An eating disorder by any other name…

27th February 2008

An eating disorder by any other name…

posted in Eating Disorders |

This week marks National Eating Disorders Awareness Week. My husband and I will be participating in a candlelight vigil and walk Thursday night to help raise awareness about the disease, but I haven’t anything special planned here on the blog to commemorate it. While I applaud NEDA’s efforts in popularizing the week-long awareness campaign, my goal is to raise awareness of and educate others about eating disorders this week and the other 55 weeks of the year.

Eating disorders affect as many as 10 million females and 1 million males in the United States, according to the National Eating Disorders Association, but because of shame and secrecy, it is likely that many cases are not reported.

And yet, eating disorders are often trivialized, marginalized and even glamorized by the media, while insurance companies persist in refusing coverage of the illnesses even as they offer health benefits for drug addiction and depression.

Why are eating disorders today as misunderstood as when Catherine of Siena starved herself to death in the fourteenth-century? As author Aimee Liu suggests, the problem may be dialectical:

I think the term “eating disorder” bears some of the blame, as it suggests the problem begins and ends with food.

…That’s why, as an experiment, I invited readers of my blogs and newsletter to send me ideas for a term that might reposition the syndromes of bulimia, anorexia, and binge eating disorder in the public consciousness — a term that would command the attention, respect, and concern these conditions deserve.

The sheer diversity of ideas I received shows how complex these problems are – and what a grave disservice it is to pigeonhole them as “food and weight” issues…

Reader-suggested names included such names as “empty-self syndrome,” “sustenance deprivation,” “maladaptive coping syndrome,” “genetic identity syndrome” and “food-focused disempowerment disorders.” Other suggestions included “starved self syndrome,” “feast or famine defense,” “deprivation addiction,” to “metabolic manipulation disorder.”

Not only does Liu bring up some thought-provoking ideas on the meaning of language, the diversity of naming suggestions for eating disorders also highlights a crucial chink in the study of eating disorders. Despite the vast range of eating disordered behaviors, there are exactly three disorders one can be classified with: Anorexia nervosa, Bulimia, and Eating Disorders Not Otherwise Specified (ED-NOS).

As I explained in an earlier post, ED-NOS is this vague catch-all category in which people who don’t fit one or more of the criteria for anorexia and bulimia are thrust in. Those classified with ED-NOS can range from an morbidly obese binge-eater to a 90-pound girl who meets every criteria for anorexia, except she still menstruates. Note: Because of the strict criteria set forth in the DSM for the diagnosis of anorexia, a man can never plausibly be diagnosed with the disease as the criteria requires a loss of menses.

The lack of naming an eating disorder is made problematic when trying to seek out help for the disorder. It may be more difficult to explain to the insurance company the need for treatment when the patient does not fit the current diagnostic criteria for either anorexia or bulimia. Sometimes, the insurance companies use this as basis to deny coverage altogether. But eating disorders are serious and even deadly at all weights and all deserve and demand immediate and adequate coverage and treatment.

What other names would you add to Liu’s list? Or, do you have any personal experiences with health insurance companies to share?

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This entry was posted on Wednesday, February 27th, 2008 at 1:29 pm and is filed under Eating Disorders. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

1 On February 27th, 2008, Caasana said:

Yay medical terminology class! So phagia means eating/swallowing and nervosa means having a nervous origin. Apply prefixes as necessary.
Anorexia becomes Aphagia Nervosa – anorexia means a lack of appetite, which doesn’t seem to be true. Aphagia would then mean lack of eating, or even swallowing for those who chew and spit out.
Bulimia becomes Dysphagia Polyemesis Nervosa – dysfunctional eating, a lot of vomiting. It’s not hyper because that could potentially rule out people for not *excessively* vomiting. I wasn’t sure if it should be excessive or dysfunctional eating, I admit to not knowing enough to say which is a better defintion.
Binge Eating Disorder becomes Hyperphagia Nervosa – excessive eating. I wish I knew how to specify excessive eating in a short period of time here.
ED-NOS becomes Dysphagia Nervosa – catch-all for any dysfunctional eating patterns.

posted on February 27th, 2008 at 2:55 pm

2 On February 27th, 2008, Vanessa said:

i have a funny story about health insurance! (well, it’s funny now)

i was in a housing program, and the staff members realised i’d been starving myself and losing a bunch of weight quickly. so they told me i had to go into a hopsital until i could eat regularly (they claimed it was a liability thing). but of course when i tried to do so, i was ineligible for hospitalisation because my weight was too high! so after trying and failing to follow an IOP regimen i went back to the crisis evaluation team and told them that being denied a hospital placement and the fact that i was being kicked out of housing unless i got in had made me want to kill myself. and, btw, could they please see if a bed was available in the psychiatric hospital that had the eating disorder unit? wink wink, they found the psych bed and a couple days later i was transferred to the ed unit from the psych ward.

it shouldn’t be so difficult!

posted on February 27th, 2008 at 4:58 pm

3 On February 27th, 2008, Emily said:

You make some great points, I just wanted to clarify that males and prepubescent girls can still be diagnosed anorexic, since that particular criteria (losing your period) only applies to women who have started to menstruate. DSM IV may have problems, but expecting men to menstruate isn’t one of them.

