Arianna had an eating disorder for a few years before getting a diagnosis. “It’s all so obvious in hindsight,” says her mom, Renee. “She had all the classic symptoms of an eating disorder except she didn’t look like she had an eating disorder. I just didn’t know what to look for.”
Renee’s not the first parent to miss an eating disorder due to the biases and assumptions that drive our cultural understanding of eating disorders. Most people assume that an eating disorder has a “look.” But in fact, the majority of eating disorder diagnoses are not for anorexia. They’re for Other Specified Feeding and Eating Disorders (OSFED). This guide will help you understand OSFED, a serious and often-missed eating disorder.
OSFED is the most common eating disorder. The symptoms cause significant distress but do not fit into the strict criteria for anorexia, bulimia, Avoidant and Restrictive Food Intake Disorder (ARFID), or binge eating disorder.
The advantage of a catchall OSFED category is that people can get a diagnosis for an eating disorder even if they don’t meet the narrow criteria for other disorders. The drawback is that even though it’s very common, few people outside of the eating disorder community know what it is. It also means that people who have very different symptoms get grouped together in a category despite needing very different care.
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Exploring weight bias in eating disorder treatment
Among other things, OSFED is used to categorize people who meet all the criteria for anorexia except low body weight. Anorexia is the only mental disorder that carries BMI criteria. To get diagnosed with anorexia you must have a “significantly low BMI.” But BMI is a population tool that was never meant to be used to determine individual health.
BMI (body mass index), which is based on the height and weight of a person, is an inaccurate measure of body fat content and does not take into account muscle mass, bone density, overall body composition, and racial and sex differences.Medical News Today
The problem with BMI as a diagnostic for an eating disorder is that if someone was born and has lived their life in the 100th percentile for weight and drops to the 50th percentile, they are very ill, but they don’t technically have a “significantly low BMI.”
Assumptions about weight and eating disorders can slow down diagnosis. That’s what happened to Renee. “I saw all the signs of an eating disorder,” she says. “She was restricting her food, and definitely over-exercising. I could tell she had a negative body image, though she didn’t talk about it with me very often. But when I tried to talk to her pediatrician about it, the doctor was so pleased about Arianna’s weight loss and fitness routine that he brushed me off.”
Renee is not alone. Many parents who talk to doctors find themselves frustrated and feeling dismissed because their child doesn’t fit the criteria for anorexia or bulimia. Nonetheless, they know that something is wrong. They suspect an eating disorder, but the fact that few people know about OSFED gets in the way of diagnosis.
OSFED: a misunderstood eating disorder
OSFED is poorly understood and recognized in our culture, yet it constitutes the majority of eating disorder diagnoses. When it was called by its previous name, EDNOS, more than half of all patients seen at eating disorder treatment centers were in this catchall category.
Since OSFED is a broad category, it is often misinterpreted as being less serious. But studies have shown that people with OSFED experience eating pathology and medical consequences that are just as severe, often even more severe than those who are diagnosed with anorexia or bulimia.
In fact, one study found that 75% of people who were diagnosed with EDNOS (now called OSFED) had comorbid psychiatric disorders and 25% had suicidal thoughts. Professionals say that people who are diagnosed with OSFED need the same level of treatment and support as those with anorexia or bulimia. And untreated OSFED often leads to a future diagnosis of anorexia, bulimia nervosa, or binge eating disorder.
A lack of understanding
Renee kept pushing for answers, and Arianna was diagnosed with OSFED about a year ago. Aside from the delay in treatment, Renee is frustrated by friends and family who don’t understand. “It’s really invalidating when my friends assume that because she doesn’t have anorexia or bulimia it’s somehow not serious,” she says. “And if I feel invalidated, I can only imagine how she feels!”
Most people assume that when someone has an eating disorder it must be anorexia. But less than 6% of people with eating disorders are medically diagnosed as “underweight.” If parents and loved ones only think of eating disorders as having the look of emaciation, we risk under-diagnosing and under-treating the majority of eating disorders.
Weight is a very tricky element of eating disorder diagnosis and treatment. Parents can’t assume that a child’s weight alone is a sign of health or illness without careful evaluation of emotional and behavioral symptoms that will more reliably indicate an eating disorder. That’s why I created this guide to OSFED, a poorly-understood eating disorder.
One key is to recognize the behavioral and emotional signs that typify most eating disorders.
Behavioral symptoms of eating disorders
Here are the behavioral symptoms that commonly cross across all eating disorders:
- Different eating behavior, particularly skipping meals, eating less in public, sneaking food, lying about food, etc.
- More emotional outbursts like yelling or crying, or emotional withdrawal
- Marked changes in social behavior like being more or less socially active, getting a dramatically different friend group, etc.
- Body checking and monitoring with a scale, mirror, reflective surfaces, etc.
- Wearing tighter or looser clothing and/or changing outfits frequently because nothing seems right
- Talking about their body and other people’s bodies, what they’re eating, what they weigh, etc.
- Sudden interest in “health” foods, nutrients, carbs, sugar, and fat
- Increased exercise and a lack of flexibility about exercising (e.g. I have to exercise to feel OK)
- More interpersonal conflicts and social isolation
Emotional symptoms of eating disorders
Here are the emotional symptoms of most eating disorders:
- A tendency towards perfectionism and/or binary (black and white) thinking patterns
- History of trauma
- Anxiety and/or depression
- Lack of emotional regulation skills to manage feelings of stress and anxiety
- A sense of being different or “other”
- Low self-worth
- Strong desire to be “good” as defined by society
- Defensiveness, particularly when confronted about unusual eating behaviors
- Irritability and moodiness
Even if your child never meets the diagnostic criteria for an eating disorder, these behavioral and emotional signs are enough to warrant therapy. This can help prevent a future eating disorder.
What to do if you suspect OSFED
This guide will help you spot whether your child has an eating disorder and understand OSFED in particular. If you suspect your child has an eating disorder, please follow these steps:
- Take a deep breath, and remind yourself that this is hard, but you can handle it. Your emotional reaction is understandable, but you’re going to need a lot of self-compassion to get through this.
- Contact your child’s physician and have them physically evaluated to check for any physical symptoms of an eating disorder.
- Schedule an appointment with a therapist and/or dietitian who specializes in eating disorders. These are people who are trained specifically to diagnose and treat eating disorders. Particularly with OSFED, you want an eating disorder specialist, not a general therapist or dietitian.
- Educate yourself by learning as much as you can about eating disorders in general and your child’s specific symptoms.
- Find out how you can change your own home environment to support your child’s recovery. Eating disorders are highly responsive to social environments, so you will need to make changes to foster change.
Catching up with Renee
Renee says that Arianna is doing well with treatment. “I wish we had started earlier, but I’m also glad I pushed so hard for the diagnosis,” she says. “She’s actually been doing really great, and our whole family has adjusted to support her mental health. It’s made a difference for all of us. We’re all feeling better these days!”
I know that having a child with any type of eating disorder is hard, and I hope this guide to OSFED is helpful.
Ginny Jones is on a mission to change the conversation about eating disorders and empower people to recover. She’s the founder of More-Love.org, an online resource supporting parents who have kids with eating disorders, and a Parent Coach who helps parents supercharge their kid’s eating disorder recovery.
Ginny has been researching and writing about eating disorders since 2016. She incorporates the principles of neurobiology and attachment parenting with a non-diet, Health At Every Size® approach to health and recovery.
Ginny’s most recent project is Recovery, a newsletter for deeply feeling people in recovery from diet culture, negative body image, and eating disorders.
For privacy, names and identifying details have been changed in this article.