In 2014, Jordan Younger confessed her diet was taking over of her life. The blogger and vegan guru diagnosed herself with orthorexia nervosa, a new kind of eating disorder where an obsession with healthy eating escalates to cutting out entire food groups and building days around meals. Those suffering from the condition may refuse food they don’t prepare themselves, even if it’s prepared by loved ones. Some extreme cases crescendo to malnourishment.

The media coverage of Younger’s confessional essay might make one think orthorexia is a well-established disease. It’s not. While orthorexia nervosa captivates the public consciousness, it’s only just permeating the scientific consciousness and is not officially recognized by the medical community. Research is disjointed, and scientists can’t agree on a definition or criteria to diagnose it. Eating disorder specialists recognize it, and the National Eating Disorder Association has a webpage about it, but right now no one can be officially diagnosed with orthorexia. Instead, people may diagnose themselves after its mentioned by a doctor, or just by learning about it through cultural osmosis.

Jordan Younger

The Blonde Vegan

To much of the medical community, orthorexia is merely an alternative medicine-flavored quirk of anorexia, bulimia, or obsessive-compulsive disorder (OCD). But a small contingent of researchers see orthorexia as an eating disorder in its own right, in need of research and targeted treatment, and want to establish it as a true diagnosis. They view potential orthorexics as an underserved group, falling through the cracks of the mental health care system because they don’t fit neatly into a box.

In a slow-motion battle taking place through studies, reviews, and letters, they’re attempting to refine the diagnostic criteria and the definition of orthorexia. These researchers are worried that if they don’t, orthorexia will either become a way to pathologize healthy eating or merely fade into memory—a fad disease for fad diets.

Steven Bratman used to believe food was medicine. He believed the right diet could cure most ailments, but as hard, scientific research started to disprove his theories, he grew disillusioned. Eventually, he abandoned his ideas in favor of those supported by science.

He was a practicing alternative medicine doctor when he originally coined the term “orthorexia” in an essay in the non-academic Yoga Journal published in 1997. In it, he describes patterns of behaviors he’s observed over the years—including in himself—where healthy eating devolves into obsessive behavior and a fixation on “extreme dietary purity,” or what he calls “kitchen spirituality,” starts “to override other sources of meaning.” He wrote about the topic for a few years, gave lectures and did media interviews, but never pursued it as a research topic.

In 2004, a team of Italian researchers came across Bratman’s orthorexia writings and began to study the disorder in Italy. In one of Bratman’s essays, he posed 10 questions intended to help the reader think about eating habits. The Italian group took six of Bratman’s questions, added nine of their own, and declared it a diagnostic tool. They called it the ORTO-15.

Bratman says the original questionnaire was never designed to be diagnostic or useful in research. The Italian researchers did not reply to the Daily Dot’s request for comment.

“Their perspective was that it was a pathology to believe in a nonstandard diet,” such as veganism or gluten-free diets, he said. Though many people follow such diets, they all become orthorexic according to the ORTO-15, Bratman said. With that tool, the proportion of people suffering from orthorexia ranges anywhere from 7 percent of the general population of Italy to a whopping 86 percent in ashtanga yoga practitioners in Spain.

“The basic way that we conceptualize orthorexia is a hybrid between an eating disorder and OCD.”

Bratman attributes those high numbers to the ORTO-15 and its derivatives’ fixation on eating behaviors—concern with nutrition, purity, and preparation. The ritualistic nature of the behaviors enhances the healthy and healing promises of these diets, Bratman said. But while the extreme health claims some diets make are unrealistic, that doesn’t make subscribing to them a disease, Bratman said. “If a person thinks veganism will protect them from heart disease, and you think they’re crazy, that’s just a disagreement,” Bratman said. “You shouldn’t pathologize a disagreement.”

Bratman didn’t realize his non-diagnostic questionnaire had turned into the ORTO-15 and the “Bratman orthorexia test,” until 2014—after numerous studies using the questionnaires were published. Most of the research came out of small, sometimes non-English journals in Europe, Australia, and South America, unnoticed by the American scientific community. In Bratman’s opinion, many researchers were on the “conventional side of a culture war,” creating a disease out of the adoption of diet theories not backed by conventional science.

“They had no insider knowledge about what it’s like to believe in alternative health,” Bratman said. But he did. That’s when Bratman set out to right the wrongs he perceived in the research.

Around 2012, Thomas Dunn, a neuropsychology researcher at the University of Northern Colorado, found himself at the center of the orthorexia debate. After stagnating in his research, he pivoted to neuropsychological research in hospitals. There, he encountered an orthorexic patient who was subject of one of the few American case studies on the disorder.

The patient initially began his diet to alleviate constipation, but over time, his concerns shifted toward the purity of his food, and he started restricting his diet until he was hospitalized for malnourishment.

“I was really floored by it. I felt I knew people who had kind of the condition. It was clearly causing problems for people, but it seemed like the U.S. wasn’t aware of it,” Dunn says.

GIF by Max Fleishman

Dunn says that he was initially on periphery of the case, but when the primary physician became too busy to address the study’s reviews and edits, Dunn took over. He and his colleagues diagnosed the patient with orthorexia despite the disease’s absence from the Diagnostic and Statistical Manual (DSM)—the handbook of diseases and disorders of the mind that social workers use to diagnose patients.

Bratman, who wasn’t involved with the case study, said that Dunn and his colleagues had a tough time getting the article through the peer review process. Anonymous experts tasked with assessing the article’s scientific rigor questioned the validity of the diagnosis. Though it wasn’t the first case report of orthorexia, they were still unconvinced. Some reviewers suggested the patient merely had anorexia nervosa, obsessive compulsive disorder, or both.

