Saturday, July 13, 2013

Not thin enough? Not sick enough? YOU—eating disordered?

I’ve done it. In just a few sessions I made my mark on a future generation of nutrition providers—an intern interested in eating disorder treatment, no less. She was, like most, biased by the sensationalized images and the media’s descriptions of emaciated anorexics; of teenage girls who ‘just wanted to be thin’; and of visibly unhealthy looking bulimics. Those were people with eating disorders, she believed.

Yet in the few days she has spent with me, she’s seen anorexic men, normal weight binge eaters, and women in their 40s, 50s and 60s struggling with eating disorders. Some developed their disorder recently, some only recently presented for treatment, having struggled with their relationship with food for decades. All are pained by their condition—no one chose to live with a disorder. Really, there are places they’d much rather be than in a medical office on a nice summer day.

Yet what they all have in common is that their appearance is not a give away. Most look just fine, I must say. (Although I’ll admit that without their layers of clothes some would be viewed as significantly underweight.)

Yet most carry their disorder on the inside.

It’s unfortunate, really, because as a result, they have suffered silently. Their doctors and health care providers never knew to direct them for the necessary expertise and failed to support recovery. And often they put their foot-in-their-mouths with inappropriate comments about weight or “healthy, runners’ blood pressures.” If only they could have seen it. If only it was as clear as the media portrays it. If only they knew that most people living with eating disorders don’t look like they have an eating disorder.

If you didn’t know to ask, you’d have no idea that perhaps 95% of their thoughts are spent perseverating about when they will eat next, and just how much; about whether their stomach is still flat, or whether they will have access to a bathroom after eating to purge; or whether they’ll have an opportunity to binge without anyone to witness it. If only medical providers thought to evaluate food intake and behaviors before the comprehensive, costly GI workups which fail to identify the cause of the chronic distress from hunger or slowed motility, or the reason behind the heartburn—namely, the chronic purging.

How helpful it would be for primary physicians or the referred-to neurologist seeking an answer to the puzzling chronic headaches. No, no one considers inquiring about the time between eating and the food restriction. Yes, migraines and other headaches occur more often with under eating.

Hope comes with new DSM

Fortunately, the new DSM-5 guidelines may help. They’ve changed the criteria for defining anorexia, removing some of the requirements that kept individuals from getting the help they needed. And, from misleading health providers about what eating disorders really look like. Now, rather than defining anorexia by using a specific weight change (such as the previous 85% of normal weight) it appropriately offers a broader definition. A low BMI is not a requirement for diagnosis!

The guideline states “the clinician should consider available numerical guidelines, as well as the individual's body build, weight history, and any physiological disturbances". In other words, an individual who is objectively overweight or high BMI can now, fortunately, be fairly labeled as anorexic if he/she has restricted intake resulting in significant weight loss together with physiological signs of starvation together with meeting all other criteria for the diagnosis. And, missing a period is no longer a requirement for diagnosing anorexia. That certainly may impact the many men out there struggling with feeling like an imposter with a ‘women’s disorder’!

No, you don’t have to fear that your weight isn’t low enough for your disorder to be acknowledged. And you don’t have to look like an adolescent poster child for anorexia.

No longer should you feel you need to lose weight to fit the anorexia definition to enable treatment or, for that matter, to validate your suffering. No longer does EDNOS—that vague ‘not otherwise specified’ diagnosis—need to be used for those restricting, nor for those suffering with Binge Eating Disorder (BED). Yes, you are sick enough.

Anorexics are 60 lbs. And individuals with anorexia are also 200 lbs. Dropping weight with severe food restriction is no less serious if your 30 lb. or 50 lb. weight loss brought you to 130 lbs. or to 90 lbs. Thank you, Deb Burgard, PhD, an AED member and blogger for HAES, for making this point loud and clear.

Having a BMI in the healthy range is hardly healthy if you are compulsively exercising, purging or restricting to maintain this place.

I’m so glad the intern gets it. It will make her a better provider when the time comes to practice, as she will now know to ask the questions to help identify and ultimately support recovery from an eating disorder.

But have I made my point strongly enough for you to hear? Please pass this along to increase awareness—to your friends and family members who you’d never know might be suffering—and to your medical providers who never thought to ask.


  1. I really like this post. I think this about myself all the time...I don't really have an ED because I'm not emaciated. I don't look like I'm going to pass out at any moment. My doctor never noticed that my weight, according to my therapist's stupid chart, is low. People don't notice because I have muscle tone and an athletic build. People think I'm just really fit and healthy. Hmm, I don't tell them otherwise because I don't really believe that I'm sick enough to have an ED. I feel like the only way I would probably think of myself as having an ED would be if I was hospitalized. The only time I can kind of see that it's a problem is if I think of someone telling me that I couldn't exercise or that I had to eat whatever was put in front of me.

    1. I have been through multiple treatment programs (both individual and intensive outpatient) and my eating disorder still tells me every day I am not sick enough to be rewarded with the title of "anorexic." I always think I must be hospitalized in order to truly be sick enough. Intellectually I know how twisted this is, however the disease is very good at making those struggling feel like they must struggle more. Thank you for posting this; it truly made me feel like I'm not alone.

  2. What a great post. I know so so many women who are athletic and fit and look great but who constantly think and measure and worry about food. That is why I am taking active steps to get past that. It's sad to see people suffer so much.

  3. Lori...this is one of your most excellent a "bevy" of stellar posts... and one that "hits home"..I am certain...for many of us. My own endocrinologist used the "runner's low heartbeat" explanation to, in mind mind, "wave away", if not dismiss the severity of the the situation...although I was "barely" within my "healthy range"...

    I have often restricted prior to medical appointments to my ED well as the endocrinologist for "fear" they would not consider myself as being "severely anorexic" enough to be taken seriously as the 16 year olds who present with recent dramatic weight loss Interesting as well the new considerations regarding not having to have missed menstrual cycles as a component. The male population can find true relief in well as the older women (e.g. myself) who have had the years of missed menses met with comments such as " Oh doesn't matter anyway, because you should be right about the age where most women enter menopause. Thank you for this Lori!

  4. This is such an important post, one of my friends has anorexia; I never really knew much about it until I noticed she was constantly worrying/thinking about food, and then started to lose a lot of weight and yet was never satisfied. Thankfully, she's making great progress but I just wish more people were aware of how serious it can be.