Saturday, February 16, 2008

Not Otherwise Specified

I disovered Harriet Brown because she writes in moving installments about her elder daughter’s struggles with anorexia for The New York Times science section. She is straightforward about the views she promotes in her print work and on her blog, Feed Me – anti-fat discrimination and pro-Maudsley method, an anorexia treatment that hinges on parental involvement.

Whether or not one agrees with its biases, Feed Me is a great resource for keeping abreast of food and weight issues from legal, cultural, academic, and media angles. (And if Harriet’s views bug you, she’s open to intelligent debate. I once e-mailed to thank her for her eloquent Times pieces, adding that I often disagree with her opinions – I’m not such a Maudsley fan. She replied, “I'm always happy to hear from people who *don't* agree with me. From dialogue comes knowledge. At least that's the idea.”)

Brown, based in Wisconsin, wrote a recent post about ED-NOS. I recommend reading both the post and the smart comments it elicited.

ED-NOS – “eating disorder not otherwise specified” – is the DSM-IV’s catchall diagnosis for anyone that does not fit all clinical requirements for diagnoses of anorexia, bulimia, or binge eating disorder. If you binge and purge, but less than twice a week for three straight months then you’re not bulimic, you’re NOS. If you consider bubble tea an intimidating meal and nap daily because your body lacks fuel to stay awake but somehow continue menstruating, you’re NOS. There are people who restrict calories but stay in a normal BMI range and others who purge without binging first. All these behaviors are physically and psychologically excruciating.

I was the bubble tea example some three-plus years ago. Bubble tea was a reasonable – nay, grossly large – food choice. Tapioca balls, cream, caffeine … meal! I was shouldering Proust and Eliot for a modernism course at the time too. I was pale, withdrawn, dizzy, drained, losing hair, and perpetually panicked. (I got an A in the class.) But Auntie Flo visited on schedule, so I was not anorexic. For a cohort that never feels good enough, it’s not uncommon to feel frustrated at not being “anorexic enough” to merit a legitimate diagnosis.

But an even more insidious effect of shoddy diagnostic criteria is it can deny recovering patients treatment at the tipping point of a struggle. The moment an anorexic regains some weight, she becomes NOS. This translates into fewer covered treatment options and a widespread lack of understanding outside the community educated about EDs.

But as Brown notes in her post's comments, folks in recovery can be eating normal amounts for months and still FEEL as anorexic as ever. Normal nutrition starts out feeling anomalous, and the body acts accordingly, slowly readjusting. It took me at least six months of deliberate effort to eat substantial meals and snacks five times a day. It was exhausting, especially when I had to pretend all was OK in front of friends and family. Only when the body feels more secure will the brain tentatively follow. It took over another half year before I wasn’t feeling trapped in a fat suit all the time. When I’m stressed, I still do.

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