"Eating disorder, not otherwise specified."
First of all, it's five words long. Not quite as memorable as its one-worded relatives Anorexia and Bulimia.
Second, none of the five words are specific or descriptive, except to describe something that's unspecific.
Third, eating disorders have only become common knowledge within the past thirty years or so (or so I hear), and even now many people don't know about disordered eating besides anorexia or bulimia - to most people, if you have an eating disorder, it's either one or the other.
Fourth, ED-NOS is somewhat of a catch-all diagnosis for people whose disorders don't seem to fit into the specific definitions of other disorders. That means every case of ED-NOS will be a bit different, and seeing "ED-NOS" on a medical record doesn't give nearly as much information as seeing "bulimia" would.
ED-NOS just isn't something people get yet.
A disorder that can't be described more specifically than simply 'a disorder' isn't a concept easily understood. The thing that characterizes an ED-NOS is that it doesn't meet clinical requirements (e.g. body weight, duration of behavior) to be diagnosed more specifically as anorexia/bulimia/binge-eating/compulsive-overeating.
As I see it, there are two areas of ED-NOS. The first would be used to describe someone who is in the beginnings of an eating disorder, e.g. someone who has been restricting severly and obsessing but hasn't lost enough weight or been restricting for long enough to be diagnosed as a full-on anoretic. The second would be used to describe someone who may have fully developed disordered eating, but rather than fully developing one particular behavior, goes through phases of distinctly characterized behaviors, e.g. three weeks (or three days, or one week, or one month) of severe restriction followed by two weeks of binging and purging followed by a week of restriction and another three weeks of binging without purging, and so on...
The definition of ED-NOS as a disorder that doesn't meet requirements to be something more specific also implies that it's a less serious or extreme disorder. The problem with that is that ED-NOS actually describes a disorder that reaches all behavioral extremes - each phase a person with an ED-NOS goes through may reach the same mental and behavioral extremities as other disorders. The difference between ED-NOS's extremities and other EDs' are in the duration of behavior and the behavior's physical impact - one month of anorexic behavior may not bring a person's weight down far enough to be considered anorexic by a clinician.
The problem of ED-NOS not being understood or taken as a serious problem isn't just present with regular people - I don't blame them for not knowing about eating disorders any more than I'd blame myself for being ignorant of mental disorders or diseases. More importantly, though, is that the brushing-off of ED-NOS is present in the medical field. It's terrible that people's lives can be torn up by disordered eating, but when they seek professional help a doctor might not understand what their problem is, might not weigh it as heavily as something that is more physically evident, and ultimately may not offer the help that someone needs.
Well. This isn't an attack on all professionals. There certainly are knowledgeable specialists, and they are growing in numbers as these issues become more common.
And I don't want medical help. I don't personally want to tell clinicians about my disorder. But there have been times when I thought that would help, and it didn't. And there are plenty of people out there with problems and who could be helped by professionals if their problem was properly understood. My hope is that the number of knowledgeable professionals does keep growing, and that their knowledge grows as well. In the meantime we'll keep working on it ourselves, which I think we've been doing pretty well at so far... :)
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