CORTLAND -"It's just a potato chip."
At a session at the Carolina House, a 12-bed residential eating disorders treatment facility in Durham, N.C., one single chip - not a handful, not a bag - was placed in front of each girl in the group.
After many weeks of staying there, patient Jena Williams was able to see that that's all it was - a potato chip.
But when she got there, something in Williams brain made her see something entirely different.
Williams began her struggle with an eating disorder during her junior year at Lakeview High School after breaking up with a boyfriend she'd been dating for a year. Williams, already a cheerleader for football and basketball, began to exercise.
She ate during the day: cereal for breakfast, a granola bar and apple for lunch and dinner at home. Then, at 8 p.m., she would start working out.
"I thought it was normal," Williams said. "People were like 'Oh, you look really good.'"
"I used that as my coping," she said. "I stuff my feelings down inside."
Sufferers of an eating disorder struggle with dysregulation said Chase Bannister, clinical director for the Carolina House. They have difficulty naming and navigating complex emotions, such as fear, anxiety, joy or any emotion that might arise out of interpersonal or internal relationships.
"What we know about eating disorders is that our latest scientific research points to its being a biogenetically mediated illness - eating disorders are an inherited, genetically-pre-disposed illness," he said. "Genetics holds the gun, and environment pulls the trigger. Environmental factors turn on the sleeping dragon."
He said hormones associated with puberty, coupled with eating disorder symptoms like restriction and purging, often trigger the onset of illness.
Williams and her parents struggled to figure out what was wrong at first. They visited a gynocologist because her periods had stopped; they tried an endocronologist and discovered she had an overactive thyroid. Her heart rate at one point dropped to 37 - normal, according to the Mayo Clinic Web site, is 60 to 100 beats per minute. The family, all the while struggling with getting insurance to cover treatment, went to the Cleveland Center for Eating Disorders and Akron Children's Hospital. In Cleveland, they tried the Maudsley approach, which is a family-involved program geared toward adolescents.
During her senior year, Jena would have lunch at her grandmother, Kathleen Beaumont's house.
"I tried to fix things she liked to make it different every day," Beaumont said. "I think she was more comfortable eating here. She didn't want to eat junk food or fast food. She always ate a nice lunch until she got deeper into the disease."
Jena Williams thinks Christmas of that year was a trigger, with all the family get-togethers and the cookies.
"Being around a lot of food freaks me out," she said.
She has no idea how she got through that year and graduated. During the day, she'd make lists of the exercises she'd do at night. She walked as if in a fog. She was able to attend the prom but only after a 10-day stay in the hospital.
Her mom found the Carolina House online. She was still struggling to get an answer from their insurance company.
"No insurance in Ohio covers eating disorders," Karen Williams said. "Maybe because the success rate is so small. One-third die, one-third manage and go back and forth, and one-third manage and live healthy, productive lives."
The Carolina House cost the family $1,000 a day. Jena was there for 112 days, but she says it saved her life.
Here, Jena learned dialectical behavior therapy.
"DBT is centered around the use of four skill sets," said Bannister. They are core mindfulness, interpersonal effectiveness, emotion regulation and distress tolerance.
"An eating disorder is characterized by a fundamental loss of the perspective between food and body image, to the extent of delusional," he said. "Carolina House is a place to offer them a re-narration of perspective or a guidepost in a compassionate and evidence-based way."
"It was OK to cry, to be made to feel like you can't do this," Jena Williams said. "You do the opposite action. Ride the wave of emotion, ride it out so you don't purge or whatever. Play a game. Just cry."
So these women at the house were cheered on for crying, for sharing their eating disorder issues, because "the quieter that you keep it the strong it gets," she said.
At the Carolina House, there were no mirrors. Karen Williams stayed nearby with her sister-in-law, but she visited for two hours on Sundays. She was not allowed to bring clothing or pictures to her daughter. Patients at the house went to the bathroom with the door open - to protect them from purging or exercising behind the closed door.
At about 45 days in, Jena Williams realized she was in a life-or-death situation. She went through an isolation period and cried a lot. She endured the difficult "re-feeding" process and watched her hair thin. But little by little, she came back to herself.
Now that Jena is in recovery, Karen and Jena Williams want to share their experience to help others.
"When she's fully recovered we want to be able to give more back to this," Karen Williams said. "I want people to know it's something they shouldn't be ashamed of, to talk about."
Bannister said his staff - the ratio of staff to patients at the house is 55 to 12 - is constantly working with insurance companies to convince them that true recovery takes more time.
"This is the most lethal mental illness and it requires time, structure and expert support in order to restore the person to health," he said. "We live in a hostile recovery environment so it takes an incredible amount of courage to be honest about this illness in the context of a society that doesn't get it yet."
Bannister said research is remarkably underfunded. In terms of world literature, he said, there are 19 studies in the treatment of anorexia and 38 in bulimia.
"They have only looked at, in numbers of patients, 896," he said. "That is unacceptable. It is our ethical responsibility to further data in the field."
Bannister said the media has taken hold of other inheritable mental illness such as schizophrenia and bipolar disease, but not anorexia and bulimia.
"For some reason no one's talking about it," he said. "We in general society often prefer to blame the patient. A major component of our program is to first reduce blame and shame in regards to this illness."
To cover the cost of treatment, the Williams family held three successful fundraisers that raised about $10,000 - enough to pay for 10 days at Carolina House. They have sold their business, Michelangelo's Hair Design in Howland, and their home is for sale.
Karen Williams went back to work this week. Jena went to Colorado to visit family, and she has plans to go to cosmetology school at the end of March. But she knows this is something she will deal with for the rest of her life.
"You don't really ever come out of it. It's manageable like diabetes. You have to eat to survive," she said.
Bannister said a lot of people in the world think eating disorders are disorders of choice or will or vanity and that a person chooses to have an eating disorder.
"Nothing burns me up more that hearing a clinician or medical provider say, 'Can't you just eat a sandwich?'" Bannister said.
"It's like taking an alcoholic to a bar and saying 'you have to drink' when you don't you want to," Jena Williams said.
"I want people to know that if you have an eating disorder, it doesn't make you who you are," she said. "Asking for help is strength."