The problem with “almost anorexia”

Hang on to your hats, people, because we have a new eating disorder in town. This one is called “almost anorexia.”

Wait…what?!? Do we really need another pseudo-cutesy name for an eating disorder like pregorexia, drunkorexia, brideorexia, and manorexia that (in my opinion) negate the extreme suffering that accompany eating disorders? Also, in my opinion, the name really taps into the competitive nature of eating disorders. It seems to imply that if you only tried a little harder or lost a little more weight, you, too, could have a “real” case of anorexia nervosa! I know many find the diagnosis of EDNOS invalidating, but this title seems far worse, in my opinion.

According to an article in the UK’s Daily Mail (it’s nicknamed the “Daily Fail” in many circles), “almost anorexia” affects 1 in 20 women and some of the characteristics are as follows:

  • Yo-yo dieting
  • Binge eating
  • Obsession with food and weight
  • Distorted body image

The problem is that I would classify most of these behaviors as more disordered eating rather than a full-blown eating disorder. They (sadly) describe most people I know who don’t have an actual ED. The problem is that we’re not very good at distinguishing between disordered eating and eating disorders. Even some of the leading authorities on EDs like the Academy for Eating Disorders haven’t actually tried to distinguish the two. Is an eating disorder just a really extreme case of disordered eating? We don’t really know. I’m inclined to say not, but again, we don’t really know that.

Even if we did, so many of the ways we measure ED psychopathology are with surveys like the Eating Disorders Inventory, the Eating Disorders Examination, and the Eating Attitudes Test, which largely measure factors related to dieting and body image. The underlying hypotheses of these surveys are that high levels indicate a clinical eating disorder, moderate levels mean disordered eating, and low levels mean you’re one of the few whose brain hasn’t been warped by our cultural obsessions with food and weight. They inherently place EDs on the same spectrum as disordered eating.

Instead, I think a better way to distinguish eating disorders and disordered eating would be by assessing the function of these behaviors (many people report engaging in ED behaviors as a way to manage depression and anxiety) and the level of impairment brought by these behaviors. Regardless of your weight, BMI, or how frequently you purge, if your obsession with food and eating is getting in the way of you doing your job/schoolwork, affecting your relationships, etc, then you have a problem. Researchers have done this fairly well with exercise dependence- rather than being the amount of time spent exercising, researchers have found that your motivation for exercising (to improve negative moods like depression and anxiety) is actually far more indicative of a serious problem.

Psychotherapist Jenny Thomas, author of the upcoming book, “Almost Anorexia*,” talks a bit more about what the so-called disorder is in a short YouTube video below:

Part of what Dr. Thomas discusses in the video are the problems with the current diagnostic criteria for anorexia and bulimia. To put it simply, they suck. The vast majority of people with eating disorders have EDNOS rather than strictly defined anorexia and bulimia- many studies have found that between 50-70% of people with EDs seen even in specialty clinics have EDNOS (Walsh & Sysko, 2009).  Although many people refer to EDNOS as sort of “subclinical” EDs, that is completely, totally, and utterly wrong. Mortality rates of what Thomas and others call “subclinical anorexia” or “almost anorexia,” are actually the same as anorexia and bulimia (Crow et al., 2009).

With so many people falling into the EDNOS category, it really tells me that we’re not doing a very good job of defining the EDs out there. In the Walsh & Sysko paper I cited above, the researchers set out what they call “Broad Categories for the Diagnosis of Eating Disorders,” in order to reduce rates of EDNOS and to more accurately capture and classify the patterns and symptoms of EDs. They created four major categories: AN and behaviorally similar disorders (BSD), BN-BSD, BED-BSD, and EDNOS. These would do away with the weight requirements and body image distortions required for AN, as well as the specific numbers of weekly binge/purge episodes for BN.

