Defining an eating disorder is more difficult than you might think. Increasingly, research is focusing on people who slip through the diagnostic cracks. Diagnoses like anorexia nervosa and bulimia have strict criteria, and patients need to fit a certain number of symptoms to get an official diagnosis. However, as many as 75.38% of adults with an eating disorder, according to a study published in The International journal of eating disorders in 2012, don't fit a precise diagnosis. These conditions are known as eating disorder not otherwise specified (EDNOS), or other specified eating disorders and feeding disorders (OSFED). Having an eating disorder outside of typical labels can make getting the right treatment hard.
"People with OSFED often believe that just because they don't meet the full diagnostic criteria for a specific eating disorder diagnosis, it means they are not sick enough or that their disorder is somehow not valid," Christine Knorr LCSW CEDS, a social worker and licensed eating disorder therapist, tells Bustle. (EDNOS was the original definition in the 1990s, but practitioners now use OFSED.) "The truth is, human beings are complicated, and their behaviors or symptoms often do not fit into a neat box or category."
"This is not a question of degree — OSFED can be every bit as severe as any of the more well-known diagnoses," Dr. Lauren Muhlheim Ph.D., a psychologist and certified eating disorder specialist, tells Bustle. OSFED simply doesn't tick all the boxes for other diagnoses. A meta-analysis of 36 different studies published in JAMA Psychiatry in 2011 found that people with OSFED have around the same mortality rates as those diagnosed with bulimia, and only slightly less risk of death than people with anorexia nervosa.
Some medical experts argue that the definitions for anorexia, bulimia and other eating disorders are too strict, and that people diagnosed with OSFED should be diagnosed with other illnesses. A study published in 2010 in Pediatrics noted that being diagnosed as having OSFED or EDNOS can delay treatment even though the symptoms can be severe or life-threatening. "More people are diagnosed with OSFED than any other eating disorder. Any behavior that interferes with a person's ability to function normally is serious enough to get help for," Knorr says.
All of these behaviors are potentially dangerous and can have serious medical and psychological consequences.
Symptoms of OSFED are wide-ranging and can cover a lot of different behaviors. Dr. Muhlheim tells Bustle that there are many ways in which people with OSFED can fall just shy of official parameters. People who fulfill all the symptoms of anorexia nervosa but aren't underweight are OSFED patients, for example, as are people who purge their food without bingeing beforehand, or anybody who has experienced symptoms for less than three months. "OSFED also includes people who have some features of anorexia nervosa and bulimia nervosa combined in subtly different ways," she says.
Psychological symptoms of OSFED can include preoccupation with thoughts about food or body image, anxiety around food. Other behaviors that can indicate OSFED are chronic dieting, avoidance of other people, vomiting, binge-eating, exercising while ill or injured, or using medications to interfere with weight and digestion. "All of these behaviors are potentially dangerous and can have serious medical and psychological consequences," Dr. Muhlheim says.
The physical signs of OSFED depend on the particular kind of disordered eating that's occurring. Concentration, body temperature, sleep, balance, teeth, skin, hair, and immune function can all be affected. NEDA notes that people who menstruate can also show cycle irregularities if they have OSFED, and that sometimes laboratory tests can show abnormal thyroid and hormone levels and a slow heart rate.
A lot of the treatments for other eating disorders can be used for OSFED with great success. "It's treated in the same way any other eating disorder is treated: usually a combination of cognitive behavioral therapy (CBT), dialectical behavior therapy (DBT), and family therapy," Knorr tells Bustle. In many cases, she says, people eat meals with a therapist present, to help them manage their anxiety around food and get enough nutrition. A study published in 2018 in European Psychiatry found that people with OSFED benefited just as much as people with defined eating disorders from cognitive behavioral group therapy, though there was a higher drop-out rate. Medicine's understanding of OSFED is continually evolving, but experts have solid strategies for lasting help and recovery.
If you or someone you know has an eating disorder and needs help, call the National Eating Disorders Association helpline at 1-800-931-2237, text 741741, or chat online with a Helpline volunteer here.
Arcelus J, Mitchell AJ, Wales J, Nielsen S. (2011) Mortality Rates in Patients With Anorexia Nervosa and Other Eating Disorders: A Meta-analysis of 36 Studies. Arch Gen Psychiatry. 28(7):724–731. doi:10.1001/archgenpsychiatry.2011.74
Le Grange, D., Swanson, S. A., Crow, S. J., & Merikangas, K. R. (2012). Eating disorder not otherwise specified presentation in the US population. The International journal of eating disorders, 45(5), 711–718. doi:10.1002/eat.22006
Peebles, R., Hardy, K. K., Wilson, J. L., & Lock, J. D. (2010). Are Diagnostic Criteria for Eating Disorders Markers of Medical Severity? Pediatrics, 125(5). doi: 10.1542/peds.2008-1777
Riesco, N., Agüera, Z., Granero, R., Jiménez-Murcia, S., Menchón, J., & Fernández-Aranda, F. (2018). Other Specified Feeding or Eating Disorders (OSFED): Clinical heterogeneity and cognitive-behavioral therapy outcome. European Psychiatry,54, 109-116. doi:10.1016/j.eurpsy.2018.08.001