When Jennifer Dunstone was diagnosed with an eating disorder seven years ago, she was forced to leave her friends and family in the ACT to seek treatment interstate.
Ms Dunstone bounced from Sydney to Melbourne to attend day programs and inpatient facilities to tackle anorexia nervosa, a condition she had been dealing with for years before she was formally diagnosed.
Demand for eating disorder services skyrocketed through the pandemic, and while $26 million of federal funding to tackle the "hidden condition" has been welcomed, experts say there is much more work to be done.
The ACT has lacked support services for eating disorders, forcing Canberrans interstate for treatment.
Two facilities are set to open in the near future including the ACT's first inpatient facility, for which there is no delivery date as the first instalment of federal funding - promised in 2016 - is set to drop.
A separate $2.2 million ACT government-funded clinical hub is due to be in operation next financial year.
While Ms Dunstone continues to tackle anorexia, she is now part of a reference group, alongside medical experts, helping determine the gaps in Canberra's system and how they can be fixed.
Since Ms Dunstone was diagnosed with Crohn's disease 12 years ago, she started to change her diet when the eating disorder slowly took over.
"It spiralled ... there's so many factors around what creates [an eating disorder] and then what continues them," she said.
"Something that started off as, 'I'm trying to do my best to get as healthy as I can', then just became my life, and eating disorders they take over your entire life."
Ms Dunstone has been in and out of inpatient facilities and day programs to tackle the disorder.
"Unfortunately, a lot of that had to happen interstate because we just don't have the facilities here that I needed," she said.
Through the Covid lockdown, she travelled from Canberra to Sydney twice a week to attend therapy at a day program.
"It was a medical exception, so I was able to do that but it was definitely not best practice," she said.
"We actually had nothing in Canberra ... this was the only thing getting me by."
There are currently two avenues for Canberrans with eating disorders to get help - the Eating Disorder Program in Phillip and inpatient services at Canberra and Calvary hospitals.
An Eating Disorders Specialist Clinical Hub, funded by the ACT government, is set to open next financial year.
"[The hub] is intended to be the single point of entry for all people requiring access to community-based eating disorders service in the ACT," an ACT Health spokeswoman said.
Meanwhile, work on Canberra's first inpatient facility is well under way.
The first instalment of $13.5 million from the federal government for the centre, to be doled out over three years, will be available this financial year.
"Planning for the establishment of the centre, including the development of model of care and selection of a suitable site, is under way," the ACT Health spokeswoman said.
"There has been a strong focus on capturing community and lived-experience perspectives during the planning phase's consultation process, to ensure that the service will meet community needs."
That funding was included in the $26.9 million for eating disorders in the 2021 federal budget as part of a $350 million investment in women's health.
"I found that a bit uncomfortable, because it is not just a women's issue by any means," Ms Dunstone said.
"There's a lot of miscommunication that this is a disease that affects young teenage girls.
"It's not about being thin or looking a particular way, I couldn't give a crap about that. It's just about what your head is telling you."
Butterfly Foundation's Melissa Wilton said demand for its national helpline increased 35 per cent from March 2020 to February 2021.
There was a 116 per cent spike in use of its web chat service in that period.
"That spike has been both because people have been relapsing ... but also we've seen quite a large number of people who are experiencing eating disorders for the first time," Ms Wilton said.
She said more carers had been reaching out for support since the lockdown was imposed.
Butterfly Foundation welcomed federal funding to increase services and treatment across the country, and Ms Wilton said there was already a lot of pressure on existing services.
"We know that we are referring people on the helpline [to organisations], which potentially have long waiting lists," Ms Wilton said.
"The average period [to have] an eating disorder is about seven years as it is, and that's if people can get treatment and support."
She said only a quarter of people with a disorder were seeking treatment for it.
"If people are seeking treatment and unable to get it, then obviously that's going to have really dire consequences," she said.
- Butterfly Foundation national helpline: 1800 33 4673
- Lifeline: 13 11 14
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