A MONSTER is preying on Sunshine Coast teens, taking its victims down a terrifying "rabbit hole" and tearing families apart.
Eating disorders are the deadliest of mental illnesses, with mortality rates among sufferers 12 times that of the general Australian population.
But they are an invisible "monster", Coast parents of sufferers say, because of the stigma and misinformation that still surrounds them.
Eating disorders are most commonly diagnosed in teenagers and include anorexia nervosa, bulimia nervosa, binge-eating disorder and other specified feeding and eating disorders.
Unlike anxiety and depression, which have become accepted in the wider community as medical conditions, the stigma around eating disorders is so pervasive and the illnesses so complex that some medical and allied health professionals still misunderstand it.
Three groups of Coast parents whose daughters are battling anorexia nervosa spoke to the Daily on condition of anonymity to protect their children from potentially harmful effects of having their personal stories published.
They share a longterm vision for the Coast to become a beacon of hope and survival for people with eating disorders and their loved ones, but say a few key obstacles including the reform of privacy legislation allowing parents to be "shut out" of their teen and adult offspring's care need to be overcome first.
One couple, who we'll call Steve and Sally, had just returned from the mental health ward where their daughter has lived for the last two years.
When she was admitted to hospital they were told she had five days to live because of the effect extended starvation had had on her organs.
"Everything was shutting down," Sally said. "Not just her brain, but her heart and everything else."
She's still alive, but self-harms and has attempted suicide. Last week she begged her parents to let her die, Steve said.
"She's so tired...she's said, 'I'm just so tired, just let me go'," Steve said.
Their daughter was "very bright" and articulate, and Sally and Steve believe one of the reasons she's still "going from bad to worse" is that she's able to convince medical professionals she's doing well when she's not.
"When she gets to a certain BMI (body mass index), a certain health, she will then pretend that everything's right," Sally said.
"She'll...talk the talk and walk the walk. But it's not true.
"She'll tell them what they want to hear."
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Frank agrees. He said one of the more "horrendous" experiences he's had was being told by medical professionals he was to blame for his teenage daughter's anorexia nervosa.
He was shut out of discussions about her treatment at his daughter's request, and condemned to watching her "fade away" in front of his eyes.
"You know what your child's like and you know what it's like when this monster kidnaps your child," he said.
"A kid can go to the medical professional and tell them their story but they don't understand what it is - and what a controlling, manipulative monster this disorder is."
Anne, whose teen daughter is not in hospital but has been diagnosed and doesn't admit to the illness.
She said privacy laws that made psychologists, allied health professionals and "medicos" feel they couldn't discuss their client's situation with her carer or parent meant that can't treat the patient successfully.
"The carer says, 'actually, that is not the truth," she said.
"She's been cutting out food groups, having an absolute fear about gaining weight."
Anne said a professional "can't 100% treat the patient, because they're not getting the whole story.
"They're not treating the whole case."
Federal member for Fisher Andrew Wallace is lobbying his own government for change to privacy laws to better include parents and carers.
One of his daughters nearly died from anorexia nervosa, which saw her hospitalised at a secure mental health facility at the age of 10.
He said children who were sick would often, as a form of punishment to their parents, ask their treating physicians: 'I don't want you to tell my parents what is happening'.
"The doctors and nurses go into lock-down," he said, referring to his own experience and accounts Coast parents had shared with him.
"They treat you appallingly, because the teen child has decided for whatever reason to lock you out."
He told the Daily he has discussed the perverse outcomes of existing privacy laws with Health Minister Susan Ley.
"If a person is in hospital because of their mental incapacity, they shouldn't have the capacity to lock out their family from any knowledge of their treatment," he said.
It was easy for youngsters with anorexia nervosa who lived at home to resent their parents, even when parents full-time occupation was to care for them and help them survive the disease, Anne said.
"There is no quick fix, no tablet," she said. "The only medicine is food."
Food is the enemy of the illness, and when the "monster" has taken hold, parents say anyone providing food and encouragement can be a target.
"You can't believe it's actually your child," Anne said.
"The moment I stepped in as carer and said, 'you need to eat this and this', it escalates to a point where it's almost psychotic.
"It has got to be one of the most evil and detrimental illnesses I've ever come across, and unfortunately some people believe this illness is a choice.
"You can tell, living with it, that it's not a choice.
"They're vacant at times. You can see this fight's within their own mind."
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