August 31, 2012

I think it is murder

People are talking about recent cases where judges have been asked to decide whether gravely ill anorexia patients can be "allowed" to die.

I think it is murder. Slow murder that has been going on for years with many accomplices, with the judge as the last. To hospitalize without restoring normal health, to depend on the mentally ill patient's insight and motivation, and to believe the real person in there "wants" to die: these are crimes. Unwitting crimes, I know, but we would do better for someone in a coma. In fact, we do.

This is all a basic misunderstanding of the nature of anorexia nervosa, which robs patients of insight and motivation just as a coma robs the patient of consciousness.

If they "allow" her illness to kill her they are making themselves more comfortable, not her -- she only gets one life and it is not her fault or choice that they've failed her so thoroughly for so long that THEY have run out of options. Or really, WE have.

These half-lives and deaths are our fault. Time to step up, folks. We need to change the public view of anorexia, the healthcare policies, the legal barriers, and our own personal fears.

These patients need our help, all of us, and we're failing them.
  • Anorexia is not a choice.
  • Being unable to eat is not a choice.
  • Having symptoms of social withdrawal and food phobia and obsession and body dysmorphia and binging and purging are NORMAL AND EXPECTED for those who are malnourished.
  • For those with a predisposition for an eating disorder NO amount of malnourishment is acceptable.
  • Simple short-term re-feeding is not enough
  • The patient doesn't need to understand why, be motivated, or cooperate.
  • They are ill: what's our excuse?
  • Without the entire ED community coming together, LOUDLY, none of this will change. But the truth is that most of the ED community doesn't understand eating disorders and are part of the problem. All the attention to self-esteem and loving one's body and Size Zero models and wanting to be thin: it's a distraction. All the talk of "control" and "having no voice" and "attachment" are also distractions.

August 30, 2012

research study to consider

I encourage parents to consider research study participation to help build evidence-base in the eating disorder field. Whether to participate is entirely that family's choice, and should be done not only for altruistic motive but also because the family feels comfortable with the research, the risks, and the possible benefits. It is not any of our job to help the field, but the field can get nowhere without people who are able to participate.

A recent notice I was asked to distribute:

Teenage girls and young women, ages 14 to 21 years old, with ANOREXIA NERVOSA or Severe Weight Loss are needed for a research study looking at the role of a natural hormone on bone health. The study includes up to 11 outpatient visits at Massachusetts GeneralHospital. Participants will receive a physical examination, nutritional and hormonal evaluations, as well as a bone density test at no cost. A natural hormone will be administered, also at no cost. Up to $750 payment for participation and parking / transportation expenses offered. For more information, contact Dr. Madhu Misra at 617-724-5602 or study coordinator Hannah Clarke at 617-724-6046.

August 29, 2012

Double tragedy

That Clare and Rachel Wallmeyer have died is a tragedy for their loving family, but the continued misguided coverage of their lives is ongoing tragedy, still.

I can think of no more famous and ongoing a misunderstanding of anorexia than the Wallmeyer coverage. They are known internationally for their public story of pain. A circus freak show atmosphere has covered their erratic behavior for ages. Their death, together in a fire, provides yet another story for people to gawk and tsk and misunderstand.

But it is not the story the public believes it is. I don't know the family and yet I know the story the media is telling and the narrative is not only flawed but outright dangerous.

The Wallmeyers' reported behaviors and thoughts are completely normal for people with their disorder. They seemed to want to lose weight, reported having no purpose or identity outside of their anorexia, and had infamously poor relationships with others - and one another. None of that is surprising and all of it could have been predicted at 14 when they became ill. If their death turns out to be suicide that, too, will be normal and expected. Half of those who die of anorexia do so through suicide.

What isn't being said is that this is the script of the disorder, not Clare and Rachel Wallmeyer. We don't know who they were. We do know that they did not choose to think or act this way. They did not have a choice at all. Anorexia hijacks its victims and, if the world around them colludes in the plan, destroys them.

