What Do You Mean My Eating Disorder Is 'Not Otherwise Specified?'
As I mentioned in my post during National Eating Disorders Awareness Week, over half of eating disorders in the United States are diagnosed as "Eating Disorder - Not Otherwise Specified" or ED-NOS. It's a tricky thing to pin down, ED-NOS is. The manifestation of this eating disorder is as varied as its many sufferers and carries a stigma and set of problems all its own.
So if I'm diagnosed with ED-NOS - what the heck does that even mean? What does it mean for my recovery? What does it mean for my access to eating disorder treatment?
Definition of ED-NOS
First, I feel it necessary to describe ED-NOS from the sufferer's perspective - not so much what it looks like because that is different for everyone - but what do we think and feel about our diagnosis? (For the record, I have been diagnosed with all three eating disorders at some point in treatment - anorexia, bulimia, and ed-nos.) While it's true that with almost any eating disorder, you're likely to think that you're not "sick enough" for treatment, this is exacerbated when you're given a diagnosis that says...what?
Basically - that you're not "sick enough." Your BMI is too high. You still get your period. You don't binge and purge often enough. You binge but don't purge. You purge but don't binge. You regularly chew and spit your food. 
You don't have a real eating disorder - if you had a real eating disorder, you would be better at your disorder and have a "real" diagnosis. Anorexia is the best, but bulimia is okay, too. But "not otherwise specified"? Ha! Get over yourself, kid - that's not a real thing. (Many thanks to my eating disorder for writing this paragraph for me!)
The reality is this: Eating Disorder - Not Otherwise Specified is a real and very serious eating disorder. If this is your diagnosis and your eating disorder is trying to convince you that you don't "deserve" or "need" treatment, that thought process is WRONG. And very, very dangerous. Some studies have shown that the mortality rate for ED-NOS is higher than that for anorexia or bulimia.
The Good, The Bad of an ED-NOS Diagnosis
The Bad: Insurance, which isn't necessarily so keen to cover eating disorders in the first place, is more likely to give you a difficult time with a diagnosis of ED-NOS. If they will cover any treatment at all, it's likely to be less intensive and for a shorter duration. One thing that can help is having a doctor or therapist who is on your side. My own therapist has been checking "anorexia nervosa" on my insurance forms for the past few months, despite the fact that I do not currently meet the full criteria. In reality, what does it matter if your BMI is 17.6 or 17.5? Or if you're only bingeing and purging, on average, once a week - not twice? My best advice here is to get someone on your side who is willing to check the right box even if the DSM-IV-TR says you're ED-NOS.
The Good: A diagnosis of ED-NOS is pretty common at the beginning of a person's transition from "disordered eating" to "eating disorder." This means, in essence, that a diagnosis of ED-NOS might mean you've caught it earlier rather than later - before the restricting or bingeing or purging get completely out of control. Early intervention is crucial in the treatment of eating disorders. Instead of letting your eating disorder tell you that you aren't "sick enough," reframe it: "I am fighting my eating disorder early and have a better chance at a full recovery because of it." More good news for those of you struggling with binge eating disorder is that when the new DSM-V comes out later this year, BED will have its own diagnostic code and will no longer be shuttled under the umbrella of ED-NOS.
What have your experiences been as relates to your diagnosis? Has it affected the treatment you received? The way you or loved ones perceived your disorder?
APA Reference
Hudgens, J.
(2013, March 21). What Do You Mean My Eating Disorder Is 'Not Otherwise Specified?', HealthyPlace. Retrieved
on 2024, December 25 from https://www.healthyplace.com/blogs/survivinged/2013/03/what-do-you-mean-my-eating-disorder-is-not-otherwise-specified
Author: Jessica Hudgens
I know this is a super old post, but I thought I would give my two cents anyways. I have Purging Disorder. It's a type of eating disorder that falls under EDNOS. I basically never hear about it, and I've never met anyone who has it, but I know I can't be the only one. Basically, purging is my drug. I purge without binging, I purge (via induced vomiting) constantly (or, I did, before I was in recovery). When you purge, it lowers your amygdala, it releases serotonin and endorphins, and essentially creates the sensation of taking a drug like cocaine in your brain. It's very serious, and I wish that there was more information about it out there. It also makes me wonder about other EDNOS disorders that should be getting more attention and more research.
I am so glad to have found this post. I never heard of ED-NOS. I am only now admitting to myself that I have a problem. I've been doing some reading and I know I'm not anorexic, but neither am I exactly bulimic. This is me.
Geena,
I'm glad you're realizing what a problem ED-NOS can be. It can often be just as deadly as the rest of the eating disorders (which already have the highest mortality rates among mental illnesses). Keep checking out the blogs and the ED community here on HealthyPlace for more information. Don't hesitate to comment on here or find me on social media if you have a question!
Best of luck,
Jess
great post! 100% captures the thinking of a person with ANY kind of ED....
I really wanted the EDNOS diagnosis. I hated anorexia. Mostly because people thought I was anorexic, and used it as an insult long before I ever even had an eating disorder.
I wasn't dealing with insurance, so I didn't need a certain diagnosis to get help. I just wish everyone could get the help they needed without trying to prove they are sick enough.
Best description of ED-NOS I've seen. Thanks Jess, for putting it in words. :-)
Some of the criteria for anorexia and bulimia nervosa are so arbitrary to begin with... It seems as though they started out (in terms of medical perception) as diagnostic guidelines, then morphed into mandatory parameters, each of which must be met before an individual can be officially diagnosed. (I blame the insurance companies for this shift.) I've always had 'anorexia nervosa' on my paperwork, but technically I've almost never been 'really' anorexic -- even at clinically emaciated weights, I continue to menstruate regularly, sans birth control.