Both Bratman and Dunn confess that orthorexia has commonalities with other recognized eating disorders. Because American culture tends to equate health with thinness, orthorexia often mimics anorexia nervosa, while the ritualistic preparations and moralization of food is harkens to the obsessions of OCD: Cutting food an exacting fashion to optimize its health benefits doesn’t seem much different than washing one’s hands over and over to avoid contamination. These shared traits lead some experts to believe orthorexia isn’t a disorder in its own right.

Tom Corboy, a therapist and executive director of the Obsessive-Compulsive Disorder Center of Los Angeles, thinks orthorexia is really OCD—with elements of an eating disorder.

“The basic way that we conceptualize orthorexia is a hybrid between an eating disorder and OCD,” Corboy says. “It certainly is disordered eating, but on another level it’s important to point out that the focus of the obsession is not on weight or appearance, but—for lack of a better term—a fear of contamination.”

Corboy says that, unlike mental health generalists and eating disorder specialists, OCD specialists in the U.S. have been aware of orthorexia for some time. He said eating disorder centers often refer patients with orthorexia to his clinic.

His group uses cognitive behavioral therapy—an approach where patients learn to critically assess their obsessive thinking and re-learn their relationship with the object of their obsession. For a patient with orthorexia, they use this approach to help the patient un-learn their superstitions toward food, while also gradually exposing them to previously off-limits foods. Corboy said this approach would work regardless of whether orthorexia is categorized as an eating disorder or as an off-shoot of OCD.

“Personally, I don’t care if it’s considered an eating disorder or an OCD. We’re going to do what works when it comes to treatment,” he said.

That’s assuming, of course, orthorexia gets into the DSM at all.

Dunn and Bratman recently published a paper defining and offering new diagnostic criteria for orthorexia. The paper, published in the journal Eating Behaviors, addresses the difference between a pattern of behavior in eating and the way such patterns dominate a true orthorexic’s life.

They think the current diagnostic tools for orthorexia focus too much on the dieting itself, and not enough on the disruption the diet can cause in some people’s lives. Lots of people strive to eat healthier, and some even go to extreme lengths to do it, but most can reel it in and still enjoy things like Thanksgiving dinner with the family or a night out with friends. Such activities can cause extreme distress in a person with orthorexia.

“In the DSM-V, 75 percent of those disorders say it has to cause a problem with work, school, or social functioning; or you are so distressed about it that you raise your hand and say, ‘I need help,’” Dunn said. “It’s crossing the line if you’re malnourished, if work says you can’t take a 90-minute lunch anymore.”

But diet is still important, just as a risk factor.

“An eating disorder can certainly manifest as an unhealthy fixation on eating only ‘healthy’ foods, but that alone doesn’t necessarily constitute a clinical diagnosis.”

To explain what he meant, Bratman drew a parallel with gender: Being a woman is a risk factor for osteoporosis. But being a woman isn’t a symptom of that disease. Subscribing to a particular restrictive diet, such as veganism, is simply a risk factor. Some vegans will develop orthorexia, but the vast majority will not.

Dunn and Bratman hope to refine the diagnostic criteria in future papers. They plan to pose several questions—upwards of 100—to people suspected to have orthorexia but whose official diagnosis, if they have one, may be something else. Then, they’ll whittle down the questionnaire based on the response. For example, if a question seems to resonate with the group as speaking to their experience with orthorexia, then it’s likely to stay in the final questionnaire. Bratman said this is the more customary way to develop diagnostic criteria.

Even if they develop a solid questionnaire, Dunn and Bratman have an uphill battle to convince the larger scientific community that orthorexia should join the nearly 300 diseases currently listed in the DSM-V. The field of psychology is often at odds about whether it should keep adding categories and sub-categories to the diagnostic tome.

Russell Marx, chief science officer of the National Eating Disorders Association, doesn’t see orthorexia as deserving its own category.

“The behaviors the term ‘orthorexia’ has been used to describe are related to an individual’s temperament and personality. Many people with eating disorders, especially anorexia nervosa, tend to exhibit traits such as perfectionism, harm avoidance, negative emotionality and rigidity,” Marx said via email. “These personality traits often persist even into recovery. So, an eating disorder can certainly manifest as an unhealthy fixation on eating only ‘healthy’ foods, but that alone doesn’t necessarily constitute a clinical diagnosis.”

Corboy sees it differently. “I would say five years ago, people at eating disorder treatment centers were quite literally missing [orthorexia] completely,” Corboy said. “They would just prefer to conceptualize it as anorexia.”

People with orthorexia are different because their fixation is on food purity and health, not on thinness or body image. It may seem like splitting hairs, but recognizing these subtle distinctions in some official way through the DSM is important for care.

“From a clinician’s perspective, the presence of a diagnosis in the DSM is primarily beneficial in that it gives legitimacy to something we see on a regular basis,” Corboy said.

He added that officially recognizing the disease increases the likelihood insurance companies will reimburse patients for treatment. It also makes research easier; funding agencies are more supportive of research in a disease that the medical community agrees actually exists.

These are the factors fueling Bratman and Dunn’s quest to define and get orthorexia into the DSM. Opponents may not see the point of defining a disease that is, in their eyes, not meaningfully different from one of the hundreds of others currently listed in the DSM-V. But defining orthorexia—making it real—could shine a light on unhealthy behavior disguised as healthy.