It takes intervention from outside, early and firm intervention. It takes savvy family and clinical care and a legal and health system that understands the disorder. It takes feeding and staying fed, a safe environment, and a knowledge that the disorder is not the person. It takes an inventory of co-morbid issues, family resources, and professional resources and applying that knowledge with a view to full and lasting recovery.

Rachel and Clare might be mothers now, have careers and close friends. Their daughters might well be teenagers at risk for eating disorders, and they could be advocates for them.They might have gone on to help others with the disorder. They might be reading of the death of another anorexia patient with deep empathy and sorrow. But the world failed them. Anorexia is treatable. Society's stubborn belief that weight loss is a virtue, that mental illness is a choice, and that people's self-report of their symptoms is their free will is the world's problem and WE need to change.

There is a pair of twins being born today, somewhere, at risk for anorexia. In 14 years they will begin to exhibit symptoms of avoiding food, over-exercising, or obsessive fear of body changes. By then will their parents know the risk and how to intervene? By then will their pediatrician know not to call it a phase? Will the twins have teachers and coaches and friends alert to the signs and matter of fact about informing the family? Will the parents be able to find emotional and practical support for the very difficult job of getting those girls back on track? THAT is up to us.

Anorexia wrote the script for the Wallmeyer story. I suggest that all of us contact every single writer who has reported that story and inform them they got the wrong narrative, and inform them why. Think of Rachel and Clare. Think of the newborn twins.

August 27, 2012

puppies and kangaroos

OK, so I probably shouldn't have thought I could get away with mentioning race as a social and not biological construct in an aside. I grew up talking about race a lot as I am bi-racial but I know people are nervous about seeming racist or even talking about race much, which is why I had multiple private emails about this but no comments!

So, let me answer more openly the kind of questions I got privately.

I had been under the impression that some diseases were more common in some races than others largely because of biology.  I also know that culture plays a huge role in terms of lifestyle behaviors that impact health, access to healthcare, poverty, etc.  But I thought people of different races actually were biologically and genetically different, at least on some things.
Could you please help me understand?  

It's a tough set of concepts to get the mind around (remind you of another topic?). I've just had time to get used to it.

For those of you who have met me or seen a picture of me, most will have experienced me as "white." The reality is that ALL of my maternal relatives are "black." 50% of my genes come from people identified as African Americans (wait: there was a great great great grandfather who was reportedly Jewish, from Jamaica). 

But what about diseases like Sickle Cell Anemia? In terms of screening, my risk is as high as anyone you meet on the street with darker skin. In truth, I have zero actual relatives with sickle cell and probably had zero risk of sickle cell not because of my 'white' relatives but because none of my known maternal line has sickle cell. Being of African-American parentage doesn't make me related to all other black people.

Keep in mind we're throwing an ENORMOUS group of unrelated families into one pool and a small percentage of those families are genetic descendants with that mutation. That small group of carriers don't actually affect those other darker-skinned people's risk of sickle cell. On a public health scale the statistical numbers are meaningful, as screening is a large-scale activity. But in the actual genetic reality two black people are not particularly likely to be related and the part of their genetics they share (relative skin color) isn't likely to be from common lineage. Skin color is not connected in any meaningful way to any other genetic traits. If you look at the world population you'll see all variations of light and darkness and hue with wide variety of hair texture, eye color, facial features and patterns of disease. Color is a melanin thing - how close one's far, far antecedents lived to the equator and their adaptive risk for sun exposure.

A random Italian and a random Norweigan - both "white" - are unlikely to be related. But two Missisippians of any color ARE because the races mixed routinely for hundreds of years. It wasn't always voluntary, of course, but there you are.
it's a melanin thing mix over generations.

