This article mentions eating disorders and suicide.
Daniella Silverstein was around 14 years old when her friend was diagnosed with anorexia. She was deep in her own struggle with restrictive eating, but unlike her friend, she wasn't thin enough for people to notice.
Anorexia is often associated with images of skeletal bodies, but the same disordered thinking that marks this condition can also be present in people who appear healthy.
"We're seeing quite a number of people who start their anorexia journey at a higher weight," Butterfly Foundation CEO Jim Hungerford told SBS News.
"So when they present to the doctor, they're at a normal weight range. And so they can't be diagnosed as anorexic because of the nature of the definition."
To be diagnosed with anorexia, someone must have a certain 'body mass index' (BMI)*, but the reliance on BMI for diagnosis is of concern to the Butterfly Foundation, which provides support services for those impacted by eating disorders and body image issues.
"The latest research demonstrates that the BMI is an inaccurate measure of health at an individual level, as there are many factors that contribute to a person's health other than weight alone," Hungerford said.
We're seeing quite a number of people who start their anorexia journey at a higher weightButterfly Foundation CEO Jim Hungerford
The Butterfly Foundation is advocating for a clinical approach that recognises the whole person — rather than focusing on weight — to improve the diagnosis of eating disorders and reduce weight stigma.
It has also supported removing terms including BMI, weight, calories and diets from school resources by the Australian Curriculum, Assessment and Reporting Authority.
Hungerford said it was impossible to judge whether or not a person had an eating disorder based on their body size and shape.
"We've had people who have tried to refer themselves into the medical system, but have been turned away, because they are not yet meeting the diagnostic criteria, so they can't get help," he said.
"And so they just suffer until they are terribly sick and (only) then they can get some support."
Looks can be deceiving
Melbourne resident Daniella, now 31, said she first became concerned with her looks after going through puberty and being a bit curvier than the women she was seeing in magazines and other media.
She was feeling a lot of pressure at school, to do well academically and to be accepted by her friends. There were family issues as well.
"So I started restricting (my eating) when I was 14. And I was complimented by people because I started losing weight, and people started noticing. And even though I was really suffering, it was socially accepted," she said.
What started as a few weeks of dieting turned into months of restrictive eating, before Daniella managed to pull herself out of the unhealthy pattern.
Over the next seven years, she continued to fall into new cycles of restricted eating.
"It took me seven years to get help, which is a really long time between onset and getting help," she said.
"No one noticed because in our society, we celebrate people losing weight, and people didn't know, and I didn't know, that you could have an eating disorder without being underweight."
She contrasted her experience with that of a friend who was diagnosed with anorexia around the same time that Daniella first developed her eating disorder when she was 14 or 15 years old.
People didn't know, and I didn't know, that you could have an eating disorder without being underweightDaniella Silverstein
Before being diagnosed, her friend had a smaller body, so when she lost a large amount of weight people noticed and she received intensive treatment relatively quickly.
"She had professionals working with her, and she had her friends and family around her, and she actually got better, and she left anorexia behind and she's gone to live a full life," Daniella said.
"I kind of wish that had happened for me. As scared as I was of getting help, I wish that I had known, and that other people had recognised, that you can have an eating disorder in an average or larger body size."
'People assumed I was struggling with overeating'
Because Daniella didn't seek treatment early, her eating disorder became worse, to the point where she says it began consuming more than 90 per cent of her thoughts.
"I couldn't focus on a conversation, I couldn't connect authentically with other people because I was always thinking about my weight, and food, and losing weight. It took over my life," she said.
"I wanted to eat but I couldn't, there was nothing that felt safe for me to eat anymore."
What is atypical anorexia?
Daniella was diagnosed with atypical anorexia, a condition which applies to people who are preoccupied with their weight or shape, and lose a significant amount of weight but are still considered to have a healthy BMI.
Therapy helped Daniella recognise she was using restrictive eating as a way to calm herself down when she was stressed. It also occurred in cycles, with periods of time when she had an active eating disorder, followed by what would be termed periods of "remission".
It still took Daniella years to begin telling friends and family about her condition. Their response was mostly supportive but there were some hurtful comments.
"I think people's immediate assumptions were that it must mean that I struggled with overeating," Daniella said.
"It did feel invalidating for that to be the reception. It wasn't everyone but a couple of people.
"People assumed that I couldn't have a restrictive eating disorder like anorexia."
Eating disorders are on the rise
A recent Deloitte report commissioned by the Butterfly Foundation revealed a 21 per cent increase in the number of people with eating disorders in Australia last year and a 36 per cent increase in the social and economic cost since 2012.
Eating disorders can include anorexia, bulimia, binge eating, restrictive food intake disorder, or other conditions like night eating syndrome, which causes people to wake several times a night to eat in order to fall back asleep.
"We're really concerned about all of this pressure that is being imposed on teenagers around appearance and behaviour — and that is really driving this escalation," Hungerford said.
"These days the highest prevalence of eating disorders is actually in teenagers, aged 15 to 19.
"It used to be that the highest prevalence was in young adults 20 to 24. It's now dropped down to 15 and 19."
The Deloitte report noted early identification and intervention could prevent cases from becoming more severe, and this was especially important given its impact on young people.
It could also reduce the economic costs associated with the conditions, which in 2023 were estimated to be around $20.8 billion in Australian health system costs, productivity and efficiency losses and other financial costs.
Hungerford said the government had never invested in programs for the prevention of eating disorders but they did work.
The Butterfly Foundation is calling on the government to invest $12 million a year into prevention programs, both at school and in the community, to try and address the problem.
Funding for virtual services
Health Minister Mark Butler said the government was aware more needed to be done in prevention but "treatment services for eating disorders remains the priority".
He said $70 million was being provided in grants for innovative programs to research and treat mental ill-health, including eating disorders.
"Programs to address gaps identified by people with lived experience of eating disorders and other experts will share in $20 million of funding," he told SBS News.
Health Minister Mark Butler says while more needed to be done in prevention, the treatment of eating disorders is the government's priority. Source: AAP / Mick Tsikas
"We have seen a worrying and significant deterioration in the mental health of children and a rise in self-harm and eating disorders," Butler said.
We have seen a worrying and significant deterioration in the mental health of children and a rise in self-harm and eating disordersHealth Minister Mark Butler
"This funding will back innovative ways to support people with eating disorders and mental ill-health and deliver better outcomes."
More people died from an eating disorder last year than in car accidents
Hungerford noted that 1,273 people died from an eating disorder in 2023, which is more than the number who died in car accidents across Australia.
"The rate of death by suicide by people who have got anorexia is incredibly high sadly, and the personal cost for somebody with anorexia is just shy of $100,000 per person (in health system and productivity costs, as well as the financial impact from the reduction in wellbeing due to things like distress and trauma)," he said.
Daniella said she still struggled with periods of remission with her atypical anorexia and hoped to change people's understanding of eating disorders so that others could seek help earlier.
"It was very painful to realise that I was losing weight and suffering so much and I was being complimented instead of being referred for support and help when I needed it so much," she said.
*The Butterfly Foundation does not wish to reveal the specific BMI related to anorexia diagnosis.
Readers seeking support for body image concerns and eating disorders can contact Butterfly Foundation on 1800 33 4673 or s. More information is available at .
Readers seeking crisis support can contact Lifeline on 13 11 14, the Suicide Call Back Service on 1300 659 467 and Kids Helpline on 1800 55 1800 (for young people aged up to 25). More information and support with mental health is available at and on 1300 22 4636.
