It is the deadliest mental health condition, but specialists say treatments have not progressed for 40 years, largely because of perceptions of who gets it.
Anorexia is seen as a disease of “young, white, affluent females”, experts including researcher Andrea Phillipou say. Despite increased knowledge about its psychiatric drivers, people wrongly see it as tantamount to a self-inflicted problem of the privileged.
The illness that claims the lives of 20 per cent of sufferers within 20 years is still “trivialised”, says Phillipou, principal research fellow at Orygen and Melbourne University’s Centre for Youth Mental Health.
As much as she and her prestigious institution – helmed by former Australian of the Year Professor Pat McGorry – have tried, they could not raise government or philanthropic funding to continue brain research that promises one of the first breakthroughs in decades.
Orygen’s trial of non-invasive stimulation to a brain area linked to anorexia, which was published in August, produced “meaningful improvement” in 75 per cent of participants, but will need to cease at the end of June because its funding has lapsed.
Butterfly Foundation chief executive Jim Hungerford says this is consistent with dangerously low support for prevention and treatment research, even as the desperation grows.
“We track if people [who call the national Butterfly helpline] are at risk of harming themselves, or of medical crisis and clinical risk. The proportion of those considering harming themselves, or suicide, has gone up fourfold from 2020 to 2024,” he says.
The organisation’s five-year-old national residential treatment centre, Wandi Nerida in Queensland, has a six-month waiting list across demographics. Yet eating disorders are still dismissed by many as something only affluent girls get.
“The way it gets depicted is people blame, there are all these stereotypes: whenever you mention an eating disorder the image that comes to the bulk of people’s mind is a young white girl,” he says. “That is a very small fraction, and it can affect all genders.”
Phillipou watched her beloved aunt die of anorexia at 35 after a decades-long struggle, and agrees with Hungerford. “If this were a condition that affected more males, there would be much more investment,” she says.
In 2023, more Australians died of eating disorders – 1273 – than were killed on the roads (1266). Contacts to the Butterfly National Helpline have increased by 125 per cent in the past 10 years, from just under 10,000 in 2016, to 24,500 in 2026, but “globally, anorexia, it is one of the most underfunded mental health conditions”, says Phillipou.
In five decades of treating patients among the 1.1 million Australians with eating disorders – the highest rate globally – psychiatrist Professor Richard Newton has witnessed bias and gender discrimination even within the mental health profession.
“We know that people with an eating disorder are regarded more negatively by some mental health clinicians, even than people with personality disorders; they are very stigmatised,” said Newton, a board member at the Royal Australian and New Zealand College of Psychiatrists.
“A lot of psychiatrists are very reluctant to see people with eating disorders because they don’t have the training and because of their own feelings about eating disorders. We know this from research.”
‘Almost one in six people (17%) believe that eating disorders are a lifestyle choice or about vanity.’
Butterfly Foundation Community Insights report
Medical training does not prepare clinicians to understand the conditions, in part because research is scant due to funding rates influenced by negative attitudes. New treatment development has stalled for similar reasons.
McGorry became strongly interested in the impact of eating disorders as they spiralled during the pandemic, and has since learnt “they are not taken seriously by the research world: people die, the mortality is significant and the morbidity [sickness] and suffering is terrible, especially for the family”.
“The family-based treatment model [which relies on parents to enforce refeeding using specific amounts of food at regular times, and can result in great conflict] is all they get,” McGorry said. “The damage to families is significant; it’s so difficult to manage.”
Eating disorders are the only mental health condition whose rates have continued to increase, rather than plateau, after a general COVID-induced spike, but Richard Newton says they remain “woefully misunderstood” – as demonstrated by the Butterfly Foundation’s Community Insights Report 2024. It found one in six Australians believe they are “a lifestyle choice about vanity”.
One in six (16 per cent) “perceive eating disorders as a sign of weakness”, the report found, and one in seven (14 per cent) agree people with eating disorders could “snap out of it”. The truth is that only about half of anorexia and bulimia patients currently recover.
Newton says gendered stigma remains a hurdle. “Of course there is misogyny, and it’s felt by men with eating disorders too; they feel they’re not allowed to have eating disorders because they’re blokes, and it’s somehow emasculating,” he says.
As an anorexia sufferer from late childhood into early adolescence, survivor Sarah Bonavia, now 29, has heard the kind of attitudes specialists like Newton and McGorry are working to dispel.
While researchers attempt to progress neurological treatments, Bonavia represents a new form of therapy that Alfred Hospital psychiatry leaders believe could provide young patients with a “sliding doors” opportunity to exit the cycle of relapse, hospital readmission and chronic illness.
Bonavia, a psychology student, is one of the 40 per cent of staff at The Alfred Health’s pilot Eating Disorders Intensive at Home service who have lived with eating disorders as a patient or parent. They work with families and clinicians in a new style known as open dialogue.
Bonavia developed anorexia in year 6 and has heard all the cliches.
“I’ve heard the affluence stuff, and I disagree with that: I was not from an affluent family,” she says. “Where I feel like [anorexia] came from with me was bullying and just wanting to fit in and belong and feeling pressure from people around me.”
Hers is the first face young people entering the 18-month-old service see. The Alfred’s infant, child and youth mental health lead, psychiatrist Dr Paul Denborough, says being met by a peer builds invaluable trust and helps young people stick with therapy, often avoiding the added trauma of repeated hospitalisation. Parents are also met by lived-experience peers.
“This is a totally treatable condition if you get onto it straight away; they [young people] end up living completely normal lives,” says Denborough.
“But it’s a sliding doors sort of thing: you can get trapped in it, and it’s terrible. It’s got the highest mortality rate of [psychiatric] illnesses, but you can avoid it if you have good programs in place.”
Denborough has seen how the new, collaborative approach helps young people feel less scared and angry about being brought to treatment for a condition that is often very resistant to it, and says it helps parents to get past guilt and shame.
When mother and family peer specialist Angie Baxter went through anorexia with her daughter, there were no such services, and parents still tell her they worry they may be doing more harm than good trying to help.
“They generally are extremely overwhelmed, and really lost,” she says. “It’s like they’re walking on eggshells, and they’re afraid to say anything. The first big barrier is, ‘how on Earth will I even get my child to an appointment?’ ”
Rather than focus immediately on clinical weight management, which traditionally put parents in the role of enforcer, the new model concentrates on keeping families connected as trust in treatment is built. Nurses and dieticians support the process on-site.
Though formal evaluation of the program is yet to be completed, social worker and program lead Rachel Barbara-May says it is already reducing hospitalisation or rehospitalisation of young patients, and appears to be paving the way for better support for people who have lived with misunderstanding for so long.
“This has dramatically shifted the culture of our service, how we speak, how we think,” says Denborough. “It’s just shameful we didn’t do it 20 years earlier.”
- The Butterfly Foundation helpline is on 1800 33 4673
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Wendy Tuohy is a senior writer focusing on social issues and those impacting women and girls.Connect via X or email.
