Thoughts on DSM-V: Anorexia

A few weeks ago, I posted on the draft criteria for eating disorders proposed for the DSM-V, and I promised you my thoughts on the changes (or lack thereof). I spent several days mulling over my thoughts, and then I spent the rest of the time following the ongoing discussion on an eating disorders listserv. The discussion still hasn't concluded, but since it doesn't show any signs of slowing, I decided to bite the bullet and get on with it.

As an overly brief summary, the three most major changes to the current DSM diagnostic criteria for eating disorders were:

  • removing amenorrhea as a criteria for anorexia
  • removing the purging/non-purging subtypes for bulimia (non-purging bulimia would be considered, essentially, binge eating disorder)
  • the addition of binge eating disorder as a stand-alone diagnosis
First off, I want to credit some other awesome bloggers for their thoughts on these changes. Both Rachel and Kim had some thoughts that are well worth reading, and I highly encourage you to do so.

Since I have many thoughts, I decided to break this post into several parts. I decided to start with anorexia, since that's where I have the majority of my thoughts, and I will post the next part on other diagnoses tomorrow.

Anorexia Nervosa

The removal of the amenorrhea criteria is, in my mind, a really good thing. I have no quibbles with that. What is rather interesting is what stayed the same. Both my regular readers Cathy and Katie pointed out that the "overvaluation of weight and shape" isn't universal to anorexia, nor is it necessarily what is driving anorexia. In Kim's blog on the DSM-V criteria, she writes:

In my opinion, the DSM doesn't really do service to the underlying drivers of anorexia. I think most self-destructive behaviors are a way to self-medicate, and I'm very aware that my anxiety went way, way down when I was heavily involved with my eating disorder. Everything seemed very peaceful and quiet when my mind was just tallying calories. For me, recovery is about learning to manage anxiety in a healthy way. It has very little to do with appreciating the Dove beauty campaign. Yes, there are days when I "feel fat," but this mostly translates to "I feel stressed." Somehow, they got linked in my mind (stress-->fat-->eat less-->less stress), but that doesn't mean the driver is for me to be thin; the driver is for me to be calm, and thinness was the result.

The DSM sort of supports the idea of Ralph Lauren ads and anorexia being paired. I just don't see this. This direct linkage seems to fuel the fire that eating disorders are adolescent obsessions with looking good. That fuels another fire -- that treatment is simple: Just eat, write body affirmations, paint your nails, you'll be fine. This starts a whole other inferno of self-hate and shame for the sufferer who feels like, "Why can't I just get better then? Am I just a vain, stubborn idiot?" The only thing that has extinguished all this has been to realize (with the help of Carrie's blog) that this is an illness.

All I can add to this is: amen!

What generated the most discussion on the listserv was the "85% of ideal body weight" criteria for anorexia. Laura Collins pointed out that anything under an individuals ideal body weight was a sign of malnutrition, so it almost seems like the 85% criteria was written by anorexia, for anorexia. Others have pointed out that these criteria leave out people who started restricting at a higher body weight, indicating that they don't have anorexia when all other signs say that they do, indeed, have anorexia. One could say that this is what EDNOS is for, but there are several problems with this. The first is that if they really do have anorexia, numbers on a chart be damned, they should be diagnosed with anorexia. The second has to do with EDNOS and mental health parity. Technically, there's mental health parity in the United States, which means mental illnesses need to be treated on par with physical illnesses (why they're even separated is beyond me, but that's another post). It's a step, and I'm happy it's a step, but let's be honest: everyone knows that mental health care gets the short end of an already very short stick. And in some states, EDNOS is not a parity diagnosis; only anorexia and bulimia are. So these semantics can have huge effects on who gets treatment.

Another issue is that people with eating disorders get very fixated on the 85% "rule." The psychology of EDs works like this: people with lower ideal body weights are somehow "better" and they "deserve" treatment. So if you don't meet that 85% cutoff, many people's thoughts are to lose more weight. I'm not saying we should change the diagnostic criteria to make sufferers happy--this thinking is an issue with ED psychology and not so much the diagnosis. But I'm not so sure what is "magic" about the 85% cutoff. It's not like I hit X pounds and I went from not-anorexic to anorexic, nor did I stop having anorexia once I crept over that 85% mark.

I have almost conflicting feelings on the focus on weight in the ED world. On the one hand, if everyone is weighing me all the freaking time, it's hard to stop focusing on weight. On the other hand, being weighed regularly gives me some comfort because I know I'm not constantly gaining weight. And for someone with a long history of anorexia, tracking weight can be a useful tool. It's not the be all, end all of my treatment and recovery, but if my weight starts slipping, that would be a useful thing to know. Part of the reason I find weight monitoring* helpful is that I'm not necessarily the brightest lightbulb in the box when it comes to recognizing relapse. How can not eating be a problem when it seems like a solution?

