Disordered eating and eating disorders

The Twitter-sphere has been discussing the difference between disordered eating and eating disorders (specifically EDNOS) today. I haven't responded, in part because I like to formulate a complete answer than spewing something half-baked, and also because I can't explain myself in 140 characters or less! But the more I think about it, the more I realize that I don't necessarily have all the answers, but that these are answers that are worth having.

To start forming these answers, we first need to define "disordered eating" and EDNOS. A Newsweek article on EDNOS, which prompted this discussion in the first place, had this quote from Susan Ice*, Medical Director at the Renfrew Center, about EDNOS:

"EDNOS is a hodgepodge of things that don’t necessarily belong together, except that they don’t belong anywhere else."

The Newsweek article pointed out that there are plenty of insurance issues regarding EDNOS; whereas insurance companies may grudgingly cover anorexia and bulimia treatment (if you're lucky), they frequently will not cover treatment for EDNOS. I don't necessarily know their logic--nor even if they have any--but this strikes me as more of an insurance issue than an EDNOS issue.

Problems with EDNOS remain, however. It's the most common ED diagnosis, yet differentiating EDNOS from full-syndrome anorexia, bulimia, and binge eating disorder doesn't always yield significant results. People with EDNOS are typically just as ill and just as impaired as those with other eating disorders. That so many people are diagnosed with something titled "not otherwise specified" is troubling, and indicates that we really don't know a whole lot about eating disorders. Leading ED researchers have noted that the DSM criteria for eating disorders are in much need of revision. I don't advocate getting rid of the category entirely, because it is a way to account for the continuing evolution of both eating disorders and our understanding of them. That being said, we need to get a heck of a lot more clear on what's going on with eating disorders.

Then we have the issue of disordered eating. I was surprised at how difficult it was to actually find a definition of disordered eating. The most amusing was "eating that is irregular or disordered." Just file under "circular reasoning" and then hit me with the Duh Truck, why don't you. Wikipedia equated "disordered eating" with EDNOS, though I wouldn't call the two issues the same. The best definition I found, and one which involves way too much hand waving for my nit-picky scientific mind, was from Eating Disorder Expert:

"“Disordered eating” is a term used to describe eating habits or patterns that are irregular. Many different types of disordered eating habits exist, but for the most part these habits do not add up to a diagnosis of an eating disorder...Excluding whole food groups (for example, all fats or all carbohydrates), eating only at particular times of the day, eating only specific foods, eating only foods of a specific colour, eating only foods of a specific texture, not eating certain foods together in a sitting and not eating specific foods from the same plate can all be types of disordered eating."

I would also place dieting and body image obsession into this category, which basically includes 95% of the American public. Research from UNC-Chapel Hill found that three out of four women in the US have disordered eating attitudes. It's significant. It's severe. It sucks.

It's not an eating disorder.

Disordered eating can look like an eating disorder, especially when the eating disorder is just forming. Similarly, a full-blown alcoholic may start as a binge drinker at parties on the weekend. Neither disordered eating or binge drinking is healthy or something I would advocate. But most of those with disordered eating or binge drinking do not go on to develop eating disorders or alcoholism. This isn't to say that they aren't deserving of help and wouldn't benefit from therapy or taking a long, hard look at their behaviors. Far from it. But I have many behaviors that could stand improvement that are still far from pathological.

Right now, we don't have the diagnostic accuracy to be able to separate people into two groups: those with eating disorders and those with disordered eating. Nor do we know how to separate those with disordered eating and those without any eating issues. Disordered eating hasn't been clinically defined; for that matter, neither really has EDNOS. As much as I hate the "less than 85% ideal body weight" and bingeing and purging twice a week for three months criteria of the DSM and think they're crap, it's a start. Although I can personally define disordered eating as well as Justice Homer Stewart can define obscenity (i.e., "I'll know it when I see it."), this isn't very useful to anyone but, you know, me.

I can't get more specific than this; we don't have the definitions or the research. What I can say is this:

I see eating disorders as primarily biological issues. I see disordered eating as primarily a cultural issue.

"But Carrie," you say, "what about Anne Becker's research on the island of Fiji?" Becker, an anthropologist, found that the arrival of American TV on Fiji in the mid-90s resulted in an increase in disordered eating attitudes, dieting and self-induced vomiting. After three years of TV viewing, approximately 12% of Fijian adolescent girls admitted to self-induced vomiting, compared to 0% before the arrival of American TV. This is clearly problematic, and I regret the introduction of TV and the loss of innocence on Fiji.

