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Feb 19 2013

The Weight Requirement, and Other Ways We Diagnose Anorexia

This is a post that’s been a long time in coming. Unfortunately, every time I start it, I get upset and then have to leave it alone. So here we have it: what’s wrong with how we diagnose anorexia. Now with less ragequitting!

Anorexia has a weight requirement.

Refusal to maintain body weight at or above a minimally normal weight for age and height, for example, weight loss leading to maintenance of body weight less than 85% of that expected or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected.

PROBLEMATIC.

Please, someone define what a normal weight is. Because I know this totally isn’t controversial. Using BMI? It doesn’t account for muscle mass, so you’re leaving out  anyone who’s particularly athletic. Using clothing sizes? Ahahahahahahaha. 

Even supposing we had some accurate scale of normal height-to-weight ratios, should a diagnosis rest on a weight? If I’m restricting caloric intake, and I drop under 85%… Bingo, I have anorexia. Ding ding ding and all that. The next day, I enter treatment, or I eat a particularly large meal, or retain a little water, and suddenly I’m at 86%. Have I suddenly developed a disorder that is markedly distinguishable from what I had on Monday? I think not.

The emphasis on being excessively thin is also in the second criteria:

Intense fear of gaining weight or becoming fat, even though underweight.

Anorexia does not just happen one day, when you stop eating and magically, everyone can tell! This, like lots of the criteria, seem to be waiting to diagnose after the disease has progressed significantly.* That’s dangerous.

This is particularly true for people who start at an above-average weight. We fetishize the idea of heavy people losing weight through whatever means possible, up to and including unhealthy ones. (Biggest Loser, anyone?) It’s going to take an especially long time for family and friends to notice such severe weight loss–and of course, they’ll probably praise and reinforce it along the way–and all the while, the disorder will become more entrenched, wreaking havoc on the body it inhabits.

Amenhorrea

In postmenarcheal females, amenorrhea, i.e., the absence of at least 3 consecutive menstrual cycles. A woman having periods only while on hormone medication (e.g. estrogen) still qualifies as having amenorrhea.

Defined as non-menstruation for three cycles, this is competing with weight measurement for least helpful criteria. For one, it isn’t useful for anyone on hormonal birth control (withdrawal bleeding is not the same as getting your period). For two, it’s a fairly useless metric. Only cisgender women who can ovulate, are not pregnant, and who have reached puberty, but not menopause can use it. (Also, you qualify for this criteria automatically if you’re on birth control. Say what?) Further, there’s not a lot of research suggesting that amenhorrea occurs in a standardized way, or that it represents the severity of deprivation. Luckily, this is heading out with the publication of the DSM-5.

Waltzing between diagnoses.

In the span of six years, I met criteria for…

Anorexia nervosa (purging type)

Anorexia nervosa (non-purging type)

Binge Eating Disorder (BED)
Note: this is a proposed conditional diagnosis, given separate status from BN and AN. 

Bulimia Nervosa (non-purging type)

Eating Disorder Not Otherwise Specified (EDNOS)

…that would be all but two of the ways one can have an eating disorder. This suggests that we may just be quantifying eating disorders incorrectly. Those qualifying for anorexia diagnoses are automatically going to fall into EDNOS as they recover and gain weight (and consequently, no longer meet the first criteria for AN). Should we rename EDNOS as “Anorexia in Remission?” No, because then you leave out the others who were diagnosed as EDNOS for other reasons, such as not qualifying for a bulimia diagnosis. If EDNOS is made up of lots of people with very different manifestations of disordered eating, can we do any useful research about the diagnosis? Will we be able to draw any useful conclusions? Probably not.

And why does it all matter? After all, society recognizes that refusing to eat is bad, right? It matters because the research doesn’t look at “a population of women who have refused to eat at some point”. It looks at “300 female patients who had been diagnosed with anorexia in the last calendar year”. That means how we assess treatment, how we examine the genetic basis, how we study the disorder is a product of how we describe it.

And we’re doing it wrong.

*Also, the face of anorexia, besides being almost always a thin woman, is always white and upper class. Incorrect, and a scary myth to perpetuate.

12 comments

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  1. 1
    Nepenthe

    Yep. Yep Yep.

    I’m not going to describe specific encounters with people while I was restricting because that’s probably trigger city, but only one person ever even considered that massive weight loss over a short period of time might be anything but awesome for a slightly overweight girl/woman, including psychiatrists. With scales. Who knew exactly how much I lost and how fast.

    Thanks for not ragequitting on this one.

  2. 2
    Tetyana Pekar (@scienceofeds)

    Thankfully, there have been a fair amount of articles in the peer-reviewed literature discussing these issues, particularly the EDNOS problem (“AN/BN in remission” versus “lowest point is EDNOS”). I think these problems are more acute in the US where so much hinges on getting insurance coverage and thus feeling invalidated for not having full-threshold AN or BN (or BED, which will be in the upcoming DSM-V). I don’t think the problem is that bad here, you can definitely get treatment even if you are EDNOS.

    There’s a mismatch between what clinicians who work with eating disorder patients know/think and the writers of the DSM, that’s my opinion, anyway. No self-respecting ED clinician actually thinks there are just 3 disorders. Most people fall in the middle, with their EDs fluctuating. It is much rarer to find individuals who have always been one subtype. There’s talk of a spectrum model, too. There was a paper recently on that (the idea of putting it on a spectrum of “impulsivity”, which I don’t think is the best idea). But yeah, progress is sloow. The DSM sucks.