American 'black people are almost always a wild melange and their actual skin color bears little relationship with anything. It would seem intuitive to think that it is a matter of dilution and strengthening of genetic relations but it isn't. Far more like eye color, which we largely disconnect from racial origin AS LONG AS SOMEONE IS "white." We don't think of blue or brown eyes, for example, as some sort of genetic tracer and feel some kindred spirit between fellow-Hazel eyed folk. But because racism and class and that Peculiar Institution (slavery) has caused us to think of all people who are discernibly descended from enslaved people as all in one group we consciously forget that all of the "black" and "white" children of a slaveowner equally share in his genetic background. We also try to forget that the reason black folk tend to marry black folk is largely cultural - they're not choosing on the basis of genes and not necessarily mixing the same family lines. I did not know my white relatives as they wanted nothing to do with us - but I did know my black mother's family very well and was more likely to spend time with black people and, eventually, date and have children in that community. Racism has kept races in the same neighborhoods and jobs and churches in the US, in general, folding the mixed kids in with the so-called black folk as if they were more related to them than the white relatives!

Another amusing thing about race is that our cut-off is at visible color. That means anyone with any discernible melanin that isn't fobbed off as "ethnic" is in the same basket. As if there was something holding all those from 3-10 on the color scale (making that up) together and excluding the 1-2s. But we are so used to using ANY color as an inclusion concept that we've come to think it has some biological meaning. It doesn't. 

Fun historical artifact: my birth certificate says "negro" (it was 1961). It was illegal at that time for my parents to marry in some states. 

But I am just as much my mother's as my father's child, genetically. If I had married a discernibly dark-skinned person our genetic kids would be considered "black" by virtue of melanin and culture. But if I was "black" appearing and had genetic babies with a "black" partner is that somehow different? How many white relatives does it take to make you not black any more? How diluted is non-black? You can see how the "stain" theory is absurd - the "one drop" rule as they used to call it. But there is no "stain" of lack of melanin, I notice. 

Is there some quality genetically that carries with the genes for skin color? Nope. Not one.

It is our cultural frame for race that confuses us. Our belief that any visible melanin is a sticky stain that carries other things comes from our sense that African ancestry is some sort of common "other" with more than 50% influence over a baby. Really, the only stain is that concept.

P.S. Bi-racial kids are not cute. Being bi-racial is not like being a puppy mixed with a kangaroo: our parents are the same species and 99.9% the same. There's no reason why being bi-racial makes someone cute. Although of course *I* am adorable, personally.

P.P.S. The term bi-racial is ridiculous. It breaks the rule I just discussed. And yet, I find the alternatives awkward and forced. Sigh.

P.P.P.S. Interesting editorial today in SciAm on this topic: when should medicine talk about race?

August 24, 2012

why can't we all just get along?

Here is an excellent illustration of why we need as a field to come together on what an eating disorder is, and what it is not. The episode below, part of a series I otherwise adore, treats "eating disorder" as a term we can all just interpret. You can take a range of intelligent, insightful people and ask them their opinion about eating disorders - in this case it is African-Americans - and they all have things to say just as they do about tipping and camping. Everyone, it seems, has an opinion and get to define the term.

Although the demographic is different than the usual, the opinions here are standard issue: wanting to be thin, identity, culture, desire for control, emotional solace. A set of behaviors, choices. There's a range of views here but not one describes eating disorders as a mental illness or biological in nature -- or with a significant genetic predisposition --or treatable, which I would argue are the most important facts.

Just the topic tells us so much. If the question was "do Black folk have diabetes?" there'd be a different frame here because we'd be talking about a disease that everyone recognizes for what it is. Nobody would be riffing on autoimmune theories and endocrinology - they'd talk about their sister who had it and their uncle who lost his toe from it. If the topic was cancer no one would even be asking the question: it wouldn't be seen as cultural.

We need clear terms and a clear view of what an eating disorder is so people will stop thinking of eating disorders as something everyone is an expert on, and start thinking of them as something people -- including black people -- not only have but recover from.

Oh, and before anyone says it, I will. Black folk aren't biologically or genetically different than white folk. Look it up. Black and white Americans are more likely to be related to their opposite race next-door neighbors than they are same race folks on the opposite coast. Race is a social construct, not a biological family. If that sounds odd to you think of hair or eye color. Think about it: are green-eyed people from different families more likely to be related to one another? 

August 22, 2012

I dare you to stop watching this!

