85% of what?

One of the major diagnostic features of anorexia (and the one that sufferer's tend to obsess over most- I know I did!) is that the person weighs "less than 85% of expected body weight."

I'm sure I'm not the only one that wondered: so what could that possibly mean?

What is "expected body weight"? I would think this would be quite personal. People aren't charts, they aren't all going to fit on some nice little table with nice, neat boxes in which body weight and height are placed. Some people tend toward the lower side of these charts, and others toward the higher end.

Some ED professionals use this "100 lbs for 5 feet, plus 5 lbs for each inch over 5 feet." Let me tell you. I'm 5 foot 5. When I was at 125, my periods were gone and I was plunging into the completely batty zone- and it wasn't even that much under my usual weight. If that's 100%, then what must 85% have looked like?

Utter insanity is what it looked like.

There are also the MetLife Insurance tables, the "what's your BMI?" game, and the pin-the-tail-on-the-donkey approach. I'm not entirely sure how much I'm joking about the last one.

These approaches make a huge difference in both diagnosis and insurance coverage for treatment.

My other question is this: why 85% at all? In young children, this might not even work, since it tends to be lack of weight gain with height increase as opposed to general weight loss. And once you hit 86% in recovery (if you were below 85% to begin with!), are you suddenly not anorexic anymore?

Any sufferer, and any of the people who care about them, know that this is bunk. Your brain is still anorexic even if your body is beginning to heal.

I understand, as an epidemiologist, that you need specific percentages and cutoffs in order to measure the incidence and prevalence of a disease. You do. There's no way around it. Insurance companies need it so they can be miserly and annoying- as well as code for different things, etc. Clinicians like to diagnose with a yes/no, either/or, sick/healthy manner of thinking. Which works with pregnancy, and not necessarily a whole lot else.

But why are we just waiting for someone to lose MORE weight before we try to start giving them a real diagnosis? Or saying they're "better" when they're clearly not at 100% of their normal weight and normal functioning? I do get that there is the category of EDNOS, but it is usually considered to be "sub-clinical" by insurance companies, sufferers, and even professionals.

Things like this--these seemingly piddly crunching of numbers and gauging of math--are important. They can save lives.

9 comments:

Anonymous said...

I get this 100%

I reached a BMI of 20 in the program I was in. And then I started struggling.

But I wasn't anorexic.

When do you DEFINE anorexia? The idea that I had to lose 14lbs before I reached a diagnosible state is ridiculous -- by then, I was no more capable to stopping myself from losing weight than trying to defy gravity.

Looking back, this pisses me off. I struggled just as much at X, as X-20 -- perhaps even more because there was the added shame of body image.

I think they need a criteria for recovery AN's that is not ED NOS -- to denote that these people are high risk AFTER weight restoration and although one diagnostic criteria is no longer fufilled, the psychopathology is still there.

These people may still need intense help -- perhaps even more because you reach a target weight and go...."OK. . .I'm on 3000+ calories and now have to get back down to a normal intake and learn to live with my body and COPE without an ED.

So many professionals preach that weight restoration is not all of solving an ED -- and yet discharge for programs and level of well being is continuously monitored/judged by this criteria.

Arg!

A:|

Lisa and Jim said...

I think for my own diagnosis, "expected weight" was determined from my childhood growth charts. My weight followed a nice curve and then became a ski-jump. But I was 18 when I was diagnosed - I don't know if it would be applicable to adult patients.

elizabeth said...

I completely agree. all of this is so hard to determine. I think doctors need to throw these charts away and spend more time with patients in order to know what's really going on. Everything else seems so inconsistant and unreliable.
a really interesting take on bmi's at this link, have you seen this?:
http://flickr.com/photos/77367764@N00/sets/72157602199008819/

Cammy said...

I agree with A., there really is a need for more awareness, maybe a name (although any label has to have some kind of arbitrary boundary, that's just how those things are) for that stage when physically you're not "anorexic," such as during refeeding (can you be anorexic while you're eating 3000+ calories? absolutely, if disordered thoughts are the criteria, but some people may not realize that) or when you have made a lot of progress in weight restoration but are still really having a hard time with disordered perceptions or thoughts. Just when you're having to deal with major changes, you start to look healthy enough that people assume (or you think they assume, same effect either way) that everything is "fixed" and the problem is gone, when in reality there is still so much work to do.

licketysplit said...

this has been extremely frustrating to me in my recovery and in my efforts to reach out to others...so much emphasis on the stupid numbers only serves to exacerbate the problem! grrr! thanks for writing this blog :)

mary said...

This is a huge problem for parents who are trying to get treatment early on when their kids are still in the normal weight range. They insist on a certain low weight or drop which is ridiculous. Is this not a mental disorder as much as one which puts a person at physical risks? And how do we weigh the degree of the ED's invasion on a person's mental state if we don't trust the patient or the parents that can see the signs and sought help? GRRRRRR

Anonymous said...

Thank you for this post. I've never understood this whole 85% thing either. It baffled me. And you pose such good questions -- questions that I wish there were answers to.

I definitely think the good old DSM needs a revision...

Ali said...

THANK you! I can't quantify the mental torture I've put myself through after hearing the "ideal" (or in this wording, "expected") body weight my medical doctors came up with based on my height. After I clawed myself up from 80% to 100%, I was still: cold all the time; completely obsessive and ritual-driven; possessed with a pathological drive to lose or maintain; and seeing sparkly things whenever I arose from a sitting position. Take that weight and add 6-10 lbs, and that's where my body's been for 4 years of (mostly) intuitive eating.

The 85% business? Malarkey. Just because organs aren't digesting themselves at 90-100% doesn't mean you're done thinking like an anorexic.

Anonymous said...

Hmm - wouldn't it make sense to reframe the benchmarks of a neurobiological disease around behaviors and ideation? No one uses weight to judge your response to depression treatment (or do they?). And from a physiological standpoint, by the time most people reach the DSM standards, they are in pretty tough shape. It's like if we waited until patients were actually in heart failure to diagnose heart disease. We don't, because by then treatment is much harder, and for some it can be too late to do anything.

But, IMO, the real problem is that the disease is not about the WEIGHT, it's about the THOUGHTS and BEHAVIORS. Clinicians and epidemiologists are just using the wrong damn benchmarks altogether.

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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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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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