  3. 3
    Eristae

    I have issues with the BMI, period, because every time I talk to my doctors about achieving a healthy weight and mention the BMI, they give me the fish eye. Apparently the BMI is a bad thing even if you aren’t an athlete.

  4. 4
    teh_faust

    Yes, there is a lot wrong with the restrictivenes of the diagnosis. Correct me if I’m wrong but I think the ICQ isn’t quite as exclusive as the DSM here.

    “This, like lots of the criteria, seem to be waiting to diagnose after the disease has progressed significantly.” –

    This is especially dangerous because it can play into the mindset of the sufferer. Feelings of not being “sick enough” or having to get worse before we deserve to get help or can allow ourselves to get better.

    What is more, there is often a peculiar aspiration to/ idealization of the diagnosis “Anorexia” as though it were somehow more severe, more real or more “successful” than other disorders. I’ve met people who feel ashamed of having the diagnosis EDNOS or Bulimia and have positively envied those with AN, to the point of feeling inferior or believing that their problems are not worth treating.

    Defining anorexia via weight requirement doesn’t help with the view of it being some sort of holy grail of eating disorders and even might prompt people to further aspire to get sicker.

  5. 5
    teh_faust

    Duh… did I really type ICQ instead of ICD?

  6. 6
    Tetyana Pekar (@scienceofeds)

    Why do you say it is peculiar? It makes lots of sense to me. Restricting = self-control to a lot of people, and conversely, bingeing/purging = lack of self-control. The weight aspect adds to that. I think the idea that AN is more severe or the “better” ED is propagated by doctors, the media, and people in the community, too. Lots of bingeing/purging anorexics I know never seem to talk about the bingeing/purging aspects. It is more “shameful”. I felt that way for a long time, too. No one took it seriously because everyone was happy I wasn’t very underweight any more.

    It does prompt people to get sicker because sometimes that’s the only way they can get insurance coverage for treatment. Ridiculous system, really.

  7. 7
    Giliell, professional cynic -Ilk-

    The focus on weight is problematic in more than one way.
    It also means that people whose problem isn’t exactly an eating disorder get thrown into that basket, too.

    My sister is officially diagnosed with anorexia.
    Because duh, underweight.
    But her underweight is mostly due to
    A) being an atypical patient for Hashimoto’s disease and an underperforming thyroid.
    B) Having a life that doesn’t give her much of a good eating schedule.
    C) Depression
    The diagnosis of “anorexia” adds exactly nothing helpful, since she doesn’t obsess about her weight, actually tries to gain weight and is really, really not afraid to eat.

    And then there are “naturally” skinny people. From 3 months on, my oldest daughter was always “underweight”. It didn’t matter if I breastfed exclusively, added formula, fed her mashed veggies and porridge, served pizza. And I got massive pressure from all sides and I started to obsess about her weight, which didn’t mean she gained an ounce, but which became unhealthy. And then I stopped bothering and only made sure that she ate supper before dessert. And nothing changed about her weight. Doctors have by now stopped threatening me with a diagnosis but I still get a lot of judgement

  8. 8
    karmacat

    With DSM 5, the diagnostic criteria for Anorexia nervosa will change. They have gotten rid of the amenorrhea requirement. They have also changed the wt criteria to looking at wt in the context of age, developmental trajectory, sex, etc. So there are no absolute numbers. The work group for eating disorders has been trying to get rid of Eating disorder, not otherwise specificied (nos), given that 50% of patients have that diagnosis. They will be including binge eating disorder but diagnoses like atypical anorexia nervosa don’t have enough data to support as a reliable diagnosis.

    Anorexia in medical speak means lack of appetite. So someone can have anorexia and not have anorexia nervosa. For children, doctors usually look at the growth chart. So a child might be in 5th percentile but that is okay if she has always been there. It becomes concerning when , for example, a child drops for 50th to 30th percentile

  9. 9
    teh_faust

    It does only make sense from a disordered frame of mind.
    It’s an extremely damaging notion and having it reinforced by professionals certainly isn’t helping.
    Even if the huge problem of being taken seriously and having access to professional care are solved – these myths about AN being “better” or people with certain problems being undeserving might very still persist in the heads of many sufferers and these myths needs to go.

    In the communities I’ve been to everyone went out of their way to assure everyone else that there was no shame in Bulimia, or bingeing or overeating and that suffering from anorexia was just as shitty, but at the same time, most of us felt ashamed or or afraid of not being thin or sick enough or getting judged for their particular symptoms.

  10. 10
    Giliell, professional cynic -Ilk-

    Tell that to all the people who will judge you and even try to hold your child back because she’s somewhere below the 3 percentile line

  11. 11
    raspberry ketones

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  12. 12
    Connie

    Criteria is a mute point if health care professionals won’t make a committement to the diagnosis . As a healthcare professional (pediatric nurse practitioner) whose daughter displayed every classic symptom of an eating disorder: anorexia, restricting, bulemia, exercise bulemia , laxative abuse, binge eating to name a few.However, her pediatricians , and later her primary care (adult) doctor, ignored all of this and worse, our concerns. . Despite 2 grandmal seizures, bradycardia and a low potssium they would not diagnose her ,and because she was now adult (23) we had no say.

    I am devastated to say she passed away at the age of 23- we think she may have had a seizure or a heart attack and fell into a pool and drowned.

    I am researcing why doctors who have a suspicion or even more, don’t diagnose eating disorders. No question early recognition and treatment has a better outcome.

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