Let's Give Eating Disorders a New Name

As Eating Disorders Awareness Week 2008 gets underway, I'd like to propose that we all consider giving eating disorders a new name.

There is now ample scientific evidence that these disorders are biologically based mental illnesses. Anorexia nervosa has a higher mortality rate than alcoholism or schizophrenia, and the cause of death is not always directly related to food intake or starvation. We know that DNA determines who is most likely to develop an eating disorder and who is not. We know that eating disorders are distress signals -- symptoms -- of much deeper and more complex patterns of personality, anxiety, and behavior.

So why does the media trivialize and marginalize an issue that affects more than 10 million people? Why do many insurance companies refuse cover these illnesses as they would, say, drug addiction or depression? I think the term "eating disorder" bears some of the blame, as it suggests the problem begins and ends with food.

As one woman recently wrote to me:

I hear young girls through grown women say, 'I wish I was anorexic - just for a week.' I remember being an adolescent and being obsessed with eating disorders. I would read everything about them at the library (we did not have the Internet), I would secretly read the ED section in our health books, and would read any magazine that had something about them on the cover. I wanted people to think I didn't eat (I did), and I thought it was symbolic of being good, in control. I wanted to be anorexic. Eventually it grabbed a hold of me and has not let go. Let's stop making it so glamorous.

I couldn't agree more. 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. It also reflects the difficulty of coming up with one label that applies to the full range of these conditions, especially when we consider factoids such as 1) most people who die of eating disorders do not die directly of starvation or obesity, but suicide; 2) weight is not always an indicator of an eating disorder; and 3) eating disorder behavior and thoughts often have nothing to do with food.

Suggested names included:

• Empty self syndrome
• Self-awareness escape condition
• "Undeserving" complex
• Sustenance Deprivation
• Maladaptive coping syndrome
• Dis-kinethesia syndromes (Dis-, meaning to undo, do the opposite, remove or free from, to deprive. Kinethesia meaning one's PERCEPTION of motion, weight, position, etc.)
• Genetic identity syndrome
• Self evaluated anxiety syndrome "S.E.A.S."
• Food-focused Disempowerment Disorders

I shared the full list with several friends, both in and out of the eating disorders field. We all agreed that it is likely impossible to find a single term to meaningfully encompass conditions as different as anorexia and bulimia and binge eating disorders. But, that said, we did find several that came close to describing the underlying reality and internal experience of all eating disorders, whatever their shape, size, or duration. That reality almost always involves a deeply distorted and disturbed sense of self.

These names do not wildly overlap with other broad conditions such as depression, anxiety, and personality disorders, and yet they also do not fasten on abnormal eating as the sole common denominator. Consider:

1. Metabolic Manipulation Dis-order (MMD)

2. Starved Self Syndrome (SSS)

3. "Undeserving" complex

4. Deprivation addiction

5. Feast or Famine Defense

These phrases truly represent "food for thought." I hope, at the very least, they will prompt you to think twice, or better yet speak up, the next time you hear someone joke about eating disorders. And feel free to share these alternative names with the next person you hear wondering why people with eating disorders don't just "gain (or lose) a little weight"!

Have a healthy, pro-active, and power-full Eating Disorders Awareness Week!