As I field inquiries from people seeking help for their eating struggles, I often hear “I’m not thin enough to have an eating disorder.”   The individual might even add something like, “… and I’m probably not sick enough to deserve treatment.” I’ve been running a treatment center for eating disorders for over a decade and consistently, the majority of client population falls within a normal weight range.  We do treat restrictive eating disorders (like anorexia) and, in some cases, with restriction, there is extreme weight loss resulting in an obviously emaciated appearance. But there can also be extreme weight loss on a larger frame that results in a normal weight physical presentation.  Further we often we see restricted eating – even severe restricted eating – with minimal or no weight loss. So how one looks says nothing about their suffering… and whether or not they need help. In this week’s blog, I want to address Atypical Anorexia, a form of anorexia in which the individual experiences all the core features of anorexia but with weight that is at or above a normal range.

“You don’t have to look sick to be sick.” This phrase was aptly penned by a young woman named Lucinda who shared her battle with atypical anorexia on an Australian blog site, My Body and Soul. In atypical anorexia nervosa, sufferers present with the main, core features of anorexia nervosa like restrictive eating behaviors and extreme fear of gaining weight but without the corresponding acute weight suppression (weight loss) that you might see in “typical” AN.  As a result of this presentation, many anorexia sufferers go undiagnosed or untreated.

Often, an individual struggling with atypical anorexia nervosa will report severe restrictive eating patterns, ritualized behaviors (such as cutting food into tiny pieces), rigid rules, routines and obsessions. Since the individual may not present with an emaciated or skeletal frame, sufferers themselves may not recognize that they are sick and loved ones may never fear the situation is dire enough to intervene. It is for this reason that this writer, Lucinda, made her case that one does not have to look sick to be sick.

Lucinda hit her rock bottom during college when her restrictive eating patterns and ritualized behaviors took over her life. She did experience weight loss – just not the kind of dramatic weight decrease one would expect with such a restricted diet – and began to struggle with gastrointestinal issues. She writes “I looked thinner than ever and my bowels stopped working properly because of my disordered eating patterns and abuse of laxatives. Mum took me to hospital and I underwent a colonoscopy and an endoscopy, as the doctors thought I had a blockage. Nothing was found and I lived in agony for weeks on end. My mind was also a mess. I was constantly suffering from anxiety attacks and was often frustrated, confused, upset and so petrified of putting on weight.”  To Lucinda – and apparently also to those treating her and overlooking the glaring eating disorder driving her suffering – the thought was, “How could I have an eating disorder? I wasn’t nearly skinny enough.”

After more suffering and inconclusive medical tests, Lucinda finally shared with her mother the extent of the emotional torture she had been enduring in relation to food and weight. She was admitted to a treatment facility where she received a diagnosis of PTSD and Anorexia.  Lucinda’s treatment focused in on normalizing her eating, stabilizing her weight and helping her to better understand and respond to her emotions. Now, in recovery, Lucinda shares her experience through her passion, writing, and completed her first novel, What’s Eating Lucinda.

For many years, the prevailing fourth edition of the Diagnostic Statistical Manual (the handbook used by healthcare professionals that presents the diagnostic criteria for mental health disorders) grouped all atypical or subclinical disorders under the heading of “Eating Disorder Not Otherwise Specified” (EDNOS). This category covered 6 presentations that did not fold neatly within one of the existing eating disorder like Anorexia or Bulimia. With the publication of the fifth edition of the DSM (the DSM-5), important updates to eating disorder criteria were made. By better integrating varying and different ED presentations, the DSM-5 has created space for disorders of eating that didn’t previously fold so neatly into existing categories and has helped countless individuals better understand their struggles.  EDNOS was renamed OSFED (Other Specified Feeding or Eating Disorder) in the DSM-5. With the DSM-5 we also saw the integration of Binge Eating Disorder as a full-fledged diagnosis; previously Binge Eating Disorder was considered another condition under the EDNOS category. The DSM-5 recognized the importance of subthreshold conditions where some but not all criteria may be met and atypical conditions. So there are now five specific OSFED subtypes:

  1. Atypical Anorexia Nervosa (i.e. anorexic features without low weight)
  2. Bulimia Nervosa of low frequency and/or limited duration
  3. Binge Eating Disorder of low frequency and/or limited duration
  4. Purging Disorder
  5. Night Eating Syndrome

Lucinda’s story reminds us that we must not let perceptions of a diagnosis (e.g. you must be skeletal to suffer from an ED) define our responses. If you or a loved one experiences difficulty around or preoccupation with food or weight, a consultation with a professional is appropriate and necessary – regardless of one’s body size.

References:

‘Nobody knew I was anorexic… not even me’. (2018, June 18). Retrieved June 22, 2018, from https://www.bodyandsoul.com.au/health/womens-health/nobody-knew-i-was-anorexic-not-even-me/news-story/e1f4696981b39e848ca38f2ba1400da8

Atypical Anorexia Nervosa: What Are The Signs and Symptoms. (2018, February 09). Retrieved from https://www.eatingdisorderhope.com/blog/atypical-anorexia-nervosa-signs-and-symptoms

Blog | Goodbye EDNOS, Hello OSFED | Jenni Schaefer. (2017, February 22). Retrieved June 28, 2018, from https://jennischaefer.com/blog/eating-and-body-image/goodbye-ednos-hello-osfed-subthreshold-and-atypical-eating-disorders-in-dsm-5/