A follow-up study showed that this scheme reduced the prevalence of EDNOS in people phoning the Columbia Center for Eating Disorders asking about ED care from 39.3% to 2.4% (Sysko & Walsh, 2011). Of course, there are lots of difficulties in changing over to this new scheme because we don’t know how similar the people in these broad diagnostic categories really are. But I think moving away from the obsession with numbers is a good thing because we are treating too many people as if their eating disorders aren’t that serious because they don’t meet the full criteria for anorexia and bulimia. In reality, it’s not that the person’s disorder is less severe, it’s that the diagnostic criteria simply SUCK. {I do believe that is the technical term there…}

In the end, there’s this: we don’t need another “new” eating disorder. We have terms for this already. Instead, we need to focus on figuring out better ways to diagnose eating disorders. The people with eating disorders that Dr. Thomas is talking about don’t have “almost eating disorders,” they have actual eating disorders. Tetyana at Science of EDs just posted yesterday showing that so-called “subclinical” anorexia nervosa is virtually indistinguishable from full-syndrome AN. We need to raise the awareness of these issues (which I do think some of this publicity does, and that’s good), and we also need to actually figure out a way to describe the wide range of eating disorder behavior and psychopathology that actually exists without inventing new names that we honestly don’t need.

*A note about the book title: it is part of a larger series that discusses seemingly sub-clinical mental health disorders, such as “Almost Alcoholic,” etc. So Thomas didn’t invent the name and shouldn’t be faulted for that. I get the need for a catchy title for a book, but I don’t think the editors are understanding how they are affecting the discussion around these disorders.

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39 Responses to “The problem with “almost anorexia””

  1. I’m not so sure if subclinical anorexia is the same as full blow AN when it actually comes to recovery. For some people low weight can be tied up in their self esteem. I have seen a change in some people after they have been borderline underweight and ednos and then drop below the 17.5 threshold. To some people their lower weight to them can become highly prized and valued. http://www.ncbi.nlm.nih.gov/pubmed/22311699

    I started out hovering around borderline underweight and then my weight dropped below the AN threshold. The lower weight became a reference point and again when i lost more the same thing happened. It doesn’t make things any easier.

    • I don’t know if anyone has compared recovery rates between sub-threshold and full-syndrome AN. That would be something useful to do.

      But I think weight and self-esteem get tied up in many people with EDs, regardless of what the weight actually is. Many people believe that thinner is better, and that’s especially true in EDs. I’m not sure that the specific number matters that much.

      • Thanks for the reply Carrie

        It’s an interesting topic.

        For me i have noticed that as time has progressed and my weight has got lower that my reactions to weight gain has been worse. At one point when i gained some weight from where i was previously maintaining i had to pay my sister to do my errands as i was just so phobic to everything. My weight though was less than where i could of handled that much earlier.

        I agree everyone who has an ed should get the help they need. I was just wondering that although presentation might look similar that there might be some differences in recovery. As you said though, there doesn’t appear to be any studies on that.

        • When i wrote earlier that my weight dropped below the AN threshold, i didn’t really want to get into numbers. But, at 15 it was borderline underweight, later losing about 18lbs so i was well below the AN threshold likely did not make things easier for me at 16 years old. I never even knew that my weight was diagnostically AN then until years later, it’s not like i sat down with a calculator working out my BMI at that age etc. I had treatment at 15 with a pyschiatrist and then stopped it before i left school. I came back from that a bit to severely relapse and again it was harder for me than before. Things went untreated from 16-21. Ideally in that situation someone should be having treatment continously to work on recovery and try and prevent things getting worse, engrained for them.

          To some people with ednos they may want that 17.5 marker as some kind of validation and this is concerning.

          I guess what i was wondering was about evolution time/adaption.

          I agree to with hm that numbers do not always indicate risk. But, the question about treatment response/evolution time i do find interesting.

          • You do raise a good point, but EDNOS is a rather large group of patients. Some have so-called “subclinical” AN, others more of a BN presentation, others chew and spit, etc. So it doesn’t tell us about the specific group of AN-type patients.

