* Editor’s Note: Due to the sensitive nature of this story, the name of the high school student involved has been changed to protect her privacy.
Laura* was only 10 years old when her mother noticed a change in her. Laura became preoccupied with her appearance, and fixated on food. She began to lose weight, but with the support of her family, admitted that she had an eating disorder.
Laura will be a senior in high school next year, and she is still battling the disease.
“For six years, I’ve depended on one thing, which is my eating disorder. That’s my comfort zone,” she said.
But not any longer.
After a recent relapse, Laura visited a friend at the hospital whom she met through her eating disorder support group. Seeing the teenager lying in a hospital bed was a wakeup call for Laura, and she decided she is done letting her eating disorder control her life.
“Six of my most important years I missed doing so much that so many other kids do. It’s time for me to live my life,” she said.
Laura is able to do that through the support of a team of caregivers, including a nutritionist, physicians from the Adolescent Healthcare Center at Hasbro Children’s Hospital and her therapist, Stacey Arruda-Tracey, a clinical social worker who works out of the Child and Family Psychiatry office on Sockanosset Crossroad.
While these supports have gotten Laura this far, Arruda-Tracey admits they are not enough to address the growing need in the community.
“Everybody knows what a pink ribbon means, but no one knows the devastating effects of eating disorders until you live through it,” she said. “There are no resources; no one knows where to go.”
To increase awareness, and connect eating disorder patients with the resources they need, the National Eating Disorders Association is hosting its 25th annual Awareness Week from Feb. 26 through March 2. The week of events kicks off on Sunday, Feb. 26 at 4:30 p.m., with a candlelight vigil at the Garden City Center Gazebo.
The Cranston Chamber of Commerce is sponsoring the kickoff and supporting the schedule of events, which includes a “Voices of Recovery” panel on Feb. 28 at 7 p.m., a parent education and support seminar on Feb. 29 at 7 p.m. and the 25th annual NEDAwareness Week celebration dinner dance on March 2 from 6 to 11 p.m. at the Santa Maria Di Prata Society.
The theme of 2012 NEDAwareness Week is “Everybody Knows Somebody,” in reference to the growing number of Americans who suffer from eating disorders.
As many as 25 million people have eating disorders in the United States, and yet the funding levels are surprisingly low. For the 10 million eating disorder patients in 2005, only $12 million was put into research funds, according to the National Institutes of Health. Alzheimer’s, by comparison, affected 4.5 million people that year but was funded with $647 million.
Additional funds and awareness are at the top of Arruda-Tracy’s wish list. Ultimately, she wants Rhode Island to have a non-profit dedicated to advocacy, support and education for people with eating disorders.
“Early intervention has been one of the key factors in improving outcomes,” she said.
In Rhode Island, there are few options for individuals with eating disorders. There is the program at Hasbro and an outpatient program through Butler Hospital, but no residential options. When intensive treatment is required, Arruda-Tracy finds herself referring patients as far away as Arizona.
At primary care offices, eating disorders are often not caught early enough. Eating disorders include anorexia nervosa, or self-starvation; bulimia, which is often characterized by binge eating and self-induced vomiting; and binge eating disorder (BED). Eating Disorders Not Otherwise Specified (EDNOS) can include any combination of the symptoms of the classified eating disorders.
“You should be able to go to the pediatrician and the pediatrician should be able to accurately diagnose an eating disorder, but they’re not educated,” Arruda-Tracy said.
Even when it comes to support, the nearest parent support group is in Newton, Mass., which she sees as a problem, as caregiver burnout is prevalent in families where a child suffers from an eating disorder.
Paul Eacuello can see how that happens.
His sister-in-law had an eating disorder, and when she died, his daughter took the news particularly hard. Shortly thereafter, he began to worry about her well-being but wasn’t sure what the problem was.
“I noticed a change in her. I noticed depression and I thought it was just about the death,” he said.
It wasn’t just depression. It was an eating disorder. His daughter’s weight dropped and she experienced other health problems as a result of her weakened state.
For Eacuello, his initial reaction was “just eat something,” but he soon realized how serious the disease was.
“This isn’t something like a cut on your finger where you put a band aid on it to fix it. It is something within them that takes over the body,” he said.
It has the tendency to take over the family as well. Parents spend much of their time bringing children back and forth to the doctor. Eacuello’s daughter sees her doctor weekly, where she is weighed and has her vitals checked. Every other week, she visits her nutritionist. And several times a week, she sees Arruda-Tracy either in private or as part of the support group.
At home, Eacuello and his wife completely oversee food preparation, and do not allow their daughter to watch, as she could be mentally counting calories and essentially talking herself out of eating the meal.
“She’s supposed to have on her plate whatever we give her. It takes the control away,” Eacuello explained.
At school, his daughter must eat lunch with a counselor, to make sure she’s taking in enough calories.
The treatment measures are intensive, but Arruda-Tracy sees an alternative in early intervention. She believes schools should be doing eating disorder screenings, and more community supports should be in place to help young people cope with the disease, especially because there is a negative stigma surrounding it.
“People think it’s a choice,” she said.
The warning signs vary but include preoccupation with appearance, sudden weight loss, food refusal, compulsive exercising, ritualized behaviors at mealtime and isolation.
“The pressures to be thin and fit in, I think, become so overwhelming that we’re seeing a lot of school avoidance,” Arruda-Tracy said.
Laura saw all of those warning signs in herself. She felt incredible pressure to fit in, and when she looked in the mirror, all she could see was her weight.
“I wanted to be like everybody else,” she said.
Laura missed quite a bit of school because of her eating disorder, but she hopes that she can avoid further relapse. Still, she says the disease is always lurking in the back of her mind.
“It’s not easy, that’s for sure,” she said. “I don’t think I will ever be able to say I’m fully recovered. I think I will be in recovery for the rest of my life.”
Arruda-Tracy has seen Laura through her second relapse and recovery, and is confident that she will move on from her eating disorder.
“Recovery is a process. Being recovered is when they’re no longer basing their entire lives on a number on a scale, or when they’re not basing their whole lives on food,” she said.
It also comes when the individual realizes that perfection isn’t possible.
“It’s not an overnight process,” Arruda-Tracy added.
Eacuello met Laura for the first time last week, but as they discussed the similarities between her experiences and those of his daughter, he said he found the teenager’s strength reassuring.
“The fact that she’s controlling the eating disorder now and she’s controlling her life, that gives me hope and I’m very proud of her,” he said.
That’s not easy for Laura to hear. She has become accustomed to putting herself down, but she works on it every day. And when other teens hear her story, she hopes they will stop dangerous behaviors in their tracks and realize that they are perfect just the way they are.
“Don’t give up on it,” she said. “You’ve got to be comfortable with yourself; you’ve got to learn to love yourself.”
For more information, e-mail Stacey Arruda-Tracy at firstname.lastname@example.org, visit www.nationaleatingdisorders.org or call the NEDA help line at 800-931-2237.