I don't know why it should be a guilty pleasure but it is: I'm loving this series of online TV segments on WIGS. I dare you to watch the first one in this series and not click on the second. But I'm warning you, your next week is going to be shot because you're going to start watching all the different series. There's only one that I watched Episode 1 and said "meh" and didn't continue. Each segment is really short so you'll THINK you'll "just watch one" but you won't.

It's a strange genre of programming and they haven't quite got the pacing right for the format at times (the Christine series is the exception: perfect for the format) and the episodes can be a bit uneven, but the acting is excellent and the characterization is astounding in such short bits.

I also don't have a clue why it is aimed at women. That annoys me. But doesn't keep me from clicking "next video."

Better to know

I can't tell you what joy xkcd gives me:

Everybody Jump What would happen if everyone on earth stood as close to each other as they could and jumped, everyone landing on the ground at the same instant? —Thomas Bennett (and many others)
This is one of the most popular questions submitted to this blog. It’s been examined before, including by a ScienceBlogs post and a Straight Dope article. They cover the kinematics pretty well. However, they don’t tell the whole story. 
Let’s take a closer look.

August 19, 2012

A woman of a certain size

does Mommy Dearest's dysfunction look
too big
in this dress?
Does my weight matter? I am a woman of a certain size. Average height, average weight range, statistically, for an American woman which means I am what the charts would deem "overweight."

I share this because it matters to something that we rarely talk about in the ED world, but often THINK about: the weight of the mother of the patient. I have been aware that people scrutinize this ever since I saw my weight status written on my daughter's assessment. I remember feeling odd during mealtimes when I went to ED events, wondering if people were watching what and how I ate. I have in turns worried that I may appear too heavy and people would think "Oh, the eating disorder was about not wanting to be like mom" but on the other end I have thought "I'm glad I'm not thin enough to make people nod and smirk, either."

Countless mothers, on learning the diagnosis of their son or daughter, point to their own (over or under) weight as a factor in some way, and often have to be talked off the ledge of guilt this makes them feel.

I can laugh now, but it's embarrassing to confess: I once ate two lunches one after the other because I was hungry before a lunch event and went ahead and ate early but then felt totally inappropriate to say "I'm full" in front of all these people who were surely watching me for odd behaviors expected of "the mother of the patient" so I said yes and did the most DISordered thing by eating again.

I wonder how it might be different to do this work if I was shaped differently? What if I was markedly smaller, or bigger? What if I had celiac disease or allergies or diabetic and had to turn food down in public? What if I had an eating disorder in my own past history? What if I had a distinctly ethnic appearance, or was in a wheelchair, or was a man? When I had surgery last year I lost some weight and remember thinking that this could be a problem in the ED world and realized just how nuts it is in our society to be worried about appearing to be dieting!

It is impossible to be body-less and without an appearance, and yet whatever body you DO have will affect how people hear your message. Luckily, I have no desire or plan to change my genetically and mentally happy state either way! It is taboo, of course, to talk about appearance in the ED world or to judge body size, which I love, but I have no illusions that people aren't ever THINKING about it.

Have you, as a parent or activist, felt YOUR body and eating habits were being analyzed? Do you do any analyzing yourself, of others?

August 18, 2012

random heresy of the day

So, do anorexics want to be thin more than other people?

That may seem like a really obvious question but if your answer is "of course: look at them" let's chat. First of all, visible low weight is an end-stage symptom and patients may not appear thin even when floridly mentally ill. No amount of weight loss satisfies or relieves the desire: in fact the reverse is more common.

(Worth noting here that many patients don't even report being interested in weight loss before being tutored in the language of eating disorders during treatment. See "effort after meaning")

I'm willing to bet that while the desire to be thin is ubiquitous the difference between the anorexic and the non-anorexic isn't the depth of desire but a different way the brain processes disgust and restraint and reward. What seems to be the "reason" to lose weight may not be different than everyone else who starts dieting or purging, and may not be stronger. We get confused by the "success" and assume a greater motivation by dint of the results. Anorexia makes it possible to continue to refuse food and to continue exercising despite energy imbalance: that's not "available" for most people, thank goodness.

Treatment that focuses on that motivation, and advocacy on decreasing that motivation, what evidence do we have that it helps? I'm deeply skeptical. Feels like guarding the well while ignoring the river.