I think there should definitely be certain criteria for anorexia and bulimia, but they should be more cognitive or behavioural than physical. (This is dicey as well, because obviously everyone's disorder manifests itself slightly differently in terms of thoughts and rituals.) Other psychiatric/brain disorders are diagnosed this way; why not anorexia and bulimia? It might also be beneficial not to need to meet ALL the criteria for a particular diagnosis. (Again, I could be mistaken, but I think this is the case for other neuropsychiatric diseases.) Just a few of my far too many thoughts.
AJ -
You are absolutely correct in saying that in other neuropsychiatric diseases have lists of criteria where you only have to meet a certain percentage of them (e.g., depression, schizophrenia, etc.). Hopefully with newer research on the neuropsychiatric basis for eating disorders (they're not just "behavioural" disorders) as well as the new DSM V (which is rumoured to loosen some of the AN/BN criteria), we'll see more accurate diagnoses and better insurance coverage.
Thank you for your thoughts! They were great!
Jess
I couldn't agree more with what you said. When I was admitted my BMI was 18.6, met criteria for anorexia except for the weight. I've never been a big binger, but a big purger...so bulimia was out too! I've had an ED for two decades and still struggle to convince myself that I have a problem. So when this last time I received the ED NOS diagnosis, you can imagine why I felt slapped in the face. I nearly quit therapy because "I didn't have a problem!" I wasn't good enough to have anorexia, or bulimia. Since then I've had to prove to myself I have one of them so I've increased my behaviors in one direction simply to say I have a problem.... stupid yes, and now I'm in a cycle that I'm trying to get out of... all because of NOS!!!! :'-(
Alison,
I'm certainly familiar with that cycle! Another friend of mine has described the EDNOS diagnosis exactly as you have: a "slap in the face." It's hard enough to face up to our eating disorders without being told that we don't exactly fit in to having an eating disorder. I definitely don't condone the increase in symptoms in order to get one of the more "official" diagnoses though. You DO have a problem, regardless of your DSM-IV-TR diagnosis.
Hang in there!
Jess
Jess!!
Has BED been diagnosed as an official eating disorder yet, along with bulimia, anorexia and EDNOS? As I was reading this I thought about how those sufferers would deal with a lot of these similar problems.
And it's sick how there really IS a hierarchy, seen both in insurance and in our own personal insecurities: anorexia, bulimia, ednos, then binge eating. I'd hate myself for never having a BMI low enough, I'd get defensive of the seriousness of the eating disorder and then my head turns it into this messed up competition of "who is sickest at the treatment program".
Wouldn't it be nice if they just had one general diagnosis of EATING DISORDER?
Katie -
In the current Diagnostic and Statistical Manual (DSM-IV-TR) used to determine diagnoses, BED is under the umbrella of EDNOS. So for the moment, BED sufferers are diagnosed with EDNOS and subject to the same sorts of challenges related to that diagnosis. However, when the new DSM V is published this spring (projected publication of May 2013), BED will be listed as a separate disorder.
As for having just one diagnosis of "eating disorder" - I don't think that will necessarily aid things at all. The divisions of the certain types of eating disorders in the DSM are pretty crucial to understanding the types of interventions one needs and make it easier for a treatment team to work together, even without sitting in the same room. That said, what would be really nice would be if insurances would understand that any diagnosis containing the term "eating disorder" is serious and would treat it as such!
Thanks for your comment!
Jess
Such a great post. My doctor has told me I am EDNOS for years. Basically, she tells me, I have an unhealthy relationship with food...she then tries to explain the four food groups and calories as if I do not know the calories in everything I put in my mouth!
Thanks for talking about this.
-Natalie
I remember being given the diagnosis ED-NOS, and feeling less than. I felt like I didn't really fit in because I wasn't really one or the other, but a mixture of them all. I remember thinking, "I can't even get the illness correct to get a proper diagnosis."
Anon,
Thanks for sharing your experience! I think that is a very common thought for those of us who have been diagnosed ED-NOS - especially if you go into any type of treatment where there almost seems to be a "hierarchy" of eating disorders and constant competition to see who is "sickest." Even in the eating disorder community, I think sufferers and clinicians are unaware of the severity of ED-NOS and how it can be just as devastating as anorexia or bulimia.
Jess
As always this article is right on point. I have always struggled with this diagnosis. My BMI when I was 13 years old stated that I was smack dab in the middle of the "healthy" weight range, not underweight, still got my period. So I wasn't anorexic. I was purging after AT LEAST one meal a day, everyday, but I never binged. So I wasn't bulimic. My family members have even said I looked "too thin", yet I hadn't "earned" the right to be diagnosed with a "real" eating disorder. And it was extremely hard to seek treatment with the ED-NOS diagnosis because, just like you said, if I'm not sick enough to have a real diagnosis, why do I need real treatment? To be completely honest, after I have gained the weight, and am eating (mostly) properly, I still struggle with this logic. I still feel like I was never "good enough" at my eating disorder. But it's something I just have to get passed and remind myself is a lie from ED. Great post Jess, this really spoke to me!
Anon,
I'm glad you could relate to this article -- well, not "glad," but I think you know what I mean! I was overweight when I began my descent into anorexia a few years ago and so even though I had lost a significant percentage of body weight, I was considered ED-NOS for a long time because, like you, my weight was still within the "normal" range. I'm glad you sought treatment despite the whisper in your ear from the ED telling you that you didn't have a "real" eating disorder. That was very brave of you!
It's hard to accept a diagnosis of ED-NOS when the eating disorder (and sometimes the greater culture) is telling you that you don't have a problem. Like you said - it's a lie from the ED. Keep reminding yourself of that and keep fighting!
Thanks for your comment,
Jess