Laurence Cobbaert’s eating disorder behaviours were mischaracterised and misunderstood when they were diagnosed with anorexia six years ago.

For the 34-year-old University of NSW PhD candidate, who is bisexual and non-binary, prolonged stays in hospital came at a time when they were still coming to terms with their own identity, and after years of being bullied in school for looking and talking “like a man”.

Experts fear a lack of data is leading to poor treatment for queer people with eating disorders and believe the rates of conditions such as anorexia far exceed those in the general population.

“Clinicians will say you are restricting your food intake because you want to change your shape and be thinner; but sometimes it is more complex than that,” Cobbaert said.

“People may use food restriction as a way to make their physical appearance more aligned with their gender identity, and a change to that can be distressing in a different way.”

Launching at Sydney’s Mardi Gras Fair Day on Sunday, the EveryBODY Welcome campaign is a rare collaboration between Australia’s seven eating disorder organisations, bringing together services for sufferers, families and clinicians, as well as research groups.

The campaign will encourage LGBTQ+ people to seek support for disordered eating and coincide with Australia’s first national survey on the subject, led by the University of Sydney and Sydney Local Health District’s InsideOut Institute.

Clinical psychologist Dr Jane Miskovic-Wheatley, who is leading the study, said traditional treatment may ignore identity-related reasons for disordered eating, with overseas research suggesting more than half of queer young people have been diagnosed with an eating disorder.

“We still need to understand things from a medical and nutritional point of view, but we have a system that pigeonholes people based on an experience from a very mainstream population,” she said.

Miskovic-Wheatley said identity concerns were likely only one part of why the community disproportionately reported disordered eating habits.

“When it comes to the risk factors for someone having an eating disorder, there’s social isolation, anxiety, feeling as if they cannot speak, traumatic experience. We know these are all prevalent in the LGBT community,” she said.

A 2018 US survey of more than 1000 queer people aged 13 to 24 found 54 per cent had been diagnosed with an eating disorder, a figure that rose to 71 per cent among participants who identified as transgender, most commonly anorexia.

Research conducted by Australia’s Butterfly Foundation in 2021 found two-thirds of a smaller sample of transgender young people had limited their eating because of their gender identity, while about a quarter had a current or previous eating disorder diagnosis.

The IncludED study will be the first large-scale attempt to quantify the problem in Australia, where about a million people – or 4 per cent of the population – live with an eating disorder at any time.

The anonymous online survey will seek to quantify the prevalence of eating disorders among people who identify as sexually or gender diverse, as well as gather their lived experiences. Researchers hope that by understanding exercise and eating behaviours in the community, they will be able to develop recommendations for screening – i.e. signs that someone is displaying unhealthy behaviours – and treatment.

“Traditionally, the LGBTQIA+ community has faced unique barriers to seeking understanding, support and treatment, including stigma, discrimination and a lack of gender-affirming care. We need to do better,” said Marcellinus Kim, eating disorder co-ordinator at Sydney Local Health District.

Last year, the Australia and New Zealand Academy for Eating Disorders introduced an online database of credentialed clinicians who had completed specialised training that included considerations for queer patients.

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