            Frankly, if you let an ED untreated, such that someone with EDNOS-AN loses even more weight to meet the DSM criteria, then it would make sense that it would take longer for them to get better. Almost any illness you don’t treat and let get worse and/or become more entrenched is going to get harder to treat.

            I think the validation thing is really difficult- we all want to be validated that our suffering is real and legitimate. That’s one of my problems with the specific cutoff points- that it’s extremely invalidating to those who don’t reach that cutoff and it can become a huge stumbling block to those who are trying to get back OVER that cutoff. It seems to indicate that at 84.9% IBW, you’re anorexic and have a problem, but at 85.1% IBW, you’re no longer ill. That’s how my insurance company treated me.

            I do appreciate all the studies you sent along- thanks for those.

      • Hi Carrie,

        “Frankly, if you let an ED untreated, such that someone with EDNOS-AN loses even more weight to meet the DSM criteria, then it would make sense that it would take longer for them to get better. Almost any illness you don’t treat and let get worse and/or become more entrenched is going to get harder to treat.”

        Sorry, but I have a lot of trouble with this; ED-NOS is not just an eating disorder that hasn’t progressed to the point of diagnosable AN or BN. MANY people can have an extremely severe and long-standing eating disorder that is entrenched and has been left to get worse, but they do not ‘progress’ to meet the criteria as a result of any number of factors.
        I expect that you know and agree with this, based on the rest of your comments, but I just wanted to point out this flaw.
        Best,
        R

        • sorry if that seems like nit-picking.

          • No, that’s a really good point. I was making the statement more in the context of a particular situation rather than an overall diagnosis.

  2. I agree with Carrie. Focussing on the numbers rather than the behaviour or motivation makes the problem seem less serious. It’s certainly helped me avoid thinking abouty current relapse. (not lost enough weight, yet, to have anorexia; not binging enough calories to have bulimia: ergo, not a real problem…). It also helps the more prolonged, less acutely and rapidly progressive disorders be recognised as serious in their own right, rather than ‘not quite good enough’ diseases.

  3. Also, the numbers are not always indicative of risk. Labs can show up “ok” repeatedly until the day that they suddenly… don’t. Weight and BMI are (at least somewhat) subjective. Maladaptive behaviors are a better predictor of risk.

  4. Hi Carrie, this is Jenny Thomas (author of the book). Thank you so much for your thoughtful post. You make a lot of excellent points and I truly think that you and I agree much more than we disagree:

    (1) My NIMH-funded research has highlighted that EDNOS is typically just as severe as AN and BN (http://www.ncbi.nlm.nih.gov/pubmed/19379023), that the weight criterion for AN is not only arbitrary but inconsistently applied (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847836/), and that current criteria often do not capture individuals who are non-white (http://www.ncbi.nlm.nih.gov/pubmed/20346191) or struggle with disabilities (http://www.ncbi.nlm.nih.gov/pubmed/22223010).

    (2) I actually share your disappointment in the way EDNOS was portrayed in the Daily Mail article. Please note that DM did not contact me (nor read the book) prior to publishing the article, which had many inaccuracies.

    (3) I do not consider “almost anorexic” to be a new eating disorder. When Harvard Health Publications approached me about writing a book about my research, I had to carefully weigh the potential implications of the title (which you have eloquently described above) to our society’s stereotype that people need to be incredibly underweight to “qualify” as having an eating disorder. Given that most people outside of our small eating disorder circle are not aware of EDNOS, and that in 2 months DSM-5 will formally change the name to FEDNEC, I ultimately decided that “almost anorexic” could be a helpful tool for encouraging people to consider whether their patterns of eating are a problem and whether they might benefit from help.

    • Hi Jenny!

      Thanks for commenting/clarifying. I do think a book that focuses on EDNOS is a great addition to the literature.

      I also appreciate that your sharing that the DM didn’t contact you about the article (really?!? As a journalist I find that highly disturbing though I guess not all that surprising).

