Teens ready to speak about a silent disease
May 16, 2011 · Updated 11:19 AM
Imagine a disease where the nourishment needed to fuel your body becomes an object of obsessive pain and torture.
Heidi McCay, a nurse for the Bainbridge Island School District over the past 21 years, said she has seen manifestations of this disease from the beginning of her tenure. It is a disease that can turn every day into a compulsive routine of starvation and restriction.
And it’s a disease that no one wants to talk about.
One island doctor estimates that for every child suffering from obesity on Bainbridge there are 10 others who suffer from some form of an eating disorder. For many the obsessive fear of gaining weight, impulsive dieting and restriction becomes a coping mechanism and an outlet for the excessive stress and pressure of daily life.
McCay said it’s usually a teacher or a coach who gets worried about a student, or sometimes a friend or a group of friends who come to get help for another individual. Never, McCay said, has a student willingly approached her for help.
“Only once in 21 years have I called a parent after learning about a potential eating disorder and the parent expressed an immediate willingness to tackle the problem and get their student help,” McCay said. “It usually takes several confrontations with the student and parent to get them to recognize the problem. It’s an insidious disease that no one likes to talk about. Sometimes that’s because the parents themselves have an eating disorder and it becomes generational, or because treatment can be expensive.”
Eating disorders come in varied forms. The symptoms of anorexia often include severe weight loss, fear of weight gain, loss of menstruation in females and body image distortion. Bulimia is often characterized by episodes of binge eating at least several times a week, followed by purging through self-induced vomiting, exercise, laxatives, or fasting. This often creates small and large weight fluctuations. Between 1-13 percent of American high school and college-age women are estimated to suffer from an eating disorder.
This year, McCay said she has seen students start to speak up about eating disorders. This year BHS had the school’s first ever eating disorder awareness week, started by a recovering student, which has opened the doors to talking about a quiet disease that is debilitating lives every day.
“I knew it was a problem when I stopped living. My eating disorder began to take priority over things I loved before, like theater, dancing and singing,” said Monica Saeger, a BHS graduate. “I stopped living and was just barely existing.”
Saeger, an island native, left BHS her sophomore year for an arts academy in Canada. She managed one semester before she decided her eating disorder had taken over her life. Unable to find a program that could handle the intense nature of her condition in Washington, she had to put her education on pause, and head for Minnesota. She first began to struggle with anorexia when she was 13.
Her treatment, the Emily Program, consisted of a therapist, dietitian, primary care practitioner and a support group, which Saegar said helped save her life.
“You basically have to relearn how to live and cope with everything just like a drug addict because your eating disorder becomes your life,” said Saeger.
Saegar returned home and finished high school after six months of treatment. She says she feels like she can talk about her disease now, especially if she knows that it could help others.
“Half of all Americans know someone with an eating disorder,” said Jillian Lampert, a spokesperson from the Emily Program. “Statistics show more people suffer from an eating disorder than breast cancer, yet we haven’t developed a language to talk about it.”
The program recently opened an intensive out-patient office in Seattle. Lampert, said the Emily Program came to Seattle because the city lacks both accessible and intensive-treatment options.
“Often when people think of an eating disorder they think young, female, probably white and mid to upper class. There are plenty of people all over the age spectrum, and the weight spectrum and those who are suffering in silence unaware their pain has a name or that they can get treatment and there is hope.”
25 percent of people suffering from an eating disorder are male, and the Emily Program works with patients from eight to 78 years of age, according to Lampert. Socio-economic factors like health insurance also dictate who talks about the disease. Even for those who have health insurance, many companies don't cover eating disorder treatment. Lampert said the Emily Program works hard with companies to get coverage for their treatment, but it's often an uphill battle because mental health coverage is not universally accepted or understood.
In the fall of her freshman year Bella’s family began to notice a change. Bella could no longer run like she used to, and her skin had developed a yellow tint. It was Bella's brother who first mentioned the warning signs to his mom, Christine.
Over the course of the next several months the situation disintegrated until Bella landed herself at Children’s Hospital in Seattle near Halloween. Her resting heartbeat was 40 beats a minute (normal is 60 to 80) and her blood pressure was alarmingly low. She didn't go back to school, but stayed with her aunt in Seattle, hoping to gain some weigh back, recover and regain her strength enough to head back to school.
After a brief recovery phase she went back down hill. She had to head back to the hospital with a heart arrhythmia in January. Bella's body had become so weak that Christine stayed by her bed the entire night as the heart monitor continued to remind her how close Bella had come to losing her battle. From the hospital Christine decided it was time to pack up. They went to the airport to get Bella treatment in Denver, Colo.
Bella's treatment was family oriented, and Christine had to eat every meal with Bella for months. Together they learned that eating disorders are often a reaction to stress at home, and a coping mechanism to control what otherwise seems like an out-of-control life. Financial troubles had made family life tense and Christine realized the impact it had left on her daughter.
“For parents sometimes it is hard to admit that things at home are hard, but if we don’t talk about it then our kids are internalizing it,” Christine said. “We push young people so hard to achieve greatness, get into the right schools, be athletes. We push to create this ideal world for our children and they can’t stop to say it is too much pressure. Our kids can’t take this.”
After seven weeks, Bella returned to Bainbridge and slowly started back at BHS. Every day for the rest of the school year her mom picked her up and they ate lunch together. It wasn't Bella's ideal lunch date arrangement, but she understood the importance of her recovery process.
“When I came home I desperately wanted my friends to ask about what happened, but there is such a stigma,” said Bella. “It’s such a widespread problem
here on the island, but nobody wants to talk about it.”
That’s when Bella came across the National Eating Disorders Association (NEDA) and found an avenue to talk about her disease. Last May she organized a group of students to participate in the NEDA awareness walk in Seattle, and she won an award for raising the most money – $2,200 for the cause.
“I felt empowered by overcoming my internal struggle, and this was a way to express that there is hope and to connect people and give them permission to talk about the disease,” said Bella.
In February, Bella championed a NEDA week at BHS where she held a “be comfortable in your jeans” drive where anyone could donate jeans to a consignment store, which would in turn donate the money collected from the jeans back to BHS for an annual NEDA awareness week.
In some cases Bella said that her openness to talk about her past and the effect of her disease has made others feel more comfortable to talk about it. But it isn't enough, and even amongst her friends, there is still a hesitation about the subject. That is something Bella wants to continue to change at BHS.
This year Bella has to miss the NEDA walk in Seattle for her brother’s graduation, but she plans on gearing up for an even bigger NEDA week next February during her junior year at BHS.
“My disease is never going to go away, and still I have good days and bad, but my good days are better and my bad days are nothing like they were before,” said Bella. “But I know that my disease is something I need to talk about.”