'Misunderstood' disorders eating away at heart of families
AFTER being told she had just one week to live, Auckland-born Millie Thomas travelled to the Sunshine Coast to die "in her happy place".
Her life had been consumed by anorexia when her GP gave her the ultimatum of another recovery effort or death.
She said her body had been "literally breaking down" and after her previous treatment team had lost hope in her recovery, she decided she would rather die.
Today, Ms Thomas is fully recovered, still living on the Coast, and works as an eating disorder recovery coach offering her guidance and lived experience to sufferers.
Member for Fisher Andrew Wallace, whose family has "been touched by eating disorders for many years", said about 3.2 million Australians either had an eating disorder or knew someone who was suffering.
Although eating disorders are not a topic of recently published research, a 2008 study found that they were becoming increasingly prevalent, with about one-in-20 Australians suffering.
However, the Butterfly Foundation said that just 25 per cent of Australians with an eating disorder were known to the health system, identifying both the health system and society's lack of education, stereotyping and associated stigma around the illness as limitations.
Mark and Gayle Forbes are among thousands of Australian families affected. The Buddina parents found themselves without hope during a 20-year battle with "a system that did not work", when both of their daughters were undergoing treatment for bulimia.
Mr Forbes said it was incredibly common for an eating disorder to go unnoticed in a home for a long time, as it was for his family.
"It slowly creeps in ... it was under our roof for three years and we didn't know," Mr Forbes said.
It was not until a combination of continued weight loss, mood swings and later evidence of binge-eating and vomiting that the couple realised their first daughter was ill.
Like Ms Thomas, ongoing recovery facilities failed the Forbes' daughters.
The couple started chatting with like-minded parents who they found shared the burden of having "exhausted all avenues".
Mr and Mrs Forbes then took matters into their own hands by founding the charity EndED. Mr Wallace has worked closely with EndED after his daughter suffered anorexia.
"When you hear about and experience the grief and pain as a family, it is hard to not be passionate about raising awareness," Mr Wallace said.
What started as fortnightly meetings at the Forbes' house for parents and carers to share their journey concluded in the knowledge that Australia was behind the rest of the world for treatment options.
They looked at the success of America and the United Kingdom which offer live-in residential facilities and thought they would "do something about it and build the first one".
Now EndED, in collaboration with the Butterfly Foundation, is pioneering Australia's first holistic approach to treating eating disorders with construction of the EndED Butterfly House at the Forbes' property in Mooloolah Valley.
The Butterfly House will be "a big Queenslander", and lack any resemblance to a hospital.
The secluded hills will house up to 12 patients at a time, providing therapy far beyond medical treatment.
Hypnotherapy, dance, yoga and art are some of the well-being focused activities on offer.
Patients can also relax from treatment by visiting the vegetable garden, pond or ever-growing animal family of horses, chickens and two miniature pigs named Hope and Bob.
Mr Wallace said he considered himself very fortunate to be in the position as Federal Member to help effect this change.
Last month, he was joined by Mr Forbes in parliament during the Federal Budget, where he announced the government would be providing a guaranteed $4.5 million to the construction of the facility in addition to the $1.5 million he announced last year.
"To actually watch a loved one slowly die before your very eyes, you can't just stand back and watch that happen to other families," Mr Wallace said.
The Butterfly House is part of the government's $70.2 million plan to establish a further six residential eating disorder facilities across Australia. Mr Wallace said the funding could be attributed to the LNP's economic leadership that had allowed it to allocate financial surplus to mental health.
A lack in funding of treatment for mental health disorders could lead to fatal outcomes.
Anorexia nervosa has the highest mortality rate of all psychiatric illnesses, including a high risk of suicide, according to a meta-analysis by Arch Gen Psychiatry.
"The damage and the absolute carnage that this causes to families, friends and workplaces... we're failing them as a society," Mr Wallace said.
He said people who suffered from eating disorders were "often very mentally unwell ... what to us might seem normal is incredibly hard for them".
"I know from my own experience I used to think 'just open your mouth, put some food in there, chew and then swallow. This is not rocket science'," he said.
"Eating disorders are still, unfortunately, something as a society we don't like to talk about - it's very misunderstood."
Mr Forbes likened today's misunderstanding of eating disorders to that of depression in the past.
"Depression years ago was a very taboo subject, but because of all the work by Beyond Blue, people are a lot more open to discuss their issues," he said.
"That's where we want to get eating disorders to."
Is there enough support for people suffering with eating disorders?
This poll ended on 03 July 2019.
Yes. There's plenty of help available.
No. More help is definitely needed.
I'm not sure.
This is not a scientific poll. The results reflect only the opinions of those who chose to participate.
The lack of knowledge surrounding eating disorders was clear in Parliament when Senator Deborah O'Neill and Department of Health Deputy Secretary Caroline Edwards debated what would deem an eating disorder as serious.
Senator O'Neill said all eating disorders had individual and complex needs and every situation should be considered serious.
Ms Thomas said our culture had been engrained by the stereotypical idea of what an eating disorder should look like.
"The media shows images of people stepping on to scales with bones sticking out which then makes people think if they're not that skinny, then they're not worthy of treatment and they don't have an eating disorder," she said.
This traditional portrayal is a false representation of the reality faced by most with the disorder.
Seventy per cent of my clients, if you saw them walking down the street, you would not think they had an eating disorder...they have raging eating disorders, yet they look normal," Ms Thomas said.
Although female adolescents are the most susceptible and have the highest rate of eating disorders, the National Eating Disorders Collaboration concluded that anyone was at risk. In Australia, males account for a quarter of anorexia sufferers and half the population with binge-eating disorders.
Ms Thomas said it was vital to remember that eating disorders did not discriminate.
She said promoting a variety of treatment options and employing qualified, lived-experience professionals like herself as qualified recovery coaches were essential in out-smarting and breaking down eating disorders.
It is the support, guidance and communication-driven connection offered by EndED that Ms Thomas said would create a positive social movement.
EndED aspires to defeat the stigma associated with eating disorders and ultimately empower patients to have hope in recovery.
"For my patients, I am living, breathing proof that full recovery is possible," she said.
"And there is life after recovery."
If you or someone you know is suffering from an eating disorder, call the Butterfly Foundation National Helpline on 1800334673 or call EndED on Old Gympie Rd, Mooloolah, on 0407592932.