Yet the study did not indicate the frequency of self-induced vomiting (not that any is good, but again, I think of the relationship between binge drinking and alcoholism. It can look the same, but it's not), nor do people comment on the rate of disordered eating attitudes before the arrival of American TV. Just over 12% of Fijian girls had a high score on the Eating Attitudes Test before TV came to the island; after three years, that number was 30%- a significant increase. The number of girls with high levels of disordered eating more than doubled in three years- it's sad and it's serious and it's a big, big problem. But that means that even without American TV and models and ads, about one in eight Fijian adolescent girls had high levels of disordered eating. Could these be the beginnings of eating disorders? Perhaps. The test doesn't distinguish between disordered eating and eating disorder. But neither were any full-syndrome eating disorders diagnosed in the first three years following the arrival of American TV.

Of course, I would never claim that anyone could split nature and nurture. Both are important. But I see dieting as a cultural phenomenon, one that is rapidly sweeping around the world. Eating disorders exist in all cultures, races, genders, socioeconomic classes, and time periods. Certainly many eating disorders start as disordered eating, but then they progress into something much more sinister and something the sufferer has much less choice over.

Both issues are important, but they are rather different. Promoting better body image and self-esteem will hopefully decrease the amount of disordered eating, and maybe result in fewer eating disorders being triggered by malnutrition in the form of dieting or "healthy eating." I'm not sure it will have much effect on eating disorders. I wasn't thinking about supermodels when I first thought about eating "better" and exercising more. I didn't obsess about freakishly skinny women until after I had started losing weight.

There is a fundamental difference between disordered eating and an eating disorder. I might not always be able to tell you exactly what it is, but I'll know it when I see it.

*Full disclosure: she was my MD when I was at Renfrew in 2001, and her last name kind of fits her. She was quite competent, but she also terrified me. Then again, she was also the one increasing my meal plan practically twice daily.

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15 comments:

Lily Jane said...

Hey hey, I did a vlog about this awhile back. :D How coincidental. I was just tired of people going "well, how is disordered eating any different from eating disorders?" :\

Lily Jane said...

Oh, and LOL! I totally saw that exact "DSM-IV needs revision" article and posted it on Twitter, too. Hahaha. ;P Rock it out.

Lily Jane said...

OMG, I'm sorry for all these ridiculous comments, but I found the vlog link: http://www.youtube.com/watch?v=Lg5IeFGi5to

Katie said...

"People with EDNOS are typically just as ill and just as impaired as those with other eating disorders."

Thank you for that :) I had EDNOS for a full decade before it developed into anorexia. When I was a teenager it was seen as just another in a ream of self destructive behaviours and as I pretty much just bounced up and down the same 10lbs it wasn't addressed on its own, just as another thing I was doing to 'cope with my problems'. Despite all the progress I made psychologically the eating disorder continued to follow me until I was seriously ill at the beginning of this year and finally had to take it and myself seriously.

I think what a lot of people forget is that one of the most common causes of death from eating disorders is suicide. You don't have to be emaciated or purging every five minutes for that to happen. In that context, all eating disorders need to be thought of as dangerous and necessitating proper treatment.

Eating Alone said...

Well Katie said it better than me. I just saw that you were calling me ill and impaired. I know that wasn't what you were doing, but it's hard to take the EDNOS lable serious. At least it is for me. I'd never heard of it when I was diagnosed with it, and ED surly doesn't want it. I love that you put it out there so bluntly. I'm working on "owning" my ED right now but it's just not co-operating.

M.B. said...

I just returned from the NEDA conference in Minneapolis and much of the program was dedicated to preventing disordered eating. This is an important topic but this is not NDEA is it? My concern is that if the professionals aren’t differentiating DE’s and ED’s how will patients/families/insurance companies. I hope professionals can begin to look at ED’S as a neuro-biological illness along a spectrum which includes AN, BN, and clusters of combinations of these symptoms thus eliminating the basket term of EDNOS. In addition, the professionals need to separate the neuro-biological illness from the cultural/situational issues that create disordered eating. If disordered eating is addressed, I hope they will begin to include sleep deprivation, and social/academic pressures etc. in their prevention training.
When you have experienced an ED personally or with a family member, you do KNOW IT WHEN YOU SEE IT! (I agree with your analogy to binge drinking/alcoholism.) I encourage professionals to look for underlying factors in personal history (phobias/anxiety/depression etc.) and in family history (phobias/anxiety/depression/OCD/alcoholism etc.) to begin to explore the possibility of a neuro-biological basis for the presenting symptoms. We have the technology to diagnose these brain disorders. However, the cost precludes the use of these tests for so many sufferers with eating issues. If we could narrow the field by excluding DE’S maybe we could improve the diagnosis and treatment for those with ED’s.

