Not Otherwise Specified
Content warning: eating disorders. Resources included at the bottom of the post.
Today is the last day of National Eating Disorders Awareness Week in the United States, and I have yet to write about it. Having just moved to Spain for the near future, I've had a few other things on my mind, and didn't even realize that it's NEDA Week until it was already halfway over.
The theme for this year's NEDA Week is "Let's Get Real," and the organization's website explains it as an attempt to "expand the conversation and highlight stories we don't often hear." An admirable goal, to be sure, since the conversation around eating disorders in the United States is littered with myths, damaging stereotypes, and downright refusal to acknowledge the full spectrum of everyone affected by eating disorders.
As far as eating disorder stereotypes go, I fit the archetype pretty much to a T. I am:
- A woman
- Straight (mostly)
In other words, I am the "perfect" eating disorder victim, according to society's ideas about how we are supposed to look/be. Anyone who doesn't look like me - i.e., anyone who isn't a young/thin/white/straight woman - tends to have their story diminished, dismissed, or mocked altogether. In other words, as an eating disorder survivor, I lucked out. Due to the many privileged identities I hold, there were few obstacles to my receiving competent care and treatment. Eating disorder survivors like me have a duty that comes with this privilege, which is to amplify the voices of those who don't fit society's dangerously narrow mold.
I recognize that I can do a better job of that, and I am recommitting to engaging more with the recovery community in order to make the space more inclusive to experiences that don't match my own.
The purpose of this post, however, is to share an aspect of my story that bears relevance to NEDA's goal of expanding the conversation. And that is my diagnosis.
When you think about eating disorders, what are the first words that come to mind? I'm guessing at least one or two of the following: anorexia, bulimia, binge, starve, purge. Though there are many different kinds of eating disorders, we tend to only hear about anorexia and bulimia. Similarly to people who don't fit stereotypes around identity, survivors of other eating disorders often struggle to get the recognition and treatment they need.
In September 2011, I was diagnosed with Eating Disorder Not Otherwise Specified (EDNOS), which is now known as Other Specified Feeding or Eating Disorder (OSFED) in the DSM. I had never heard of EDNOS until it became a part of my medical records.
I knew I had a problem; at the urging of a then-acquaintance now-friend, I went to my university's health center of my own accord. I wasn't bulimic, so I figured I would be diagnosed with anorexia. After I described my thoughts and behavior to the counselor and she collected data about my body, though, EDNOS was the diagnosis I got. As twisted as it sounds, I was disappointed. It's not that I wanted to have anorexia, but rather that my diagnosis was one more confirmation that I wasn't good enough. I wasn't even sick enough to merit a "real" diagnosis, I thought, and so I must not be as deserving of treatment as other people.
This line of thinking, of course, is completely and utterly wrong. First of all, there's no such thing as not being ill enough to receive treatment; anyone struggling with any degree of mental illness deserves care. In fact, I think we'd be much healthier as a society if we learned to recognize and treat disordered eating behavior (like chronic dieting) before it turns into diagnosable eating disorder. Furthermore, research on EDNOS/OSFED shows that it is just as severe as other eating disorders for a number of reasons, most notably that the mortality rate for EDNOS/OSFED matches that of anorexia and bulimia. It took me a long time, a lot of research, and a lot of therapy to recognize this fact and consider myself worthy of the treatment I needed.
The reason that I am writing about this is that many people, like my nineteen-year-old self, don't even know what EDNOS/OSFED is, let alone recognize it as a serious and life-threatening disease. In fact, insurance companies used to refuse to pay for its treatment, since they perceived the illness to be insufficiently severe to merit coverage. In short, EDNOS/OSFED was developed to encompass eating disorders that don't meet the diagnostic criteria of other EDs.
In my case, I met a number of the diagnostic requirements for anorexia, but not all of them. I won't go into the criteria in detail so as to avoid triggering any readers, but the gist is that my behaviors and physical data checked most (but not all) of the boxes. This is the important takeaway: I was extremely ill, but I hid it well enough so as to avoid too much suspicion from family and friends.
People saw that I was sick, but they also saw me eat, so they didn't comment. My parents looked up anorexia in the DSM and saw that I didn't meet all the criteria, so they didn't push me to get treatment. Friends worried, but I acted just "normal" enough for them to be afraid to say anything.
That's the particular danger of EDNOS/OSFED: the disease doesn't fit the archetypal eating disorder, so it can be tougher to detect.
The only reason I got treatment when I did is because an acquaintance, someone I'd barely known three days, recognized what was going on and talked to me. I remember that her voice was shaking; she was so nervous to talk to me. But it was that conversation that may have saved my life. Up until then, I'd been steadily losing weight, eating less and less and exercising more and more, and I was starting to have dizzy spells daily. At the rate I was going, I probably would have started passing out within the month. I could have easily ended up in the hospital or suffered long-term damages to my health had I waited any longer. But it took someone saying something to me in order for me to finally take the first step towards treatment.
So please, if you're worried about someone, say something. You could save their life.
NEDA Helpline: 1-800-931-2237
BOOKS THAT HELPED ME