, diuretics, and laxatives... she didn't get me help - she asked me if they worked and started taking laxatives herself."

If you think of an eating disorder as dieting, feeling bad about yourself and your body, and struggling to find yourself in life - and to many people that does define an eating disorder - then sure, parents can cause an eating disorder. Parents can abuse, neglect, hurt kids and leave children wounded, emotionally disabled, permanently victimized. Parents can commit "relentless boundary invasion at every level" and do horrible damage. Parents can push or allow a child to diet, binge, self-harm, purge. And without a doubt, parents can transmit negative body image and self-doubt and insecurity. But is that an eating disorder?

When I speak of eating disorder I'm talking about a mental illness. I'm talking about a brain condition where the behaviors of restriction, bingeing, purging, body image distortion, obsessional thinking about food, and social isolation are SYMPTOMS. I'm talking about a phenomenon that happens to people with a genetic predisposition and only under certain circumstances. This brain disorder doesn't discriminate - it strikes happy healthy families and wretched dysfunctional families. Anorexia and bulimia and their variants may look, in early stages, like dieting and compensating and our culture's (stupid) obsession with looks, but I'm talking about a very different fruit here.

The problem is that they look similar at one end of the spectrum, and an eating disorder starts out looking like something we recognize. And - this is the important intersection - dieting TRIGGERS the mental illness we're talking about by setting off something in the brain that the person afflicted isn't consciously aware of. Dieting (or losing weight accidentally or failing to fuel growth or activity) triggers eating disordered thinking in the brain for a certain percent of us.

I'm talking about a mental illness that malignantly takes over a person's life and personality and tries to kill them. I'm talking about something that isn't a choice, and the person can't be talked out of or reached rationally. This apple is poisoned and requires outside intervention to be revived from.

Mistaking apples for oranges here is serious stuff - recoveries are stalled as we lose time trying to make orange juice with apples and wondering why our apple pie is so citrusy.

Thank you, Malia, and thank you Kat, for helping me sort the produce here. Neither of you should be held responsible for the tortured orchard of analogy here. And Kat, I am so sorry your mother was so ineffective and hurtful. I fear she may have an eating disorder herself and that is no position to raise children. With a time machine we could go back and heal her so she could have better nurtured you!

June 10, 2009

Celebrating Internet moms

I know there's a lot of nonsense on the Internet, and a lot of us who bring printouts to the doctor's office get laughed at and some deservedly so. But the Internet saved my daughter's life, allowing my family to get the information we needed and would never have been told - about the Maudsley approach.

I know of many families who found the information they needed through Google and PubMed and message boards. Information on diagnosis, on treatment, on books to read, on avoiding bad treatment, misdiagnoses, drug side-effects, diagnostic tests, and on finding specialist clinicians.

Here's one particularly inspirational story: A Mother's Love and Determination

**Thanks, LeslieG, for the lead!

June 6, 2009

Number One Reason for Developing an Eating Disorder

What, I wonder, is the best way to deal with public statements that blame parents for eating disorders?

Ignore?
Protest?
Engage?

I look forward to your comments.

Number One Reason for Developing an Eating Disorder

"Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level."

Food Police at Huff Po

"We are a culture that delights in chiding parents and moralizing about food and we are never happier than when we combine these passions."

June 4, 2009

thinkable

Relapse happens.

Friends respond.

Join them!

A friend

A friend of mine is struggling.

I spend my days focusing on what parents can do, and what friends of parents and professionals and the community can do for parents, but I am less familiar with what friends can do. We can... care. (feels inadequate to the problem) Worry. (how annoying is that - worry without action isn't helpful and can even be taken as insulting) Check in (again, the fear that too much checking in is annoying or seen as lacking boundaries).

More better, I'm thinking:

Witness. (My grandmother really is a Witness, which doesn't qualify me but hey, I'm improvising here. I can witness the struggle and mark it and honor it and not run away.)
Be part of the web (On the web and on the phone and in person if possible be part of the network of people who care and are there and form the strands of safe landing as best one can from a distance)
Be one of us, not one of them (When I struggle, with anything, it is made marginally better to know that people understand and exponentially worse by exposure to those who misunderstand. I know this illness for what it is: a parasite - and patients for what they are: heroic. "WE" live in a no blame, no shame, no guilt eating disorder world. WE also know this is a treatable illness and not a failing or something you just 'live' with helplessly. WE believe in action.)
No platitudes (I can declare a no-cliche zone. I can do the work to come up with fresh things to say and not bat away distress with tired phrases. I can risk saying the wrong thing as I struggle to say true things. Look: I already fell into a cliche. Sigh. I'm working on it.)
Not everyone can be the mom (My friend has a mom and clinical support, and both are the best in the business. Thank goodness for that. But there are other roles. How about aunt, the nice neighbor on the right, older stepsister, fierce friend, cousin once removed, part of a family tree of connections no less real than random genetics provided us. I can try to be one of the people I need around me.)

I'm working on this list. I welcome ideas.

June 2, 2009

The difference between 1968 and 2009

Before this weekend the last time I was on stage in a dance recital I looked like this:

I've changed:

The biggest difference between 1968 and 2009? This time I had fun!!