Atypical Anorexia: How Labels Affect the Eating Disorder Experience
Written by CCTC Staff Writer
We use them everywhere: from relationships to clothing to signs to diagnoses, labels govern how we perceive and interpret things. In some instances, like allergen warning signs, labels are useful. But other labels, such as "atypical anorexia," may not serve us so well.
Keep reading for:
What atypical anorexia is
Why this label, and eating disorder labels in general, exist
The benefits and drawbacks of labeling different eating disorder diagnoses
How people with "atypical anorexia" are treated differently than people with "typical anorexia"
What to do if you are at a higher weight and suffer from an eating disorder
But first: nothing, not weight, shape, size, medical status, or any other physical characteristic, defines an eating disorder. Eating disorders are mental illnesses that only sometimes include physical side effects like weight loss and medical complications.
What is "atypical anorexia?"
Defined as The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines atypical anorexia nervosa (AAN) as “having all of the criteria for anorexia nervosa, except that despite significant weight loss, the individual’s weight is within or above the normal range.”
Basically, the idea is that atypical anorexia is the same as “typical” anorexia, except that sufferers of this mental disorder have a BMI of more than seventeen, putting them at a “normal” or “healthy” weight.
Why Eating Disorder Labels Exist
Eating disorder diagnoses act as labels to explain what eating disorder thoughts and behaviors a patient has.
For example, individuals who are diagnosed with bulimia struggle with some form of purging, while those with binge eating disorder do not use purging behaviors.
Treatment providers can look at that diagnosis and understand what kind of behaviors need to be addressed. In some cases, a diagnosis can inform providers about the best treatment strategies to address the underlying issues.
If you are diagnosed with a form of eating disorder (and unfortunately, a formal diagnosis is a privilege) the type of eating disorder sort of follows you around for the duration of treatment.
The type of eating disorder you are diagnosed with (and all diagnoses come from the DSM-V) is sent to future treatment providers and insurance companies, which can cause problems.
Why the Atypical Anorexia Label Exists
The term Eating Disorder Not Otherwise Specified (EDNOS) was used in the fourth edition of the DSM to describe any eating disorder that did not “nicely fit” into any distinct eating disorder category.
Now, in the fifth edition of the DSM, Other Specified Feeding/Eating Disorder (OSFED) has replaced the term EDNOS. The change happened because clinicians created more distinct, diagnosable eating disorders, including binge eating disorder and Avoidant/Restrictive Food Intake Disorder (ARFID).
On the surface, atypical anorexia is included as a subtype of OSFED because it doesn’t fit the “typical” diagnostic criteria of anorexia that has been used for years.
But at its core, the atypical anorexia diagnosis is an obvious show of weight-bias fatphobia in the healthcare field.
Despite experiencing the exact same cognitive symptoms, psychosocial impairment, and (often) the same amount of total weight loss, people who present as straight sized, overweight, or obese receive a different diagnosis.
The “atypical” label creates a sense of otherness and inferiority in those suffering with anorexia. In many cases, treatment providers and insurance companies treat those with AAN differently than people with “typical” anorexia.
How the Atypical Anorexia Label Impacts Eating Disorder Sufferers
Despite being a mental illness, physical features like weight, BMI, and lab tests dominate the eating disorder diagnosis and treatment world.
What does the hyperfocus on weight do to those who present with a restrictive eating disorder at a higher weight?
Invalidation
There is an alarming amount of imposter syndrome when it comes to eating disorders. Individuals believe that if they don’t fit the eating disorder stereotype, they are not sick. If they are not emaciated, they do not deserve help.
This experience is even more prevalent in individuals diagnosed with AAN, despite the fact that AAN is more common than “typical” anorexia.
People with AAN are invalidated from within, as their eating disorder tells them that they are “still fat,” so they should continue using eating disorder behaviors.
They are also invalidated from many external sources, including treatment providers and their fellow eating disordered peers.
Related: Do you think you're not sick enough to have an eating disorder? Here's what to do when you feel invalidated in ways like this.
Embarrassment and Isolation
Unfortunately, most eating disorder sufferers on social media, in treatment programs, and in the news media are thin. People with straight sized or larger bodies are not widely represented in the world of eating disorders.
Many people in larger bodies feel that they do not deserve to be in healing spaces, or that they even have a problem. They feel too embarrassed to admit that they have difficulty eating when a larger body does not seem to reflect the physical “look” of a malnourished body.
Related: Eating disorders don't have "a look." These are the dangers of eating disorder stereotypes.
Delay in Asking for Help and Diagnosis
Invalidation, embarrassment and isolation keeps many sufferers from reaching out for help.
This is especially true when people in larger bodies are ignored when they open up about their eating disorder.
Individuals with AAN have vividly described their dangerous weight loss practices to their doctors and loved ones. Instead of being met with concern, or being referred to an eating disorder specialist, doctors have ignored their concerns, and loved ones applaud their efforts.
Studies have also shown that even professionals in the mental health field are less likely to diagnose someone with anorexia if they are at a clinically normal or higher weight.
Less Access to Treatment
AAN is at least as common, if not more common, than clinically defined anorexia
Despite this, less people with AAN receive treatment than those with clinically defined anorexia
People with AAN spend less time in treatment, despite showing the same level of eating disorder cognitions and behaviors
There is a huge treatment gap due to weight-bias in eating disorder diagnosis and treatment
Early intervention improves the likelihood of full and lasting recovery.
Yet, the majority of those suffering with anorexia do not receive treatment until much later on. Others do not receive treatment at all.
A lot of treatment gatekeeping has to do with not receiving a diagnosis in time, and not finding an eating disorder specialist who understands that you can be healthy at any size.
