'My Eating Disorder Was Undiagnosed For 50 Years'

There's a lot Jenni Gilhome has achieved in her 62 years on this earth.

She went through high school, raised three children, and became an occupational therapist. But for almost her entire life, she has been dealing with an eating disorder.

And it overcame her.

"I was the eating disorder," she told ten daily.

"That was the most important thing in my life. I was still able to do everything: I was able to work, be a mother, do all the things I was able to do. I just didn't feel like I owned any of those things. They were just window dressings. The very real person, the real guts of me, was an eating disorder."

It's been affecting Gilhome since she was a toddler. At two-and-half-years-old, she was taken away from her parents and placed in a children's home. Food was regulated, and horrible.

By ten, she experimented with throwing up her meals, in part spurned on by fears she would be fat. As an adult, she was eating and throwing up ten times per day, at times shoplifting junk food when her budget -- already stretched in providing for her family -- would not sustain her eating disorder.

"It was exhausting," she said, "but I was able to keep it a secret from everybody."

Yet despite what we now recognise as serious eating disorder, it was 50 years before Gilhome was treated. Instead, she was diagnosed with depression, and not once in 18 years of seeing the same psychiatrist did they suggest she might have an eating disorder.

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Her experience with the medical system was "certainly wanting", she said. There was the time she was admitted to the mood clinic at hospital, but couldn't understand why she wasn't in the eating disorder clinic instead.

"Perhaps they thought a middle-aged woman with young kids couldn't have an eating disorder."

Source: InsideOut Institute.

More than one million Australians are thought to be affected by eating disorders, but the medical system is still figuring out how best to treat them.

Historically, there has been a lack of clarity about which clinical system holds primary responsibility for treatment.

But as endocrinologist at Royal Prince Alfred Hospital,  Dr Ian Caterson, told ten daily, it's a major issue that needs to be handled by coordinated care team including physicians, psychiatrists, psychologists, nurses, dietitians, and GPs.

"Part of the challenge is that eating disorders need to be recognised as the serious disease that it is," he said.

"You see the really serious cases, people who are presented to emergency departments with major issues, but there are many, many people in not-quite-so life threatening situations with an eating disorder, where it's not being recognised early enough, or at all."

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'The Good Place' actress Jameela Jamil, who spent years dealing with an eating disorder, has become a voice against society's obsession with weight through her #IWeigh campaign. Photo: Getty.

This week more than 45 of NSW leading medical specialists have come together at the newly launched InsideOut Institute to look at new ways to treat eating disorders.

The groundbreaking work is being led by Caterson and Dr Nick O'Connor, a psychiatrist and clinical director of North Shore Ryde Mental Health Service.

"Eating disorders originate in the mind and manifest in the body, yet, historically, physicians and psychiatrists have worked somewhat independently with these patients, resulting in fragmented care," said Caterson.

It's an enormously complex disease to treat, said O'Connor, and improving the general education of medical and health professionals in the community is a vital step.

Netflix's film 'To The Bone' was widely praised as an honest portrayal of eating disorders. Photo: Netflix.

Stigma is still something people dealing with eating disorders have to overcome. There's a prevailing reputation that eating disorders are the domain of young, white, affluent women, which is not only untrue but can prevent people from seeking treatment.

"People think that it's not a real disorder," said Danielle Maloney, deputy director of the InsideOut Institute.

"They see it as a lifestyle choice. The public needs to know that is is a really serious illness, and people experiencing one need to get help."

Gilhome could not agree more. "The one thing I'd say to people experiencing an eating disorder is that you do not have to be ashamed and guilty," she said.

"It's not your fault. It's absolutely not your fault that you are like this. And as horrible as it seems to talk to someone, find somebody."

Contact the author: abrucesmith@networkten.com.au

To talk to somebody about disordered eating, speak to your local GP, contact one of the specialists listed by the InsideOut Institute, or for confidential support, call the Butterfly Foundation on 1800 33 4673.