Sydney woman Elle — a pseudonym to protect her privacy — is in recovery for anorexia nervosa, but it took her years to talk to her doctor, friends or family about regularly chewing and spitting out food.
"It is like some people just interpret it as coward's bulimia, or pointlessly wasting food for no good reason," the 32-year-old told BuzzFeed News. "There is such limited understanding about the true complexity and pain associated with it."
A large scale study published this week in Eating Disorders: The Journal of Treatment & Prevention found the prevalence of the disordered eating behaviour known as "chew and spit" was higher in adolescents than adults.
The pathological chewing of food and spitting it out before swallowing has a prevalence of 0.4%, slightly below the range for eating disorders like bulimia or anorexia, which occur in about 1% to 2% of the adult population. But the longitudinal survey of 5,111 high school students found 12.2% reported at least one weekly chew-and-spit episode within the 28 days before they were surveyed.
When Elle was a young child she developed a fear of throwing up after a bad case of gastroenteritis. By the time she was seven she had avoidant restrictive food intake disorder (ARFID), characterised by avoiding or only eating small amounts of certain foods.
"I’m a very sensory eater, so food smells, texture, colour, taste ... are very important and always have been," she said.
Elle began chewing and spitting out around the same time she developed "orthorexia", a condition not formally recognised by the Diagnostic and Statistical Manual but which involves an obsession with eating only "pure" or "healthy" food.
"When I became overly invested in exercise, clean eating and spending unlimited hours at the gym my body started crying out for food," she said.
"I got to the point where I couldn’t resist putting tempting foods in my mouth but once I began chewing it the guilt and anxiety became overwhelming, so I would chew it, taste it and then spit it out in the bin, in the sink, in a napkin, wherever I felt I could conceal it or get rid of it."
Over the years Elle has confided in some specialists about the behaviour, a few of whom "actually admitted they were out of their depth" or changed the subject.
"My current therapy team don’t really approach it much directly, but by allowing myself to eat more freely, working on re-nourishing my body and working on guilt and self-worth struggles have definitely been helpful," she said. "By feeling more worthy and realising that it’s okay to allow yourself to eat what your body craves, the urge to spit food out decreases as far as my experience goes."
Elle is unsurprised the research shows a higher prevalence in adolescents.
"[At that age] we haven’t created effective self-management strategies yet, so we do what we can in order to manage overwhelming emotions," she said. "When you are already at a time in your life when you are searching for who you are, battling feelings of worthlessness and confusion, and are not quite sure of yourself, it leaves you so vulnerable to disorders that feel as if they help you gain control and manage your feelings."
The study's lead author Phillip Aouad said the American Psychiatric Association removed chew-and-spit behaviour as a recognised symptom from DSM-5 in 2013 because it was believed not to be prevalent, but that his research challenges that.
“There aren’t any available screening tools for these behaviours so it is much easier to fly under the radar,” Aouad told BuzzFeed News. "It is so taboo so people aren’t forthcoming about the behaviour."
Aouad said the study found chew-and-spit behaviour was associated with increased psychological distress, overeating, fasting, weight and shape concerns, laxative abuse and vomiting.
The study found 10.2% of males and 15.1% of females had reported episodes of the behaviour.
“There have been cases where people have actually mentioned this to their clinicians and they have been ignored because they thought it wasn’t a big issue,” he said.
The InsideOut Institute for Eating Disorders director Dr Sarah Maguire said the research showed the behaviour “might be more prevalent in people that have not been diagnosed with an eating disorder” than previously thought, as 12.2% of adolescents aren’t being treated for eating disorders.
“It is part of the constellation of eating disorder symptoms that you see but it is not present in every single person with an eating disorder,” Maguire told BuzzFeed News. “The function of the behaviour is to have the stimulation and satisfaction of eating food without taking the calories on, and we would expect underlying that is other features of an eating disorder like fear of weight gain.”
Maguire said as a clinical psychologist she would want to do a “full assessment of the presence or absence of an eating disorder” for anyone presenting with this behaviour.
“It would be my expectation that this symptom is not the only symptom of psychological distress in most of these young people.”
Elle said she hopes the doctors and the general public take this behaviour more seriously.
"Without proper recognition people who engage in these behaviours won’t realise how unwell they truly are and the risks associated with chewing and spitting their food," she said.
"I wish there were support groups like there are for anorexia nervosa and bulimia nervosa and all the other disorders.
"There are few prevalence studies, very little research or recognition, and awareness is almost non-existent, which can be so isolating and alienating."
If you or someone you know needs assistance or information about eating disorders please contact the Butterfly Foundation's national support line 1800 33 4673 (1800 ED HOPE) or visit their website.