I do believe (and evidence suggests) that our bodies gravitate towards our set point weights, but getting there is far from just letting "gravity" do the work. After this past relapse, it took me almost half of my time re-feeding to get the last five pounds on because my metabolism started seriously fighting back. I would have much preferred not to bother with that, but I was lucky to have a team that absolutely insisted. I don't necessarily want people to totally ignore my weight, to just let nature sort itself out. Long-term, ongoing malnutrition wrecks havoc with your body, and that's not something on which I want to take a let's-just-throw-the-dice-and-see-what-happens approach.

That being said, "ideal weights" and "target weights" may not be stagnant, and they may not be one particular number. One treatment center told me my ideal weight down to the half pound, which made me laugh even then. Weight isn't the sole indicator of health. I don't think weight should be ignored, but it's just one factor in an overall picture.

And on that note, I will transition to the last part of my thoughts on the anorexia criteria in DSM-V. The entire DSM was altered slightly to have a dimensional aspect to diagnosis rather than a categorical. Click here for a more in-depth discussion. Take depression. In order to be diagnosed with depression, you have to meet five of nine symptoms. If you don't meet all five, technically, you don't have depression. That's the categorical diagnosis: you have it, or you don't. (Talk about black-or-white thinking!) The problem is that people can suffer from four of the criteria in very severe forms that impact their life. So now the DSM is also looking at severity of symptoms when using the diagnostic criteria so that the hypothetical person in the above example will be diagnosed and treated for depression. Which is good.

As part of this, the draft criteria for anorexia included a "severity" section. You know how severity of anorexia is likely to be calculated? Wait for it...wait for it...BMI. That's right. From the professionals who are constantly saying "it's not about the weight" are the ones telling you that the less you weigh, the sicker you are.

I'm not going to say that health and weight have nothing to do with each other. People with anorexia nervosa and very low body weights are clearly ill. I'm not disputing that. But weight is not the sole indicator of health or severity of anorexia!! There are so many other ways to measure severity, ways that don't collude with the I'm-not-that-sick mentality so common in eating disorders. I have been very, very sick at relatively normal weights, and some of the sickest people I met weren't those with the lowest weights. Anorexia is a mental illness, no? It's not primarily a disorder of low body weight; it's a disorder of self-starvation. Yes, weight loss is part of that, I'm not denying it, but perhaps severity could be measured by things like bradycardia and orthostasis, by body temperature and cyanosis, by energy imbalance and Eating Disorders Inventory scores, by how much of your thinking is dominated by food and weight and how frightened you are of gaining weight. But not weight itself. The severity of binge eating disorder isn't measured by BMI, it's measured by number of binge episodes per week. It can't be that hard to come up with a similar criteria for anorexia...can it?

I am actually shocked that more people haven't noticed and discussed this. It seems like such a huge issue (no pun intended), and it's basically been overlooked.

*Currently, I do weekly weigh-ins and I would imagine these will be spaced out as I continue to do well in recovery.

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19 comments:

Kim said...

First of all, thanks for the shout out :) Much appreciated!

I loved this: "From the professionals who are constantly saying "it's not about the weight" are the ones telling you that the less you weigh, the sicker you are."

I'm still befuddled about how to approach weight in recovery. Some days, I'm very Zen and of the mindset that it doesn't matter much. Other days, I think it's very important to track it and that the number does matter. This 85% thing has tripped me up, as I'm around 90% and I feel like, "Oh, ok, I'm fine," though I know I still need/want to gain some weight to be really, ideally healthy. It's so individual. BMI seems like kind of a silly measure. There are people at low BMIs who are totally healthy, and people at "healthy" BMIs who are way too low for them. Creating some kind of standard doesn't really work. In therapy, they tell you to appreciate your body, your unique traits; but, therapists are taught to see all of us exactly the same, measured by the same numbers and criteria. It's a bit confusing for the patient.

H. said...

I totally agree. I'm in a grad Psyc program and everyone is talking about the PTSD/trauma category and even IF EDs get mentioned its about addition of BED. As a burgeoning ED professional I have issues with the BMI and 85% cut off in AN, you and Kim have it right on, while weight is a part of it some of the sickest people are not always the skinniest (this may also have to do with a higher set point: eg if you're 5"5 and have set point of 145, getting to 110 is a huge feat, as opposed to if your 5'5' have set point of 120 and get to 110...don't you think?)
Thanks for this post and talking about this issue,m I wish it got more attention!

