Wednesday, April 18, 2007

There is no way to prevent anorexia

As I wrote the title of this post, I felt a wave of despair. Until a couple of days ago, I had never put this thought into words, never articulated it to myself. But it's true.

Two years ago I would have said of course you can prevent anorexia. I certainly never believed my daughter would develop it.

She was smart. She was funny. She was self-aware. She was eminently rational, and had been since toddlerhood. She watched no commercial TV. Her videos were carefully screened. She was a feminist before she started kindergarten.

Every kid in her sixth-grade class had to do a research paper on a subject of interest. She did hers on eating disorders. Looking back, I understand that that right there was a clue. At the time, I thought it made her safer because she had knowledge, she understood, and she was warned.

I thought that years of modeling a healthy attitude toward my own body would protect her. (I was fooling myself there, too, but I tried hard.)

But here's the thing: Nothing that she did or I did protected her from anorexia. Because there is no way to prevent an eating disorder.

If anorexia could be prevented, we wouldn't need to be talking about treatment. We wouldn't need to watch children suffer or families unravel.

I know from my own daughter's experience that knowledge does not prevent anorexia. She knew more about anorexia in sixth grade than many doctors do. She understood the dangers. More, she knew she was--as a gymnast and perfectionist--at risk. But it didn't help.

I'm all for the studies now being done on treatments for anorexia. They're long overdue. But where are the studies on prevention? Why is no one even asking the question of how to prevent anorexia and bulimia? Cynthia Bulik has looked at anorexia and twins--this would seem to be a perfect area of research for her.

We know that genetic predisposition plays a huge role in eating disorders. We know that environment can be a catalyst. How does the famous saying go? Genes load the gun and environment pulls the trigger. What we don't know is how to put the safety back on the gun. We'll never know until we start the scientific process of figuring it out: coming up with hypotheses, testing them, recording the results, making connections.

I've watched half a dozen young women I know--all of them bright, funny, well-read, engaging--fall prey to anorexia. I can look around at the young teenagers I know and predict, now, who's at risk. It's like watching a train wreck in slow motion.

Treatment is crucial. God knows we need better treatments for anorexia. Maudsley treatment is the best we've got so far, and it saved my daughter's life. I'm grateful. But it's not enough. Enough is when we can keep kids from becoming anorexic in the first place.

I don't have the answers. Maybe it's a combination of things: a vaccine, education, behavior modification in those at risk. I don't know. But I do know that until we start asking the question, we'll never find an answer.

12 comments:

mary said...

Maybe we need to stop pulling the trigger. Today's society sends a message that we are all broken, all too fat, and if we just shed a few pounds and throw on our cape before we head out to show the world how smart we are all will be well.
While we didn't prevent my daughter's first episode with an ED, despite thinking we also prepared her for life, perhaps we can prevent the next from ever happening. Perhaps helping her to be stronger and more sure of herself WILL be a prevention at work.

CARRIE ARNOLD said...

Mary,

Hmmmm. I was just going to say that. Almost every disease is a combination of genetics AND environment. The genetics part is pretty hard to do anything about. The environment, however, is a different story.

Take the case of PKU (phenylketoneuria). People who have this inborn, genetic disease cannot process phenylalanine, an amino acid. The by-products build up and cause brain damage and death around age 2. It was thought that PKU was a purely genetic disease, a simple DNA mutation. However, if people with PKU are prevented from consuming phenylalanine by eating special shakes that contain all their nutritional requremens sans phenylalanine, they grow up to be perfectly healthy. So environment is also important.

And that's my spiel on genetic disorders- can you tell I used to work in a human genetics lab? :)

Harriet Brown said...

Maybe we need to stop pulling the trigger indeed. The trigger would account for the seeming rise in incidence. In an era where plump was considered beautiful, there would be less dieting, especially in adolescence, and less descent into anorexia.

You put it so well, as usual, Mary. And Carrie, thanks for the lesson in genetics! :-)

mary said...

