Susan Barry’s son TJ didn’t fit the stereotype of someone with an eating disorder. For one thing, he was a boy.
“If he would have had cancer, you know, we would have had all that empathy, and I would have been casseroled to death," said Barry. "But you tell somebody that your kid has an eating disorder and they're like, ‘Why does he want to be skinny?’"
But the reality is that one in three people suffering from an eating disorder is male.
"He didn't want to be skinny," Barry said. "He wanted to have muscles and be faster and a better athlete and a perfect athlete."
He succeeded at many sports and was always a straight A student.
“I told TJ, it's okay to lift weights for an hour, not four hours. It's okay to do sit ups, not 1,000 a day in the morning and 1,000 at night. It's okay to go out for a run. Go for a three-mile run, not at five-mile run in the morning and then sneak out and do another five-mile run. It becomes an addiction. And it's something that they cannot stop and control,” Barry said.
TJ passed way 15 years ago at the age of 22, after struggling with the eating disorder anorexia nervosa for eight and a half years.
A lab at Michigan State University is now working to understand the causes of eating disorders and to correct wrong ideas about who gets them and why.
“Families are not the causes of an eating disorder. And actually, they can be the best allies in terms of treatment,” said Kristen Culbert, an MSU research specialist in the lab led by psychology professor Kelly Klump.
Their team studies biological factors that contribute to getting an eating disorder such as genetics and hormones.
“We think that if you have some underlying genetic vulnerabilities for eating disorders, hormones might be really important in determining whether those genetic vulnerabilities actually like express or come out as an eating disorder,” said Megan Mikhail, a doctoral student in the lab.
It is clear that this disease does not just affect wealthy people and not just girls and women.
“We think the reason that idea has sort of persisted is because, historically, those are the people who've been able to actually like access treatment," Mikhail said. "We've found that in both boys and girls, they're more likely to develop eating disorder symptoms if they are from either a neighborhood that has less resources or less financial wealth or a family that is having kind of less financial resources."
Jessie Linton's anorexia nervosa started when she was around 12 years old. Now a student at Wayne State University, she says she was fortunate because she got treatment very early.
“I was a ballerina, and I just wanted to be skinny, you know, so I was doing things that were proven to be effective to lose weight but were also incredibly dangerous," said Linton. "Eating becomes like a fear. You're genuinely afraid to eat and to gain weight. It’s like facing your biggest fear if it's whatever it is, spiders or snakes, every day three times a day.”
TJ weighed 78 pounds the day he died. He left his mother with a mission.
"One of the one of the last things TJ said to me was, ‘Mom, why can't somebody fix this?’ You know, and it was almost like a message to me. ‘Okay, I've left all this stuff, Mom, do something with it.’”
And she did.
Barry wrote “Dying to be perfect,” a book to help prevent other parents from going through what TJ’s family went through for over eight years.
"After they turn 18 you have no control over getting medical records, they won't even tell you what he weighs,” said Barry.
You can purchase the book here and watch the full interview here.
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