      I realize that you didn’t mean “almost anorexia” to be treated as a new eating disorder. My concern is the way people find information on the Internet and search engines. And the media and even basic Googlers are going to see this under a different term. It *looks* like a new eating disorder to people who aren’t in the field.

      Thanks for commenting and taking the time to clarify- I really do appreciate it!

      Carrie

  5. I found these studies
    The first one found that “EDNOS remitted significantly more quickly than AN or BN but not BED” and some other findings. I have not though read the studies that they referenced and i don’t know about who they included in this EDNOS group. There also might be more recent research out there on this that i’ve missed.
    http://www.ncbi.nlm.nih.gov/pubmed/19544557

    The second one found that the response to CBT was not any different.
    http://www.ncbi.nlm.nih.gov/pubmed/20502064

    I found this study interesting, although it was about BN patients with a former history of AN and no AN. They were looking at the implications for treatment response of having a previous history of AN verse no previous history of AN.
    http://www.ncbi.nlm.nih.gov/pubmed/20143321

    Carrie, if you see this, please could you merge this into what i posted earlier today if it is possible. Thanks. Rachel

  6. Carrie,
    I really appreciate this post. I agree, there is a huge difference between disordered eating and having a full blown eating disorder. I think when two are merged it does a great disservice to all of us that are struggling with an eating disorder and marginalizes the disorder. Fad dieting and body dissatisfaction are not the same as having an eating disorder. I hope the “almost anorexia” and other pseudo disorder names stop.

  7. Hi, just came across this blog looking for other recovery blogs. I’ve just started one myself (trying to recover from bulimia) and support on my road to recovery would be so appreciated. Here’s my blog – http://goodbyetomia.blogspot.co.uk/

    I suffered with disordered eating for many years before my eating disorder really set in. I can’t remember, in fact, ever not having an issue with food. However, disordered eating and eating disorders are by no means the same. Thank you for this post.

  8. I think disordered eating has more to do with eating and food, self image and body image distortion and body dissatisfaction. I think eating disorders are often a response to cultural expectations, social pressures, emotional issues, personal distress and/or a need for a sense of control. So, eating disorders usually have nothing to do with the food, weight, body image at all. It may seem like that, but at the root, the eating disorder is a means of coping with unpleasant feelings and feeling in control of ones life. A person with an actual “eating disorder” deep down doesn’t actually care that much about how they look, its just a way to measure how in control they are. If you want more info/understanding on how to indentify between the two check this post out I got from an ED recovery group: http://practicepositivity.tumblr.com/post/46578795062/what-are-body-image-and-eating-issues-and

  9. That’s me… was me… maybe… I had a BMI of [redacted] and ate [redacted] cals a day. I weighed myself every 2 days.

  10. You couldn’t be more right 😀
    Same with drugs: you’re “a real addict” if you use everyday but if you use three times a week, you aren’t one. That’s just stupid. What’s really important is how much using drugs affects your life or like you said, how much your thoughts affect your eating habits and how these habits ruin your day.
    I knew a girl with anorexia who needed the diagnosis to be treated for free, but she still had her period, for some reason, and she was never diagnosed. She died of anorexia.
    A few years ago I was an addict and diagnosed with “non-purging subtype of bulimia” or something like that, because I used laxatives and fast or restrict my food after a binge. I think that using laxatives is also a way to purge (and I was told that fasting too). Anyway, some therapists told me I have an eating disorder and some told me I don’t have one “yet”.. truth is I have a serious problem while they all need to go and read their books before taking me seriously.

    Interesting post 🙂
    Thank you.

  11. By the way, I’m writing from Argentina 🙂

    • Hi Flynn, just to clarify, the thesis of our book Almost Anorexic is that you *don’t* need to meet diagnostic criteria in order to struggle with an eating disorder. My co-author, Jenni Schaefer, and I 100% agree that the most important thing is how your relationship with food affects your life. EDNOS, OSFED, and UFED are real disorders in need of real help.

      You can find out more by watching this brief YouTube clip: http://www.youtube.com/watch?v=q49hLXdbnuo

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