Restricting and limiting access to treatment also comes from insurance companies’ diagnosis and weight-bias.
This case study follows the treatment experience of one longtime eating disorder sufferer who has been both clinically underweight and overweight. At both points, they had lost a significant portion of their body weight. They also experienced the same cognitive, social, and psychological impairment in a larger body as they did in a smaller body.
But when they went into intensive treatment at a higher “starting weight,” this suffering individual’s insurance company covered significantly less time in treatment — three months when they were clinically underweight, and two weeks when they were overweight.
Insurance companies often do not take into account anything more than numbers and diagnoses when they decide whether or not to cover someone’s treatment, and for how long they receive treatment.
Note: Those diagnosed with bulimia, binge eating disorder, and Other Specified Eating or Feeding Disorder (OSFED) report inadequate access to treatment as well. Diagnosis-bias, along with weight-bias, is heavily prevalent in insurance companies.
Related: For more on the effect of weight stigma on eating disorder treatment and recovery, read this.
Increased Risk of Medical Consequences of an Eating Disorder
Medical complications of restrictive eating disorders are associated with clinically underweight individuals.
But studies have shown that people suffering with AAN are just as likely, if not more likely, to suffer medical complications compared to those who are diagnosed with “typical” anorexia.
These complications include malnutrition, bradycardia, hypotension, refeeding syndrome, and longer hospital stays.
Medical complications are related to a person’s total amount of weight loss and the total span of time they spent losing weight, not the actual number that shows up on the scale.
And since people in larger bodies overwhelmingly face more obstacles to treatment than their smaller-bodied peers, they suffer longer and experience greater total weight loss than those who were already clinically normal/underweight before the onset of their eating disorder.
But again — and we cannot stress this enough — you do not need to show any physical medical complications of an eating disorder to have a valid eating disorder.
Discrimination While in Eating Disorder Treatment
Several individuals have noted the forms of weight bias and weight-based discrimination throughout their treatment experiences.
Weight-biased treatment practices include:
Not being placed on a weight-gain meal plan despite using dangerous weight-suppression behaviors
Treatment plans that included diet and exercise regimes
Replacing some purging behaviors, like vomiting and laxative use, with more socially acceptable forms of purging (i.e. overexercise)
Providers that did not address their own thin privilege and fatphobia
Not being taken seriously throughout treatment programs
Not being referred to higher levels of care when outpatient treatment was not aggressive enough
In several studies, people who were not clinically underweight but actually received eating disorder treatment reported that their treatment providers were more concerned about maintaining or even reducing their weight than stopping eating disorder behaviors.
In many cases, patients were actually more inclined to use behaviors as a result of weight-focused eating disorder treatment. Sufferers were constantly invalidated about their eating disorder as they were treated differently than their peers, despite struggling with the same issues.
Are you a clinically “normal” or higher weight and have an eating disorder? Here’s what to do.
Weight, BMI, and the atypical anorexia diagnosis — although deeply flawed in many ways — are still used to indicate the presence and severity of an eating disorder.
Until every treatment and insurance provider is educated about weight-inclusivity and the Health at Every Size (HAES) philosophy, the unfortunate reality is that you will have to fight a little harder for the life-saving treatment you need.
1. Don't wait to ask for help.
You might rationalize eating disorder behaviors by saying “it’s no big deal, it’s not like I’m underweight.”
But as you can see, the number on the scale today does not tell the story of your struggle. And the longer you put off recovery, the worse your illness will get.
So don’t wait until you think you’re “sick enough” to ask for help — if you are struggling with eating disorder thoughts and behaviors now, then you are already sick enough.
2. Do your research.
Your PCP may not be knowledgeable about eating disorders. Even if they are, they may have weight-bias that makes it harder for you to get a diagnosis and proper treatment.
So do your research first. Find someone who understands weight-inclusive treatment and discuss your problems with them.
They can also guide you to HAES informed treatment programs if you need more support than you can get in an outpatient setting.
Related: This is the kind of treatment approach you should look for when you consider eating disorder treatment.
3. Advocate for yourself.
All of your treatment providers should take your eating disorder just as seriously as anyone else’s.
But if they don’t, you have to advocate for yourself, and find someone who can advocate for you in the areas where you can’t (like making treatment recommendations to insurance providers concerning your treatment needs.)
If they don’t understand weight-inclusive treatment, then unfortunately, you might have to be the one to educate them.
4. Find your support system.
Your support system should include family, friends, and treatment providers who:
Understand that eating disorders are not a physical illness, but a mental one
Support weight gain if you need it, even if you are straight sized or overweight before starting recovery
Related: This is why anyone with a restrictive eating disorder needs to gain weight, no matter what their "low weight" is.
5. Remember that your recovery is about you.
No two people experience eating disorders in the same way.
This is especially true in today’s fatphobic society, where larger people are encouraged to lose weight at any cost.
But your recovery has nothing to do with the size of anyone around you, and it certainly has nothing to do with any fatphobic treatment providers you run into.
Your recovery is about repairing your relationship between your mind and body. This may mean weight gain, even if you are not clinically underweight when you start recovery.
Related: Here is how to maintain motivation in eating disorder recovery.
No weight or diagnostic label can tell the story of your eating disorder experience.
No matter how much you weigh right now, and no matter what “label” someone has imposed on you, your struggle is unique and valid.
And you deserve to start recovery today, just like anyone else who struggles with any type of eating disorder.
If you or a loved one is suffering from an eating disorder, take the first step today and talk to someone about recovery or simply learn more about the holistic eating disorder recovery programs we offer.