Healthy-looking sufferers of 'eating disorder not otherwise specified' face higher mortality rate than bulimia and anorexia
22:27 GMT, 14 November 2012
The relatively unknown EDNOS, or 'eating disorder not otherwise specified,' affects 24million Americans; the sufferers lost in a realm between bulimia and anorexia, where their symptoms are the same, but don't fully meet the full criteria of those disorders.
EDNOS, where sufferers usually look healthy while exhibiting a combination of
eating disorders, such as being strict with counting calories
but also purging after eating, is a deadly condition – with a
mortality rate of 5.2per cent, higher than both anorexia and bulimia.
Taylor, 20, who was recently diagnosed with EDNOS, told ABC News:
'It really feels like it is a second person inside of you. It's like
your best friend but your enemy at the same time. It's hard to
distinguish sometimes the ED talking and what's Taylor talking.'
Fearing food: Taylor, 20, who was recently diagnosed with EDNOS, said, 'It really feels like it is a second person inside of you. It's like your best friend but your enemy at the same time'
Originally diagnosed with bulimia, and then with anorexia before doctors said she didn't meet the weight criteria for anorexia, she received an EDNOS diagnosis.
Taylor said she felt the condition she was labelled with wasn't as serious as the more well-known eating disorders, 'Because you only hear about bulimia and anorexia,' she said.
'A lot of people think – just because you don't meet the weight criteria, “Oh, you don't have an eating disorder.”'
Dr. Douglas Bunnell, a clinical psychologist and vice president of The Renfrew Center, said 'It's still a misperception out there
that these are relatively benign sorts of disorders or diets gone bad.
'[But] these are life-threatening, serious illnesses. They have
the highest mortality rate of any psychiatric diagnosis.'
Taylor, who had been secretly binging,
purging and restricting calories throughout high school to keeping up
with her dance team, said she doesn't remember ever liking the way she
'It really feels like it is a second person inside of you'
'I always see the imperfections in every picture,' she said.
Her eating behavior began to destroy her health, and when she got to college, EDNOS took over. After eating only a stick of string cheese and then nothing else for days, she began fainting at practice.
said: 'I wasn't hungry. I would be at the gym for two or three hours
every day after only eating a cheese stick and maybe nothing that day,
and then I also would purge too.'
All ages: Chloe, a 36-year-old assistant professor, mother of three young children, and EDNOS sufferer said she went back and forth between binging and restricting since she was 12
Renfrew Center: Chloe, once an aspiring dancer, said she first turned to food to numb emotional pain, but as she became an adult, her eating disorder became about having control of her body
Because EDNOS can include various behaviors, and not all sufferers express all of them, it can be difficult to diagnose.
Ali, 23, a former Ivy League softball pitcher, said her EDNOS didn't stem from a desire to lose weight.
She said she became obsessed with getting back on the field when a shoulder injury sidelined her during college. She used rigid diet rules and exercise in an effort to rebuild her strength.
'I had this idea that if I controlled [what I ate] I could never get hurt again,' she said.
'I ate for fuel,' she said. 'I didn't eat what I enjoyed. I ate what I needed for a workout, a little bit of quality carb and a protein. It was that specific.'
Ali stopped seeing friends, and dating – instead she worked out constantly and became obessed with food portions.
'I always bring a sweatshirt so you can't see my bloating after meals'
was planning every single meal, portioning, measuring, so that I had
just too not too much, not too little, just the right amount of the
right foods, nothing else,' she said. 'If it wasn't the right food, I
couldn't have it.'
when she stopped menstruating, and lost her ability to concentrate,
frequently fainting and having night sweats as her body tried to warm
itself, she realized she needed help.
She struggled with the idea of having an eating disorder because she felt she didn't fit the mold for anorexia or bulimia.
Both Ali and Taylor are undergoing
treatment at The Renfrew Center, where the aim is to restore patients'
physical health, with a long term focus on psyche – and finding the
source of their destructive thoughts.
Taylor admitted: 'We have to eat at treatment so I always bring a sweatshirt so you can't see my bloating after meals. Yeah, it's still a part of the body image that I see.'
Recovery: As part of their treatment, Renfrew patients have to eat their 'fear foods,' and each patient, including Chloe, has a list of foods they are too scared to eat
At Renfrew, counting calories, scales and discussions about weight are forbidden, which many patients struggle with. Taylor said she used to weigh herself seven to 14 times a day.
Patients also have to eat what are called their 'fear foods,' and each meal is monitored by a therapist and must be eaten within an hour.
Taylor said: 'My fear food would be chocolate milk. Dessert, ice cream in particular, pasta, fries, really anything I considered as bad food, which they teach you that there is no such thing as bad food. But really processed foods, stuff like that.
'Crackers, those would be my binging foods that I would go on and purge those,' she added.
Because a large portion of EDNOS is secretive, Taylor said she always ate her meals alone before her diagnosis. But at Renfrew, after meals patients must attend a meal-support group therapy session to discuss how they are feeling.
As her treatment progressed, Taylor said she began to start to 'taste food' for the first time, but still broke down and cried at meals frequently.
Taylor was presented with pizza as a 'challenge meal' because it included one her fear foods. After eating the entire serving,which is the goal at Renfrew, she told the therapist that eating her meal was still very hard.
'Once I saw [the pizza] all on the plate and then seeing it now [empty]… I don't feel good,' she said.
The Renfrew Center shows on Nightline November 14th at 11:35 pm ET