The genetic work seems to be getting closer to giving us an answer. The fat gene has been found! Hooray!It's matter of putting it to use in those whose weight may jeopardize their health. The gene for anorexia can't be far behind.
This isn't to say that we don't need to change the messages we hear every day!
Harriet, you have a victory if your daughter beat her ED. That it left you with the residue of fear as well as a passion to see a cure makes you one of the pioneers in fighting this whether you are a scientist or a mother who writes.
It just amazes me how long it's taken to get some parents to understand that food is a medicine. One can't talk about their problems and hope it nourishes their body. One must eat.If they can then invent a new way to approach their life that protects them from further invasions then they need to go for it.I not beneath using any and every trick in the book. ED's must be outsmarted!
Using Maudsley treatment may get easier when there becomes specific gene therapy to compliment it.
Still, due to bad journalism, media hysteria, and a basic lack of compassion and respect for differences, we have become broken in more ways than anorexia. Fixing it may mean speaking up more publicly about what changes need to be made. Only once have I written to the editor of a paper and it changed many things. This came after many appeals to the 'wrong' people one on one. When the whole town could read everyone stepped out of their hiding places.

Shedding light seems to be your strength Harriet. I hope you continue to use it well. Years ago I decided that I didn't get handed 'strange' problems without there being a reason. It is these types of experiences in life we can invoke change with if we use what we learn to educate others. Not everyone gets this, but you do. Use your pen.
I prefer to remind people to rest at times, to smile, and to distract themselves so that they can get their work done, which is why my own blog isn't about ED's, it's about everything.
Now I am thinking of finding a way to get our voices out there explaining why 'acceptance' can be a health of it's own. I too am just plain tired of seeing and hearing how to lose weight.

Starla said...

I had a coach tell me almost the exact same thing about my d, "there was nothing you could have done to prevent the anorexia from happening." That seemed fatalistic at the time. Many things you described about your d fit mine too.

So now I have 3 younger d who have the same gene pool....The genetics are there but hopefully my eyes are wide open so that at the 1st hint of anything, we would catch it fast and it would never progress to the horror of anorexia. I wouldn't see dieting as harmless and I would know the most effective treatment so that you don't waste time trying the traditional ways as the behaviors get more and more entrenched.

Hopefully by being open with our struggle, it will help others. I know of at least 2 of my d friends who's Moms got them into treatment 15 pounds earlier than my d and what a difference. The knowledge didn't prevent it but it sure made a difference.

CARRIE ARNOLD said...

And I think there's a difference between saying we can't *prevent* anorexia and saying we can't do anything about it. Maudsley is a promising (in fact, the MOST promising) form of ED treatment.

Like you said, Starla, improved recognition can lead to improved prognosis. Please, however, don't beat yourself up for not catching your d's illness sooner. Ed is a crafty beast.

That's another thing that I think contributes to anorexia: a tolerance for lower weights and dieting (otherwise known as malnutrition).

In public health- the field in which I work now- there is general prevention (in which the prevention program is presented at everyone) and targeted prevention, where the program is only given to those deemed at high-risk. I had OCD for about 7 years before my ED, and other compulsive behaviors for about 7 years before that! My first therapist (with whom I have many a bone to pick, but she did have the occasional insight) said that if my OCD had been treated properly in high school, then I probably would never have gone on to develop AN. The whole anxiety thing. The rituals surrounding my ED are quite gruesome. The AN really is those rituals. Therefore, educating parents about the need for proper nutrition in kids with anxiety/mood disorders is a great way to start heading off AN. This would, of course, imply that mental health disorders were adequately diagnosed and treated, which they aren't. I didn't know I had OCD. I didn't know what it was, that it had a name.

I'm rambling now. Too long of a day at work.

Harriet Brown said...

I think all of us parents who have watched our children suffer through anorexia and bulimia feel there must be something we could have done. We want to believe this because it gives us a semblance of control. Maybe it's also like B.F. Skinner's "superstitious" pigeons--they came to associate whatever random behaviors they were performing at the time food was delivered to be the cause of food being delivered. Association is not cause. Knowledge is not prevention.