Now the corollary: do people with binge eating disorder want to be larger than other people? Funny: you're probably struggling more with that one.

a little anorexia isn't so bad....

Why is it SO HARD for people to get their minds around eating disorders as a real and distinct mental illness?

There are a few reasons but here's the most difficult barrier: WE AGREE WITH THEIR SYMPTOMS. We agree that people should be afraid of gaining weight, should be pressured to be thin, that more exercise is better, and that food should be a daily battle of morals and good character. We think extreme measures to manipulate our body size are understandable and obsession with the scale is a healthy behavior. Not eating and not enjoying food are considered virtues. Our collusion with these ideas blinds us to when they are symptoms of something terribly, terribly wrong.

It's horrible, but a life-threatening mental illness causes symptoms that are so normalized by society that it can make the ill seem normal and the normal rather sick!

We don't do this with the symptoms of Tourettes or schizophrenia but our society's collective inanity about appearance mimics the horrific suffering of the most deadly mental illness to the point where it is not uncommon for people to actually express, OUT LOUD, envy, as in "I could use a little anorexia, myself!"

That's REALLY sick.

August 17, 2012

Ode to Joy

Charlotte, it is really frustrating to have the same arguments with people endlessly, isn't it?
Seems pointless, really. Wouldn't it be great to just get that other person to SEE or to be quiet or have others shout her down? Wouldn't it be amazing if that person had an epiphany and DID understand and we all moved forward together?

But let's remember:
  • The actual person posing the question is just one person while the answer is for everyone, anyone, and over time far far more people than you'll ever know. 
  • It may be the same question, but the question itself is valid and shared by many. It deserves an answer. 
  • It may be the same distorted response but we are also helping others like us in examples of how to answer.
  • It's the umpteenth time for US, but there's a parent out there who is new to all this and will want to hear it.
  • By treating that person with respect, anyway, we dignify our humanity and theirs.
  • These arguments are similar to what faces parents during caregiving and modeling a caring and calm response we're practicing what we preach.
  • The arguments against good sense will always be there but their presence and persistence, and the genuine pain they represent, are something we need to brave, not fear.
  • It's okay for someone to be wrong on the Internet. 
  • Truth will out.
  • Sometimes what I'd really like to give "some people" is a hug.

Civility and projecting one's voice

So, civility - and the lack of it - is a daily struggle in activism.

I'm listening to Martin Luther King's "I have a dream" speech right now. There is nothing conciliatory about it. He was absolutely clear on right and wrong, on who was responsible, and what needed to be done. His demands were deeply threatening to many, and gave hope and strength to many others. Now, looking back, they seem inarguable.

Standing up against intolerance and prejudice is not a matter of beating others up. There is a line between standing up and stomping on, and it is even more important that we speak up when our allies go too far as it is those we disagree with.

I do try. I was raised to believe that losing your cool only hurts your cause. I was also schooled to know that if you are saying something unwelcome your opponent is going to take refuge in anything you do that is less than 100% on the high road.

Keeping my cool is hardest when I feel someone is being manipulative, hurting others, using me, or hurting themselves. I've watched as people have lost their cool, and others kept it, under a lot of provocation. I really get the losing it - even envy it: I'd love to "go off on one" as a friend would say. I can't though, because a lot of people are depending on me not to. "But they deserve it!" is sometimes true. Other times, I don't share the affront but do sympathize.

Once upon a time, parents and other dissidents in the world of eating disorders had no voice at all. Now, there is a voice for almost anyone who wants it, but it isn't always calm or measured or even right. I am in the position of criticizing fellow heretics, and being criticized by association.

No matter how "right" you are, no matter how provoked, it is possible to go too far. In fact, it is probably inevitable. I do cringe, and I do plead with allies to reconsider their attacks. These kinds of exchanges just devolve into competition for being the most victimized and misunderstood. They are a distraction from the issues at hand. But never forget that people who dismiss an idea because there are people who take it to the extreme didn't want to have an honest exchange - they're looking for an excuse to dismiss you. It's best not to give them that excuse, but it doesn't change the responsibility to respond.