Anonymous said...

The public can comment on the proposed changes to the DSM. Go to www.dsm5.org The deadline is in April.

I Hate to Weight said...

and scales can be wrong and vary. and body weight fluctuates from drinking water, going to the bathroom, eating salt.....

weight is pretty imperfect.

i still don't really understand BMI, but that's just me.

i had every anorexic tendency when i was coming down from 185 pounds, but no one saw it because i didn't look malnourished. instead, my behaviors were encouraged, because i was losing a lot of weight.

there's got to be a better way/weigh!

now.is.now said...

I've always wondered why there wasn't really anything having to do with your MIND, your BRAIN, and your THOUGHTS in the criterion for the MENTAL illness of anorexia besides "scared to gain weight."

Katie said...

You just made my day by mentioning my name, I feel all star struck now. I'm such a nerd, honestly!

Oh wow, creating a meausre of severity for anorexia based on BMI is going to upset pretty much everyone who has personal experience with an eating disorder. I agree with you on the point about EDNOS. It's not just an issue in countries with health systems funded by insurance, over here in the UK many NHS EDUs won't even accept people of 'normal' weight for outpatient therapy, let alone day care or IP, unless they are severely bulimic. They would be passed onto the community mental health teams for help with any other co-morbid disorders instead. I suppose this is fine in theory - at least they would be getting some help - except that CMHTs often have some very odd ideas about eating disorders, recovery and nutrition, and their emphasis is generally also on living with an illness rather than the possibility of recovering from it. If you don't respond to 12 weeks of CBT you're in trouble, really. Plus it must be really distressing to be told by an eating disorder unit that you are not underweight enough to be worth their time and resources if that eating disorder is making your life hell. Since the most common cause of death associated with eating disorders is suicide, why on earth is there still all this emphasis on weight? Of course it can't be ignored completely because people need to be at healthy weights to recover fully, but weight is not necessarily a measure of severity. In terms of risk of mortality, I know I was far closer to suicide when I had EDNOS at a healthy weight in my teens than then I was at a very low weight more recently, because being underweight made me feel sedated and calm. Surely severity should be judged in terms of emotional distress and frequency/severity of behaviours rather than weight?

I'm also a little annoyed about the exclusion of non-purging bulimia. I would have fallen into this category when I was younger, but I certainly don't see myself as having BED. My bingeing was a direct result of previous days/weeks/months of restricting, once I had gained back to a healthy weight it always stopped. I restricted, lost 10lbs or so, started bingeing, overexercising and abusing laxatives (although not frequently enough to be diagnosed bulimic), gained the weight back and started restricting again. For a decade. I was never over the lower end of the normal BMI scale during that time. I don't get how that is binge eating disorder, when clearly the leading ED behaviour was restricting - if I had been helped to change that behaviour all the others would have stopped too. In fact, I stopped bingeing a few years ago when my phobia of being sick got really bad, but I can't see this change in criteria helping all the other people with the same NOS pattern of behaviours I used to exhibit.

Thanks for such a thoughtful analysis Carrie!

EvilGenius said...

afaik we already have this 'severity' thing in the UK ;) I won't give the numbers cause it's pretty triggering (and they're really low!) but it's something like under X = severe, under Y = critical and so on. I actually do understand professionals using this sort of system but I don't think it's the kind of thing which should EVER be released for patients to see.
the trouble is, that sort of 'rating' works well for some and not so much for others. it's never bothered me that much personally, because to be honest I AM more ill at lower weights. but that's because all of my ED behaviours lead to weight loss, and weight loss tends to make me mentally more unstable. in someone for whom that equation doesn't hold true, assessing severity by BMI is totally backwards.

Cathy (UK) said...

Hi Carrie, I've only just read this... Thanks for mention :)

I guess I have 'harped on' a lot about DSM IV on your previous posts, but I will summarise by stating that the main concern to me is the inference (made by DSM IV and V) that anorexia nervosa is all about weight and shape. In other words, the objective of the behaviours (be these restriction, over-exercising, purging...) is to lose weight, keep weight low, become very thin, or remain very thin.

It all sounds soooo 'pro-ana' (yuck).

There is no mention of the other personal 'meanings' and 'functions' of these behaviours, yet most people with anorexia nervosa use these behaviours to regulate mood, and to regulate their lives.

Sheena said...
This comment has been removed by the author.
Jessie said...

*headdesk* on the severity piece. That's all I have to say.

And that it's ridiculous that two people who have almost identical behaviors can get different diagnosis based on what weight they happen to be at. Can we say arbitrary?