Thank you for your vote of confidence, Mary. :-) Shedding light--that is EXACTLY what I feel I can do, imperfectly, sometimes. To tell and tell the story. We each have our talents and inclinations.

Starla, I worry about my younger d just as you worry about your little ones. It adds a nerve-wracking aspect to parenting. I admire your vigilance and devotion; your daughters are lucky to have you as their mom.

Carrie, you're dead on on any number of counts. We do tolerate malnutrition. And anxiety is strongly associated with eating disorders. I didn't know that before; now I do. I've panic disorder my whole life, starting when I was about 8, and I remember so vividly the awful feeling of knowing there was something wrong with me, something different, but not knowing what to call it or what to do about it. I too feel there's hope in our continued understanding and treatment of mental health issues.

I'm rambling too. :-)

marcella said...

I agree that building a society where the "different" can feel safe and no one suffers from malnutrition should be the first priority. Those hour long lunch hours mentioned below would be a good first start.

I was asked the other day what event I thought had "triggered" my daughter's ED. The professional asking wasn't an ED specialist or, as far as I know, medically trained. He was in admin trying to sort out our casework. I floundered wondering whether he was getting at abuse issues or something, and ended up confusing him utterly by saying "we followed the Maudsley Method which is agnostic as to cause". Since one of the reasons why we needed him was that we failed at the MM I think this was pretty stupid. Oh how I wish I'd had Carrie's insights before me when I had to answer him. Your first therapist may not have been much use for anything else but that just about sums up my feelings about my daughter's ED - if her problems before hand had been dealt with (by all, her parents included) rather than brushed away with a "well she's very bright so she'll probably grow out of it" AND her school had had relaxed lunch hours and a concentration on the true wellbeing of all of their pupils (they were pretty good really and a lot better than her sister's school but all are under pressure to achieve exam results rather than rounded individuals), AND society hadn't been so fixed on thinness just maybe I wouldn't be here cluttering up your blog with my musings. Sure I played my part, but, terrified about EDs from my childhood, it certainly wasn't a lack of vigilence on my part, or knowledge and education given to my daughter - like yours Harriet mine was well educated but that didn't prevent it.

Harriet Brown said...

I love your musings, Marcella, and everyone's. I wish we were all sitting around the kitchen table having this conversation--with a bowl of spaghetti in the middle of the table and gold forks everywhere!

mary said...

Well said Harriet!
Let's eat and solve world problems together. Perhaps for now the blog will be our table.

Anonymous said...

Harriet- I love your blog it is so accurate about everything associated with eating disorders. I was curious. Why do you believe there was a clue to your daughter's future eating disorder when she wrote the paper in 6th grade? Is it because she is a perfectionist and the paper had to be perfect? I really wonder if the "perfectionist" tag on eating disorders is sometimes overstated. To me it seems there are plenty of kids, my daughter included, who don't fit that mold. I think the genetic blueprint must cut a wider swath. If we are looking for prevention we have to be vigilant about all types.

Harriet Brown said...

Hello Anonymous, and welcome.

I wasn't thinking of perfectionism when I wrote that about my daughter, actually, though it does apply to her and always has. I was thinking instead that her interest in the topic could have been a tipoff, or certainly a flag to keep paying attention to her relationship with eating. Of course lots of kids might write papers like that without ever developing anorexia, just as lots of kids diet without becoming diagnosably e.d. But still . . .

I agree that the genetic blueprint must be wider than we think. Remember the beginning of the AIDS epidemic, when everyone thought (for good reason at the time) that it affected primarily gay men, and that there must be some physiological/genetic reason? Maybe there's an analogy here: the anorexics who tend toward perfectionism are the ones who succeed at anorexia, so they become the sickest, and become the ones who define the population.

Interesting thoughts for sure.