MLK was criticized for being too patient, too cooperative, even while he was alive. Yet those wishing to go further, faster, by "any means necessary" at that time seem pretty tame now. Ten years from now ALL of us will be obsolete. Meanwhile, I am more of the MLK school. There are times to shout, times to whisper, and knowing how far to project one's voice effectively is an evolving art.

August 16, 2012

Yep, dysfunctional families ARE dysfunctional

"If parents of an ED patient are dysfunctional then that must be part of the reason for the illness."

No, sometimes parents are dysfunctional and their kid develops an eating disorder. And that REALLY sucks for all of them. Parents who are bad at parenting, mentally ill themselves, or genuinely bad people aren't as likely to be great caregivers. This should surprise no one.

Yet somehow this has gotten tied up with the idea of cause and meant that all the perfectly average and even stellar parents live under a cloud of suspicion. There is a dogged conviction that the majority of ED families are dysfunctional when that is clearly the exception. People cling to these ideas with an evangelism that is frightening, as if questioning it means one is condoning abuse and the torture of kittens.

If you suck, then cause is assumed and let the games begin. And if you seem normal? There's an answer: you're TOO perfect or we need time to figure out what you did to "contribute to" your child's life-altering deadly disorder.

Don't kids need good parenting ANYWAY?

Sucky parents aren't good for anyone. And even great parents need all they've got to respond well to this crisis.

Don't let your child fall off the growth curve

There's a really important tool to help diagnose and track treatment that is rarely used, and even when used too often mis-used: weight for age percentiles. That sounds complicated but it's not. All you need is

August 15, 2012

Help a promising filmmaker create a film that could change lives in India

What does the topic of trash recycling in India mean to you? Probably not much, but if you learn about it you may change your mind. Documentaries like the Don't Waste People project offer more than a view to lives you can't otherwise see but lets you make a difference in those lives, and then of course to yours.

Please check out Julia's short, passionate pitch and her very reasonable goal and consider a donation - large or small. This is a topic close to my family's heart and the filmmaker is the daughter of a dear friend but beyond all that it is the kind of documentary that can truly help people who have no options, and few champions. Even a little help may change lives!!!

I'd like the thank the Academy...

eating disorders blogsOkay, I'd like to thank Healthline, but it isn't as catchy.

Thank you, Healthline, for choosing this blog as one of the 18 Best Eating Disorder Blogs of 2012. It means a lot to me and the description of the blog was really touching:

"...Not afraid to throw a few verbal punches, Laura’s Soap Box is not for the faint of heart. This no-nonsense “anorexigenic” mother dishes advice, personal stories, eating disorder news, and well-meaning rants to encourage parental responsibility and effective treatments for children with eating disorders."

It's also great to see some of MY favorite blogs on that list! Congrats to all the winners. Now, the after-party!

breastfeeding, and FBT

Many of the arguments about Family-Based Maudsley Treatment feel familiar.

I was probably well-trained for FBT advocacy from years in the breastfeeding gauntlet. I've heard the "well, I could never have done that!" and the "well, it isn't for everyone," and "Well, your success at that makes me feel guilty for not doing it."

Not "succeeding" at breastfeeding isn't a mark of poor parenting and not "making a success" at FBT/Maudsley isn't an indictment of anything.

You cannot make someone successfully breastfeed, or homeschool, or bake fresh bread, or love fresh apples. None of these choices work if they are NOT choices, consciously and thoughtfully volunteered. This is also true of FBT/Maudsley. It is less likely to work for those who have it forced on their family  without options. None of these lovely things ARE right for every situation and anyone who says they are is a mindless zealot (I actually haven't met any).

I don't want everyone to have to engage in FBT; I want everyone to have the opportunity.

The point of offering parents a choice isn't about browbeating people it is about opportunity and judgement. If we believe in a certain idea the best way to promote it is to truly believe that people will choose it in the right situations and then to respect them when they do NOT make the same decision you did.