IrishUp said...

Yep, just gotta nth that leaving that 85% criteria means that lots of people will wind up EDNOS OR undiagnosed, until they are actually experiencing drastic physical compromise.

Great great post, Carrie!

A:) said...

I also don't agree with the severity piece -- but then again, what do we know as laypeople as opposed to professionals. . .

I just think that it fails to look at the whole picture. No one is refuting that someone with a BMI of 12 is more compromised than an individual with a BMI of 17. However, it is the grey areas that concern me.

If patient A has a BMI of 16 and patient B has a BMI of 14, under this new criteria, patient B would be of greater severity and in a "triage" type treatment system, would receive help sooner.

However, let's say that patient A has suffered from AN for 20 years, has lost 30lbs in the past 4 months and has dangerously unstable bloodwork/ECG results. By comparison, patient B is 20, has been stable at a BMI of 14 for two months and has had no prior treatment. Who is more severe? Using BMI as a sole indicator of severity presents problems.

A good ED professional will be able to take history into account. HOWEVER, the DSM is used widely as a standard by health professionals who do not know much about mental disorders and it sets a GUIDELINE.

It is this guideline that is dangerous because I would be afraid it would be taken as a rule by less experienced professionals, in the same manner that the under 85% criterion is supposed to be a guideline, but is often intepreted as a strict diagnostic rule.

Ack. Really, I can see their point, but who diagnoses severity of a mental illness on ONE criterion. If we left AN out of it completely and looked at malnutrition ALONE, I don't think we could diagnosis THAT by one criterion.

A:)

A:) said...

BTW on the DSM V website, how can we see other people's comments? Are we not able?

sunshine said...

Ooh, wow this is such an important issue to bring up...interesing too. I hate the way anorexia is based on weight so much, I mean yeh it is important but it's not the be all and end all. Health professionals are just as bad at this in Britain. You know my psych actually told me I wasn't at low enough weight even though I was in hospital at that point for anorexia. Wtf? And then that point you made about suddenly being anorexic at the 85% cut off...how true, it's like they just picked a number and thought, "that'll do!" As for camhs services in the UK(child and adolescent mental health) don't even get me started, it's crap...they "forgot" to refer me to the EDU! Plus what happened to the main criteria that eds fit into being Mental Health? Thanks for this post, wish it was brought up more. Take care, sorry I ended up ranting a smidge x

IrishUp said...

A:)
I just want to expand that the "gray area" you described so well can be even larger. Our D was in a pediatric cardiac ICU with severe bradycardia (dangerously low heart rate), and her BMI was 21ish. At that BMI she also had severe anemia, hypoalbuminemia (low blood protien), hair loss, gum bleeding, weakness, postural hypotension, tremors and shivering .... in short, her body was suffering severe physiological consequences of her AN, although any BMI calculator will tell you that 21=healthy.

Oh, the crushing weight of the irony.......

Beth said...

I also have HUGE issues with BMI being used to measure AN severity. As you pointed out, the severity of both BN and BED is measured by frequency of behaviors, not by the outcome of those behaviors. For AN though, severity is being measured by the supposed outcome of restricting - loss of weight. This would be like measuring severity of BED by amount of weight gained!
BMI and behaviors is definitely not a 1:1 correlation! I have lost weight eating a relatively normal amount when my metabolism is working, and gained weight while starving myself because my body was in starvation mode and "holding onto everything." Using frequency of symptoms to measure severity, the latter would be considered more severe, but instead it is the former that is now considered more severe, even though it really isn't.

Anna said...

"Others have pointed out that these criteria leave out people who started restricting at a higher body weight, indicating that they don't have anorexia when all other signs say that they do, indeed, have anorexia."



Oh my god. This has just struck a major chord for me. I'm more or less recovered, but I've struggled at times with what to say I've recovered from, because I went from (by our ever-so-helpful friend the BMI) a 27.3 to a 20.4 - "overweight" to "normal". But in doing so, I ended up at 75% my previous body weight. Which, given that I've returned to it now (still eating, I admit, slightly less than I did pre-ED), suggests normalcy for me (for starters, I'm a 34DDD, which is the fault of genetics. Even anorexic I still wore a D cup).

So thanks for saying something (however inadvertently) that allows me to believe, for the first time really, that maybe my belief was legitimate.

Carrie Arnold said...

Anna,

I'm glad this post could provide some clarity and insight for you. Best wishes to you in your recovery.

Erin said...

This was posted ages ago but saw it as one of the top popular posts and I have to say THANK YOU THANK YOU THANK YOU.

Oh, and thank you!

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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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