Anorexia is the deadliest mental health condition. Experts say we are treating it completely wrong

Deanna De Cicco Carr has an early memory of being at a friend’s birthday at the age of 10 or 12 and adults shaming kids for eating party food.

“We were, like eating chips and I had someone come up and say, ‘you guys won’t be able to be pretty [and] little forever if you’re eating snacks like that’,” says the now 26-year-old.

Deanna De Cicco Carr says she could get access to treatment for the mental illness, anorexia nervosa, only when her weight was dangerously low, dubbing the quest for care, “the sick Olympics”.Credit: Luis Enrique Ascui

“This really sticks with you because as a child, you aren’t actually thinking about food that way.”

She cannot pinpoint the moment when what became full-blown and life-threatening anorexia nervosa began, putting De Cicco Carr (at the time) among the 27 per cent of Australian eating disorder patients who are aged 10-19.

But by the age of 15, the mental illness was so entrenched she knew she needed treatment. She eventually became so unwell that De Cicco Carr required tube feeding for many weeks.

In the years since, she has survived being deemed “medically unstable” because of anorexia relapse many times.

“It started off where I just felt really unhappy with my body/myself, and there was lots of conversation at school about dieting, and I had seen people diet around me,” she says.

“My whole life, my mum, my friends and my friends’ mums would diet and people would always be talking about dieting: when you see that, you start to think, ‘Oh maybe there is something bad with the way I look’.”

A disturbing reality De Cicco Carr learned while seeking treatment in the public hospital system was that unless her body weight was considered dangerously low, she had great difficulty accessing physical or mental health care for anorexia.

“I refer to it as the ‘sick Olympics’: eating disorders are quite competitive [with one’s own, mental ill-health ideals] by nature, and are fuelled by the healthcare system that is supposed to be there, but is only there to help the people who are the most physically unwell with eating disorders,” she says.

And even then, she found the emphasis to be on physical weight improvement, and not on quality mental healthcare for the underlying causes. Thankfully, after three months in private residential treatment, De Cicco Carr has achieved recovery stable enough to have conceived her first child and be well into a healthy pregnancy.

Anorexia nervosa is considered the mental health condition with the highest mortality rate, in part because only about half of patients respond to treatment methods developed decades ago.

Up to 10 per cent of those with the disease lose their lives to it within 10 years of getting it, and up to 20 per cent will pass away because of it within 20 years.

Associate Professor Andrea Phillipou, of Orygen and the Centre for Youth Mental Health at the University of Melbourne, decided to research the illness after seeing her 35-year-old aunt die of it.

In Australia, 1.1 million people live with an eating disorder, and 1273 people died of them in 2023, a higher toll than those killed on the roads.

Data provided by Orygen the National Centre of Excellence for Youth Mental Health shows that since 2012, the incidence of eating disorders among those under 19 has increased by 86 per cent.

Meanwhile, progress towards more effective treatments has been hindered by stigma, including the mistaken belief that anorexia nervosa affects only “young, affluent white females”, according to a paper to be published on Thursday in the journal, JAMA Psychiatry.

Associate Professor Andrea Phillipou, a co-author and principal research fellow in eating disorders at Orygen and the Centre for Youth Mental Health at the University of Melbourne, describes anorexia as “an unbelievably under-funded area of research – a lot of it is [down to] stigma associated with eating disorders: they are still seen as a trivial thing that only affects young, white affluent women”.

Despite some promising developments, current treatment outcomes are “unacceptably poor”, and a narrow focus on weight restoration is a key reason medical understanding and effective treatment lags.

“Anorexia can be and is life-threatening in a lot of circumstances, and weight restoration is usually the main outcome [of current treatments]; we want to stabilise people and get the weight restored, but this has taken away from the fact this is a psychological condition,” Phillipou says.

“We need to also focus on the psychological aspect driving the eating disorder.”

Because anorexia is one of the few mental illnesses to also require a physical diagnosis, its treatment and research into better approaches has been “siloed” and held back decades.

Phillipou describes the paper, co-authored with global experts from King’s College, London, and Harvard Medical School, as a call to action for research that treats anorexia holistically, as a physical and as a mental health condition. She says that approach will boost understanding of what causes the condition and in turn promote more modern and effective treatments.

“Recovery rates haven’t budged in about 50 years, we’re still getting the same poor responses to treatments ... and that’s on the treatments, it’s not the individual or the family’s fault,” she says. “It’s been decades since we’ve had any innovation in treatments.”

Clinical psychologist Sarah Cox, manager of the Butterfly Foundation National Helpline, agrees with the paper, Anorexia Nervosa—Facts, Frustrations, and the Future, that treatments and research have been stymied by bias and misconceptions.

“A lot of people still believe [anorexia] is a lifestyle choice, but eating disorders are very serious mental illnesses; people can’t just make a choice to turn that on or off, they need the right treatment support and compassion,” Cox says.

On World Eating Disorders Action Day, on Monday, the Butterfly Foundation released statistics stating that one in seven people believe those with eating disorders could “snap out of it”, and one in six people “perceive eating disorders as a sign of weakness”.

Cox said these ideas must be challenged because they could contribute to patients missing out on early intervention, which could be vital to prevent the illnesses progressing to a life-threatening stage.

She said clinical experience backed up the claim in Phillipou’s JAMA paper that anorexia patients were “often falling in the gap between physical and mental healthcare”.

“Something we hear from people we support is people can slip through the cracks because they might be considered not being of a low enough weight for some treatment options, and being of too low a weight for others,” Cox said.

“Sometimes they are hitting that crisis point before they can join the public or private systems.”

She described the paper demanding a rethink in anorexia research and treatment as a powerful and important step in highlighting reasons that progress for patients had been so slow, “and trying to point to possible solutions to correct it”.

For support with eating disorders/body dissatisfaction, call the Butterfly National Helpline on 1800 ED HOPE (1800 33 4673) or visit www.butterfly.org.au to chat online or email.

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