P.S. In case you're about to comment on this (people always do) with "but aren't you telling people they have to do FBT/Maudsley because you say it is "the only evidence-based approach for anorexia and has the highest rates of success for adolescents ill for under 3 years" but I'm not.  Just as "penicillin has the highest rates of success on certain infections" isn't saying that all infections should be treated with penicillin or that no other antibiotics can be used. Citing the actual success rate is important information in making choices, not telling them what to do. Insurers, national health systems, and parents who think higher rates of success equals no other choices need to sit in the naughty corner and reconsider.

August 14, 2012

Secret terror of parent activists

The "Secret Terror of Anorexia parents" article just out in the Australian Sunday Telegraph is a sad and, well, terrifying example of good thinking run amok and causing real and preventable harm.

I know, and respect, some of the people quoted here but I suspect they have been misquoted and misinterpreted. The article is a wretched and embarrassing case study in poor science literacy. I imagine this is what it was like when germ theory was gaining currency but people just didn't really understand it. Now we seem to be in a transitional period where people are acknowledging biology and genetics but just CAN NOT let go of their myths about the environmental piece so they fit them in to the new science knowledge as if one gave credibility to the other.

Folks, you didn't cause your son or daughter's LIFE THREATENING MENTAL ILLNESS with your off-handed comments and by having had body image concerns or even by your own eating disorder. There is zero evidence that you even CAN do that if you set out to. Can you affect your child's self-image, weight concerns, and self-esteem? Yes, of course, but not to the level of mental illness and there is no evidence that ED patients have had more or less of these influences than anyone else. Why do people keep saying there's evidence of this? Because they have personal investment in these ideas and have weak science literacy. Eating disorders really are qualitatively and quantitatively different than the normal spectrum of brain functioning.

By way of analogy, look at schizophrenia. There was a time when we thought that the thoughts and behaviors were caused by traumatic experiences and secretly terrible mothers and that we could push people into madness and "drive people crazy." Now we know that the delusions and compulsions and deficits are almost entirely biological and pre-wired. There are psychological and experiential influences but they are not this facile accumulation of psychological assaults that even popular culture has largely abandoned.

Look at OCD. Will the parents of patients be more likely to display some of the same traits? Do we examine how orderly and fastidious and anxious the parents are for clues on why Johnny washes his hands dozens of times a day, or see great meaning in how Mommy "has" to color-code her shoes? We do, but not to assign cause but to inform diagnosis and plan treatment.

Children don't live on some precipice between normal and the abyss of dire mental peril that parents must perform perfectly to avoid.

I am the first and loudest parent in the bunch to CONDEMN the weight shaming and body-hating and negative influences by parents and society and would have them STOPPED as terribly damaging for all children -- for all of us. But I would not measure that damage by the incidence of mental illness nor would I allow myself the logical error of seeing those symptoms in the mentally ill as some barometer of the environment.

Kids with EDs develop these thoughts and behaviors independent of environment, coincidental to environment, and in concert with environment. Weight concerns and food phobias and body image distress don't have to have anything to do with environment and most kids suffer the onslaught of horrible environments without becoming mentally ill but they, too, deserve not to have to.

It is natural that parents new to an ED diagnosis would look to their own behaviors and words to understand "what happened?" It is our job as a community to shout, loudly, that such explanations are almost childlike in their logic and very nearly evil in their effect. 

August 13, 2012

push back from clinicians is a warning sign

A short, essential message:

 if parents are getting "push-back" about their

involvement in treatment, "that's a warning sign."

August 12, 2012

Tic talk, Tic talk: time is wasting

Think brain problems can only be approached with drugs, surgery, or despair? Good news: the brain can be healed in the same way it develops: through learning. This will surprise those whose brains explode when they hear me say "parents don't cause eating disorders" and lose consciousness before they hear the second part: "parents and treatment providers can change the environment to help fix brain problems."

The NIMH's big brain, Thomas Insel, describes it well in his latest blog post about interventions for Tourette's. In a post that also mentions the "flowering" of behavioral treatments for other brain issues -- including anorexia -- he also describes a behavioral technique for tics in Tourette's, a disorder that is "one of the most neurological of the neuropsychiatric syndromes."

