Parents and former sufferers of eating disorders have spoken up during the launch of The InsideOut Institute - an Australian first.
Liam Manning had no idea men could experience eating disorders before he ended up in a hospital for anorexia nervosa in Year 11.
At the launch of The InsideOut Institute - the first Australian institute dedicated solely to researching eating disorders - Manning spoke about the difficulties he faced in seeking treatment.
"Living in Dubbo I was having to travel sometimes two hours each way, once or twice a week, to get the help I needed," the 20-year-old told AAP.
"I wasn't able to keep a stable GP, I had doctors, psychiatrists and psychologists leave on me."
A stable network is paramount in preventing relapse - something Manning experienced multiple times.
After dropping from 68 to 54 kilograms in roughly six months Manning was admitted to hospital in Year 11.
"Two months after my admission into hospital, I dealt with such horrible shame, thinking this was an illness that could only affect women," he said.
"When an individual gets an eating disorder, their family gets an eating disorder, their friend group gets an eating disorder."
A married couple who've helped their daughter deal with anorexia nervosa on-and-off for 18 years was also at Monday's launch at the University of Sydney.
The insidiousness of the disease has consumed almost two decades of their lives, they told AAP.
"Right now she's in total denial. It's very hard when you have a child that is essentially rejecting you - both parents - and even her own siblings."
In the past 18 months, their daughter has been in and out of hospital four times. She's experienced liver, heart and white blood cell problems.
"You survive by knowing it's not her, it's not your child. When she's alright - and it's rare - she's fantastic. But while she's in this current state she's impossible."
The power of the mental illness is something Manning only understands in hindsight.
"It's very hard to rationalise with somebody caught in the grips of an eating disorder," he said.
The InsideOut Institute is a collaboration between Sydney Local Health District and the University of Sydney's Charles Perkins Centre.