CC said...

Thanks for this post. I probably fall into the EDNOS/disordered eating category myself but I change my mind about it from one day to the next. Sometimes I feel like just an obsessive dieter and other times I am acutely aware that my attitudes towards food and weight are totally not normal. I really don't know what to make of myself and so I appreciate any dialogue on the subject.

The Knitting Professor said...

I'm EDNOS, and as someone who works on language, it was very hard for me to have a diagnosis that was basically an un-name. Like Katie and Eating Alone, it made it harder for me to believe I actually had an eating disorder: "So I have amenhorrea? So what? That doesn't make me anorexic. The doctor even said so. EDNOS is just a term they're using to get the insurance company to cover my therapy." Going through treatment at the Renfrew Center set me straight on that because I so clearly belonged there, but at first I felt convinced that it was wrong to put me with anorexics and bulimics, because they were really sick, and I was just faking it, if that makes any sense. But the more we talked to each other, the more I realized how much we had in common. Many of them were just as worried that they weren't sick enough to deserve treatment as well, and I think we learned a lot from each other.

I still find it hard to articulate the difference between my relationship to food and the disordered eating that I witness in others. It's possible to measure things like weight and frequency of purging, but harder to quantify emotional distress, I suppose.

raspberryclover said...

Honestly, I'm still most dismayed about the fact that my binge eating disorder continues to be called 'ED NOS' instead of being a "real" diagnosis. It's real! Very real.

(Ranting aside, I've enjoyed reading the rest of this discussion here, too.)

Anonymous said...

"People with EDNOS are typically just as ill and just as impaired as those with other eating disorders"

That may be true to an extent but most people that I know do not believe it. even medical professionals.

and how do you determine who has a biological based ED and who has a socially based one?
You can't just do a blood test. Right? Can you?

On the other hand, determining who is "really" sick and who is just "influenced by society" will play right into the E.D. competition circus.

I personally did not believe i was ever AN but i was hospitalized for it.

Years later, i told my MD that i had no idea why, at 28, i didn't get periods but every couple of months or why I had low blood pressure. He offered birth control pills to regulate my cycle. i refused. Guess he didnt "know it when he saw it."

Pretty sure that unless I am completely covered with fur with no one will notice or care. And that is fine with me.

Carrie Arnold said...

Anon,

Many professionals don't recognize eating disorders- it's very true. It's not just EDNOS they don't recognize; many don't recognize any eating disorders. I was told at 20 that I was "a little old" to be anorexic. This, to me, is more of a problem with idiot doctors and less of a problem with EDNOS.

I don't know how to determine the difference between someone who has disordered eating and an eating disorder. I said as much in the post, and we simply don't have the tools to do this. Just like it's hard to look at a crowd of binge drinkers and determine who might be a nascent alcoholic and who might be a frat boy with little judgement. That's why I want to see more research done on the genetics. It's also why I hate the fact that disordered eating has become so normalized. It IS hard to tell which is which, and I don't know that we'll ever be able to say with 100% certainty.

Anonymous said...

http://www.ncbi.nlm.nih.gov/pubmed/19544557?
Just out on Pub Med from Stanford.I'm sure the full study report would be interesting.
My daughter never fit the full AN criteria as she only missed one period.
I hope for the sake of Ins and Dr's out there the DSM-V clarifies all ED's as serious deserving of serious, rapid response, evidence based treatment.
M

Anonymous said...

The best YouTube video I have seen that attempts to differentiate eating disorders and disordered eating is by 'misstiggykins'. She suggests that an eating disorder is when a person gets stuck in a pattern of dangerous behaviors around eating/purging/over-exercising etc. The problem arises when the person feels unable to escape from that behavior pattern.

Edward said...

Some anorexia bulimia treatment may be provided at home, while more severe versions of the disorder need the help of expertise of medical professionals.

Alice said...

Thank you for aknowledging EDNOS.
I always feel like i'm not "sick enough".

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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