In 2014 New Jersey college student Clarice Bourland spent most of her energy —and most of her day — deciding how much food she would allow herself to eat.
“The only things I ate were fruits, vegetables and egg whites, and I really limited that. I purged everything I ate. I was exercising, running over 50 miles a week. I was so afraid of food that I would hold my breath when I was going passed places with food because I was afraid that if I breathed in any particles of food I would become fat,” Bourland said.
By the time she told her parents she needed help and went to see a doctor her kidneys were failing and she had to be admitted to the hospital.
Bourland just finished her second round of treatment at McCallum Place in St. Louis, and she says she’s in a better place now than she’s ever been.
“I think my eating disorder will always be a part of my life. I think it will kind of be a nagging voice in the back of my head. But I’m hoping that it will just be a whisper, and something I can kind of ignore and say okay ED shut up. You’re not right,” Bourland said, adding that she has a good treatment team, a supportive family and good coping skills.
Researchers and treatment providers say having a relapse like Bourland did last year is pretty common when it comes to eating disorders, but they don’t have a clear idea of what causes a relapse or what helps people maintain healthy lifestyles long-term.
A desire to fill in that research gap led Saint Louis University psychologist Jillon Vander Wal to start an online database.
She took a break from teaching last semester to develop a website called the Eating Disorder Recovery Registry, where people can share their stories of recovery and register to answer a yearly survey.
“We don’t have much research in terms what is recovery, and we don’t have very much research in terms of what are patients’ perceptions in terms of things that help them recover,” said Vander Wal, who directs SLU’s Eating and Weight Studies Lab. “Learning from their perspective will help us know better how to approach recovery and then also in terms of relapse prevention help us understand what are some of the things that might be challenging and how to avoid those things.”
Vander Wal said she and her lab assistants hope to find out what the most helpful parts of treatment were, and what things about their family and their community helped them or made things more difficult.
Psychologist Randy Flanery, who has treated eating disorders for more than 30 years, said her research area has the potential to fill a gap in understanding.
“You can have an effective eating disorders treatment team but at some point you have to transition into how you’re going to live your life,” Flanery said. “What we don’t know is after people have gone through a course of treatment and seem to have really made great progress how do they do after that?”
“We’re particularly interested in the individuals who have been able to maintain recovery for an extended period of time,” Flannery added. “Because we know there are some people who seem to be doing well but then they slip, they have relapses and they have to go back into treatment. And really we want to know what we can do so they don’t have to come back into treatment.”
According to Laura Huff, who directs the eating disorders program at the St. Louis Behavioral Medicine Institute, people with anorexia and bulimia are more likely to die than people diagnosed with any other mental illness.
Depending on the research study, mortality rates can be as high as 20 to 45 percent. Huff said the rates vary because outcomes depend on treatment and what’s listed as the cause of death. People are much more likely to recover if they have treatment, which would lower the mortality rate. But the mortality rate could actually be higher than reported in some cases because the reported case of death is a complication of the eating disorder, such as heart failure or suicide, instead of the eating disorder itself.
“When we’re talking about eating disorders we’re talking about severe, brain-based mental illnesses,” Huff said. “They affect right now over 30 million Americans and over 575,000 Missourians are diagnosed with eating disorders. Now of course that assumes they’re being identified so that could even be an under-estimate of prevalence.”
The National Eating Disorders Association estimates that about 20 million women and 10 million men in the United States will experience an eating disorder in their lifetime.
The number of diagnosed Missourians was collected by the Missouri Eating Disorders Association. According to Huff, who is on the association’s board, the organization collected the statistic as part of a successful effort to pass a state law requiring insurance companies cover eating disorder treatment.
Follow Camille Phillips on Twitter: @cmpcamille.