Kath Courts has been living with anorexia nervosa since she was 18.
Over the past eight years the 27-year-old has received hospital treatment and undergone various therapies for the life-threatening illness, and she’s currently in recovery.
Kath says one of the greatest sources of support has been The Butterfly Foundation, a government-funded organisation dedicated to helping people with eating disorders recover from, and survive, their illness.
“The fact that I’m still alive, to be honest, comes down to support I’ve had. The Butterfly Foundation support line has been one of those supports for me,” she tells Mamamia.
The helpline assists more than 1000 eating disorder sufferers each month, providing them with an hour of phone and web-based counselling.
Kath Courts. (Images supplied)
Despite the crucial role The Butterfly Foundation plays — and the fact it's the only eating disorder-dedicated support service in Australia — it could lose its funding next year under the Federal Department of Health's restructuring of online mental health services, which seeks to develop a centralised "portal".
CEO Christine Morgan has told the ABC the organisation only has 12 months of certain funding; after that, its fate lies in the balance.
Considering almost one million Australians live with anorexia, bulimia, binge eating disorder and eating disorders not otherwise specified, and have mortality rates twice that of the general population, this move could have widespread consequences.
Like many, Kath was devastated to hear the news this morning.
"My eating disorder has always thrived on the belief that I'm not good enough, and that there's no help for me. To see more and more services cut, it reinforces that belief... How can I keep fighting if everyone else keeps backing away?" she says.
"People die [from eating disorders], and I wish that's what people could understand. It feels like money is being prioritised over people's lives."
Watch: Is anorexia nervosa genetic? (Post continues after video.)
Kath, who lives in Sydney, has used The Butterfly Foundation helpline for a number of years; her first experience with it was during a trip overseas.
"I was struggling with being outside of my comfort zone and finding food quite unmanageable. It was a really stressful time. So I used the web service to talk to someone I knew would understand so I could get back onto a level playing field," the 27-year-old explains.
In the years since, it's become an invaluable source of practical advice, relief, and above all, understanding.
"I've always called them when I've been overwhelmed, when I felt quite self-destructive or reaching the end of my ability to cope. I know that they understand; they're not going to tell me to 'have a bath' or 'do self-care' — they're actually going to listen to what I'm saying and validate that," Kath says.
"Eating disorders can be really difficult for people to understand. To be able to tell someone, 'I'm terrified to eat my breakfast' and know they're going to understand that and not say, 'You just have to do it'... it's a life-saver." (Post continues after gallery.)
For Kath, one of the factors that set The Butterfly Foundation counsellors apart was their understanding that support needed to be consistent and long-term; that it wasn't simply a matter of solving 'emergencies' as they arose.
"I called another hotline once, and I was asked, 'Are you safe?' As soon as I said yes it was like having a casual conversation. It's like you have to be at a really extreme space to be offered support," Kath says.
In the past, she's also felt brushed off by GPs and other health professionals who told her that as her weight appeared stable, she must have been doing OK. There's a common misconception that an eating disorder sufferer's health is directly related to how they look or what they weigh, although this isn't the case.
"It's especially hard to be well in a society that's very food-focused. That's another thing Butterfly is really good at; they seem to have really healthy, normal attitudes, so it's easy to talk and not hear unhelpful feedback," Kath adds.
Someone living with an eating disorder is also faced with significant financial costs, which free services like The Butterfly Foundation's — which is available nationwide — can help alleviate.
As part of her recovery, Kath is currently receiving treatment through a day program, which involves psychotherapy and appointments with a dietitian. This will eventually be followed by an outpatient program.
These specialist appointments don't come cheap, and as Kath's been out of paid work for almost a year now it can be challenging to find the money to pay for them.
"As soon as I'm worried about finances, I won't go to my appointments. Then who am I talking to? Where am I getting that support?" she says.
"This is where things like the support line come in handy, because it's extra support you can go to at any time because it's not reliant on you having the money to afford it."
Ultimately, Kath says abandoning specialist support for eating disorders in favour of a more generalised approach is a dangerous move.
"It's so hard to get help anyway; a lot of people aren't trained to know what to do or what to look for. It's easy to go under the radar," she says.
"If you take away care from people trying to recovery from an eating disorder, you leave them in a very dangerous position."
Has the Butterfly Foundation helped you?