Thursday, May 07, 2009
What will it take?
I write this post in sorrow and distress, after reading this story about a 57-year-old woman in the U.K. who died after 40 years of being anorexic.
It's a tragedy when anyone dies from an eating disorder, especially someone like this woman who, according to the article, died friendless, without family, alone in the world.
But the overarching tragedy here is the profound misunderstanding of anorexia expressed by the medical establishment here. While her doctor obviously cared enough about her to be checking up on her at home (he's the one who spotted her lying on the floor), he clearly doesn't get some of the most basic facts about anorexia.
Here's a quote from the story:
Discussions of her case with psychiatrists and other experts in the past had all concluded that any effort to force her to eat would only make matters worse.
"I believe that she understood the nature of her illness and its perils," Dr Knight told the inquest. "She seemed to have a very firm understanding of her condition. The anorexia was a long-term chronic condition which would not be significantly modified – she was set in her ways."
This makes me want to cry. Then scream. Then change something.
"Any effort to force her to eat would only make matters worse." Let's say a person was delusional about the act of breathing. Breathing makes you sick, they say, and they spend as much time as possible holding their breath. They have to breathe sometimes, but they do it as little as possible. Now imagine a doctor saying "Any effort to force her to breathe would only make matters worse."
I didn't think so.
When someone has been chronically ill with anorexia, their delusions are, as the doctor goes on to say, "set in their ways." But that doesn't make those delusions true. Efforts to force this poor woman to eat would have caused enormous upheaval and distress for her and likely everyone around her. That's the nature of the illness, especially when it's become chronic. (Which is why I'm a big proponent of the Maudsley approach; if you can cure anorexia while someone is still young, they often don't go on to become chronically ill. And that's why it makes me so angry when doctors still take this line with teens who are sick; don't they understand what's at stake? But I digress.)
One of the most well respected ED docs/researchers in the world, Dan le Grange, once told me that there is something about anorexia that seems to affect the people around the anorexic as well as the ill person herself. This story is a heart-breakingly good example of that kind of distorted thinking legitimized. Why is it OK for someone under a delusion like anorexia to starve herself to death? Could it be because of our messed-up ideas about body image and weight?
Here's a later quote from the doctor: "Her body image was such that she thought that she looked the right way even though to everybody else she was very, very thin."
One of the hallmarks of anorexia is an inability to see your physical body realistically. People with anorexia literally look at themselves and see oozing fat even when they're emaciated. This is one of the profound neurological distortions that we know is part of the disease even if we can't understand it yet.
So yes, this woman "liked" the way she looked. But she was in no position to "like" anything about her body, because her self perceptions were profoundly and utterly distorted.
So here's what I want you to take away from today's post:
1. People with anorexia cannot choose to get well. They need at the very least support and help from others. Often they need others to begin the recovery process for them, and stick with it for a long time, until their thinking and ideation is restored to normal.
2. There's nothing sacred about anorexia. It's a terrible, tragic illness. There is nothing glamorous about it.
3. As a society we have a responsibility to help people with this disease recover. Which doesn't include letting someone starve herself for 40 years, only to die, alone and friendless and emaciated, on her bedroom floor.
To this woman's doctor in particular I say: You meant well but you failed. And guess what? Good intentions don't count for shit. What will you do differently with your next anorexic patient?
To the rest of you, I ask that you think about this woman the next time you talk to a friend with anorexia or bulimia. And see if there's anything at all you can do to help your friend recover.