posted on February 27th, 2008 at 5:39 pm

4 On February 27th, 2008, Faith said:

I’m going back into therapy after having a problem with my therapist who was an ED specialist. I was “bulimic”. I am still really struggling with my ED but I haven’t been throwing up “enough” recently to be qualified for a parity diagnosis…Should I:
a) start throwing up more often before I start therapy again
b) resign myself to the maximum number of sessions allowed by my insurance
c) lie
d) all of the above
e) none of the above

Hmmm. The machinations we go through…

posted on February 27th, 2008 at 6:31 pm

5 On February 27th, 2008, Tabby said:

I think you mean “vernacular” or “dialect” — “dialectical” is a philosophy term.

I’ve had the same experience as the above posters with being diagnosed. In order to qualify for treatment I’d have to lose two lbs. What a great motivation! It’s especially frustrating in a country that just spent €75 million to combat obesity, but where eating disorders continue to be greatly under-diagnosed.

posted on February 27th, 2008 at 10:30 pm

6 On February 28th, 2008, Phledge said:

Emily’s right. The DSM-IV-R does not exclude prepubescent or postmenopausal women, or men, from a diagnosis of anorexia nervosa. One of my classmates was livid when our instructor neglected to mention the prevalence of anorexia in young men, especially gays; he used to be a personal trainer and had loads of guys who in retrospect clearly qualified for the diagnosis.

posted on February 28th, 2008 at 2:23 am

7 On February 28th, 2008, Rachel said:

I think you mean “vernacular” or “dialect” — “dialectical” is a philosophy term.

Nope, I meant dialectical. Dialectical as a noun is used in the philosophical sense; dialectical as an adjective refers to of dialect.

posted on February 28th, 2008 at 9:36 am

8 On February 28th, 2008, Nicole said:

I think one eating disorder that doesn’t get near enough attention is Exercise Bulimia. This is where you would do something like go to the gym and burn off 1200 calories, so you could eat those 1200 during the day. I did this for a while until when looking for exercise tips I found out it was unhealthy. (I didn’t have a eating disorder, I was just on a bad diet). I was trying to convince some women of this at work yesterday, and they didn’t want to hear it. The sad part is these are smart successful female engineers.

posted on February 28th, 2008 at 8:06 pm

9 On March 5th, 2008, Nadia said:

When I signed up with a new health insurance company recently, I noticed that my benefits specifically exclude any treatments relating to anorexia, bulimia, other eating disorders of any kind, or any physical or psychological treatments for obesity.

posted on March 5th, 2008 at 11:48 pm

10 On November 14th, 2008, D.P. Delellis said:

It’s sad that media has glamorized eating disorders , it think it’s also because they glamorize unhealthy and unrealistic ideas of beauty , look at how they promote those super skinny models and this disturbing trend is beginning to include the male models as well.

This must be corrected or else the consequences will be severe.

posted on November 14th, 2008 at 10:38 pm

11 On January 9th, 2009, Bulimia Nervosa said:

It is so hard to convince people who are suffering from this condition that they are harming themselves. A friend of mine in uni developed a seroius case of bolimia and we saw her getting caught in the whole thing and regardless of our efforts we failed to help her, which was really devastating to see…timely intervention and counselling is the key to make sure that people especially young girls don’t harm themselves in this manner

posted on January 9th, 2009 at 3:48 am

12 On April 3rd, 2009, Samantha Geyser said:

If the insurance company doesn’t doesn’t want to cover treatments related to eating disorders, I would have to say that it sounds discriminating. Don’t they classify these disorders as diseases?

posted on April 3rd, 2009 at 2:36 am

13 On September 22nd, 2009, Kris said:

I know it’s negative and not productive, but to whoever suggested “starved self syndrome” as a new name for eating disorders, fuck. you. Now that that’s out of the way, short of going residential at Renfrew (I live in Philly.) or somewhere similar, there are almost no insurance plans who will cover any part of your seeing a nutritionist no matter how much your PCP or therapist want you to go see one.

posted on September 22nd, 2009 at 9:35 pm

14 On August 28th, 2010, Stephanie said:

I have a 15 yr old boy with Asperger’s syndrome(high functioning autism), Bipolar and OCD. He does take medication that increases his appetite, however I am thinking his problem is more than that. One example is this, I served him a bagel bite meal for lunch one day, consisted of 9 little bagels and it literally took him 2 minutes to eat it. He does this all the time, sneaking into the kitchen and eating astronomical portions. We hide food and he prowls to find it and eats it. We have stopped buying junk food and snacks because of it and do not eat out. He will only eat celery and carrots for veggies and apples and bananas for fruit. Absolutely refuses anything else. I am concerned about his healthy and tried and tried and tried. I give him smaller portions and have for a long time but he sneaks it. He eats when we are asleep or not home or watching a movie. What can I do about this?? He’s obese and is going to get worse.

posted on August 28th, 2010 at 2:21 pm