It took Autumn Whitefield-Madrano more than 20 years to seek treatment for her eating disorder. The writer was 9 when she started having symptoms, primarily binging, and 33 when she finally got help. When she did, the diagnosis surprised her. Whitefield-Madrano had EDNOS, or an "Eating Disorder Not Otherwise Specified."
"I went into treatment because I thought I had a binge eating disorder," she told The Huffington Post. "When they diagnosed me with EDNOS, I was confused. What did that mean?"
EDNOS is not widely known outside of mental health circles, but it is now the most common diagnosis given to those seeking treatment for an eating disorder.
"EDNOS captures people that don't really fit into anorexia or bulimia," explained Lara Gregorio, manager of the National Eating Disorder Association's States for the Treatment, Access, and Research Program. "Most people were falling into EDNOS -- 50 percent of diagnoses, which means more people were not fitting into a category than the ones that were."
But when the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), often known as the bible of psychiatry, comes out, that will change.
Though the final diagnostic criteria will not be published until May, the American Psychiatric Association has made many public already. A girl or woman will no longer have to lose her period in order to be diagnosed with anorexia, and the number of purging episodes an individual must have per week in order to be considered bulimic will decrease. The newest version of the manual will also recognize binge eating disorder for the first time, defining it as recurring episodes of excessive eating marked by feeling a lack of control.
"EDNOS included people with binge eating disorder," said Dr. Timothy Walsh, chair of the eating disorders workgroup for the DSM-5. "It was a really heterogenous mix, and therefore, not adequate for anybody," he continued, explaining that the diagnosis didn't address individual patients' conditions specifically enough to guide treatment. "Patients felt 'disrespected.' They had a serious problem that was interfering with their lives, and yet DSM-4 appeared to not be taking their problem seriously." Many patients also had difficulty getting insurance to cover treatment for their eating issues.
At a numbers level, the changes mean that far fewer people are likely to be diagnosed with EDNOS once DSM-5 comes out. The category will still exist, Walsh explained, but it will be renamed (an earlier proposed title, made public during one of several open comment periods, was "Feeding and Eating Disorders Not Otherwise Classified").
A study published online in the International Journal of Eating Disorders in July 2012, found that the changes around anorexia, bulimia and binge eating disorder will "substantially" reduce the number of EDNOS cases. Using DSM-4 criteria, researchers in Portugal found that 73 percent of a sample of female high school and college students qualified for a diagnosis of EDNOS, while 15 percent were anorexic and 12 percent were bulimic. Using the updated DSM-5 criteria, only 50 percent of the participants would fall into the EDNOS category, while 18 percent would be considered anorexic, 15 percent bulimic and 16 percent would have a binge eating disorder.
The benefits of the new criteria could extend beyond more precise diagnoses. The revised guidelines could also mean that insurance companies pay for more patients' care.
"It's a positive change from a reimbursement perspective as well as a patient's," said Andrea Goldschmidt, an assistant professor of psychiatry and behavioral neurosciences at the University of Chicago. "Before, you just had a vague eating problem. Now, you have a diagnosis that is recognized by the community and that you can get treatment for."
Patients with eating disorders have long struggled to get adequate insurance coverage for their conditions, said Gregorio of the National Eating Disorder Association. Gregorio explained that only 23 states in the U.S. have mental health parity laws -- which require insurers to provide the same level of coverage they do for physical disorders and diseases -- that include coverage for eating disorders.
Even in states with those laws, the "majority of people with EDNOS were denied insurance coverage because they didn't fit into classic categories," she said. "Eating disorders cost around $30,000 a month to treat, and that's not including secondary health conditions. That doesn't include treating osteoporosis, or liver failure -- that's just treating the eating disorder."
Even for those whose insurance does cover treatment, like Whitefield-Madrano, the category can be a source of confusion after years of struggling. It took some explaining to help her understand that the EDNOS diagnosis did not mean that her eating disorder was insignificant or "unreal," she said. Though she ultimately came to believe the diagnosis helped her by forcing her to see that nothing about her eating problems was black and white, it also made her feel like a failure, she wrote in Marie Claire.
"I don't tend to talk to patients that much about labels," Goldschmidt said. "Hearing that you have a diagnosis for a 'formal' eating disorder could be a positive, or it could be a negative in terms of stigma. My hope is that it will be a positive -- that people will know they are not suffering alone."