The news of effective behavioral techniques for mental illness is the kind of progress all of us desire. Drug treatments, while often life-saving, are still blunt instruments for a delicate task. Finding ways to help a brain re-train and strengthen alternate functions is something this particular organ is designed to do.

But psychotherapy isn't risk-free nor is it always intuitive. It takes skills to apply, and thoughtful use of the evidence and theory - not just good intentions and attractive myths. The answer to the question below, Dr. Insel, is "yes. and NOW. and how can we help you make it happen?"

As the success of behavioral interventions becomes more widespread, we will need to address an “inconvenient truth.” For medications, we have a well-developed pathway for regulating use. A prescription for an antidepressant medication yields the same treatment, no matter who prescribes it. By contrast, we don’t have the same regulatory process for behavioral treatments. There is no federal agency that oversees the quality or effective dose of psychotherapy. And there is no easy way to assure that the behavioral intervention provided in practice is the same as the behavioral intervention tested in a research study. With the increasing evidence of the value of behavioral interventions, is this the time to develop a rigorous process for qualifying their use and ensuring their uniform dissemination?

August 6, 2012

out of touch, out of mind

this kind of turnover is good, too
I am in the mountains of West Virginia this week surrounded by fir trees and mist and High School Marching Band campers. My job is the night shift in the girls' bunkhouse.

There is no phone service here, or for many miles around. But there is a wifi signal and I know how to use it (unlike the campers who weren't supposed to bring their electronics but did anyway and are offended not to know the password.)

Being a bit out of touch and in the woods this week is particularly appropriate as this is also the week when F.E.A.S.T. announces that I am retiring from my position as Executive Director of F.E.A.S.T. December 31. It is time for me to give up full-time rabble rousing and get back to my life as a writer that ED so rudely interrupted.

But the truth is, after 10 years it won't be the same life. I am changed and so is the world. My daughter is long recovered, graduated from college and has her own job and apartment in a city over an hour away. My son is starting high school next month and has a busy schedule. My husband, who has paid the bills and supplied the necessary support for F.E.A.S.T. all these years, wouldn't mind if I was less worried about other people's children all the time. I'm even a different writer - years of communicating madly with the world hasn't hurt, I hope. I have more ideas, more interests, more insights than when I was 40 and had not stepped into the Rabbit Hole.

The eating disorder world has changed, too. A Google search of "Maudsley Approach" used to yield nothing but a reference to a doctor talking about an idea - but no book or source for parents. That's changed: although Maudsley is still tragically rare it is no longer considered controversial and there are good references easily found for those who wish to. Parents have a new reputation as well. It is now far less common for mothers and fathers to be overtly blamed: the new angles are "contributed to" and "not ALL families." But there's progress and there's momentum thanks to SO MANY PEOPLE, and I am proud to know many of them, maybe most of them.

When I started in this activism I was very much alone. I was neither invited nor noticed at the first few eating disorder events I attended. It took years to even get noticed enough to be controversial. I was thrown off the only parent forum I could find for saying all the same things F.E.A.S.T. says now. Now we have many parent activists and a genuine cohort of strong advocates. We've influenced activists and advocates throughout the ED and psyc world.

Others must, and I believe will, step forward. I'm ready to support the next wave of activists. Not because the job is done but because I want to support it as it grows in ways I haven't yet thought of. There are skills out there and new ideas that need nurturing. I want to leave while I still love it and let F.E.A.S.T. develop as a group.

Activism isn't about us as individuals. It is about all of us together. I wanted the parent community I know to have a voice and it has - a strong voice that is distinct and principled. What that community does now is up to YOU. Get involved. And be in touch!

August 4, 2012

Beautiful video brings F.E.A.S.T. article to life!

A F.E.A.S.T. mom has published a beautiful video show animating Carrie Arnold's Ten Things I Want Parents To Know,  published by F.E.A.S.T.

I wish this as a gift for the very first thing every parent sees when their son or daughter is diagnosed with anorexia.

P.S. This applies also to bulimia and ED-NOS.