Tara Powell struggles to get out of bed each day but doesn't want to die knowing she will be remembered as the girl with anorexia.

The disease, often misunderstood, has dogged the Warilla 23-year-old since she was 14.

Her life is a blur of feeding tubes, drips, and physical and emotional turmoil.

"I don't want this to be what my life was about," Ms Powell said this week. "I may end up being another statistic soon, as morbid as that sounds, but at the moment it's a reality.

"I want my life to stand for something else."

Ms Powell is not the first woman from the Illawarra to share her private hell while battling anorexia.

She is one of thousands living in a state that offers just a handful of designated eating disorder hospital beds. Living outside Sydney exacerbates their feelings of isolation.

Ella Graham, a Sydney nurse with a bright future, started up the Fed Up NSW Health lobby group to demand more government funding for eating disorder treatment.

Last October, she shared her experiences to help the 900,000 Australians already diagnosed with an eating disorder.

Today she is back in hospital, hanging on for dear life.

Ms Graham's campaign gave women like Rebekah McAlinden, of North Wollongong, the courage to speak out.

After battling anorexia and bulimia nervosa, Ms McAlinden pulled through with the support of her church community and Illawarra health workers.

She told the Mercury nine months ago she was living in Gerringong, looking forward to her 20th birthday and studying for an Advanced Diploma of Theology.

Back then the bubbly young woman considered herself "recovered". Today she too is back in hospital battling her demons.

And now we meet Ms Powell, another woman teetering on the edge.

But even if she was offered a bed tomorrow, she's not sure she would take it.

"I'm on the waiting list for yet another admission into Wesley Hospital [a private facility]," Ms Powell said.

"The waiting list is six to eight weeks long. In six to eight weeks I will most likely be too unwell to be admitted so even if there was a bed I wouldn't want it," she said.

"They only put a band-aid on this car crash wound. I get stabilised and then sent home only to relapse worse than ever before."

Ms Powell, who put her graduate diploma in primary education on hold because of her poor physical and mental health, can only wonder how she would have fared had she received more support in the early years of the disease.

"I may not be where I am now," she said.

"This is not about me any more. I want to know I tried to do something good before it's too late. I don't want the help for myself - I want it for the others out there who can't afford treatment, who are on waiting lists for months, sometimes years.

"For the outpatient teams across the state to improve treatment programs and offer more intensive therapy, maybe even day programs."

Australian women are more likely to have a diagnosed eating disorder in their lifetime than they are to have breast cancer.

Victims and their families struggle to understand why it's so hard to get help.

Three of the five dedicated ED beds in NSW are at Westmead Hospital and only available to the Westmead catchment area.

"That leaves only two state-wide eating disorder beds for the whole of NSW and with over 30 patients on the waiting list, the wait could be years," Ms Graham said yesterday.

The other two beds are at Royal Prince Alfred Hospital.

After two weeks at Westmead, Ms Graham left on Wednesday for private treatment in Geelong.

"It's so hard having to travel away from friends and my existing treatment and support but the treatment does nothing to heal the mind - it is just focused on the body," she said.

"They tried their best. It was hard for the staff given they have very little training, support or resources to run an effective eating disorders program."

For those with private health insurance, there are two NSW private hospitals with eating disorder treatment programs. Both have a four to 12-week waiting list.

Outpatient treatment is costly. Medicare provides a rebate for 10 sessions with a psychologist a calendar year.

But for anyone with an eating disorder, 10 sessions barely scratch the surface of the deep-seated psychological issues involved.

A 2012 report by Deloitte Access Economics and the Butterfly Foundation found private health insurance was falling well short of covering the treatment needed.

Sufferers were grateful their insurance covered most of their hospital costs, the report found, but it failed to cover a majority of their other costs, or left large out-of-pocket "cost gaps" between what was reimbursed and actual fees for GPs, counselling and dieticians.

"Given eating disorders are long-lasting and complex to treat, it would help people if such multidisciplinary costs could be covered by insurance," the report said.

Based on a recent meta-analysis (the gold standard of health research), mortality rates are almost twice as high for people with eating disorders than in the general population.

The total financial cost of EDs in Australia in 2012 was estimated at $17.18 billion.

The majority - $9.97 billion - of this cost is borne by individuals, mainly through lost earnings.

The Australian government is the second largest bearer of the financial costs, spending $4.89 billion.

Fed Up asks how then can we justify having just 25 beds nationwide - 15 in Victoria, five in Queensland, the remaining five in NSW. Western Australia, Tasmania, the Northern Territory and ACT have none.

Ms Powell has had repeated admissions to Wesley and RPA eating disorder units, multiple ER admissions to Shellharbour Private Hospital and one admission to Wollongong Hospital due to a lack of available beds anywhere else.

She is beyond desperate. She has almost given up.

The NSW government gave a glimmer of hope when it committed $1.6 million in its 2013-14 budget to enhance access to inpatient and community-based treatment and services for people with eating disorders.

"The NSW government understands just how cruel and distressing eating disorders can be, and the impact living with an eating disorder can have on a person's life," Mental Health Minister Kevin Humphries said.

The funds, he said, would increase access to inpatient and community-based treatment and services and "build the ability of our clinicians to treat those with eating disorders and support the ability of people with eating disorders in regional communities to get earlier and more effective treatment".

Full details will be revealed in the coming weeks, the minister's spokesman said. But a lot can happen in a few weeks for people with anorexia.

Ms Powell fears the government's efforts are a drop in the ocean.

"Will this get us everything we need to make a drastic improvement to this area of healthcare?" she asked. "I was, and am, still very lucky. I have parents that have helped fund my treatment in a private setting, that changed their health insurance to secure me a bed.

"We were lucky we could afford this, but there are many others out there where this is simply out of reach for them. They end up in the public hospital where they are stabilised medically and sent home only to end up back in the ER the very next day."

Ms Powell, even with support from those around her, is still low on hope.

"We come to today, after leaving hospital just under three months ago, and my BMI [body mass index] is back down to almost a critical level.

"I am once again being urged by my team here to return to a hospital in Sydney as they again can no longer provide the support I need, not just physically but mentally.

"The decline in my weight and health is not something that can be cared for in an outpatient setting. But I just can't bring myself to go back once again."

The gravity of the health system's deficiencies is overwhelming for someone like Ms Powell.

"We need GPs to be better educated in diagnosing eating disorders. We need more specialist psychologists, psychiatrists and dieticians trained in eating disorders.

"We need more units and beds. Most of all we need more funding."

Last year the federal government handed $1.9 million to the Butterfly Foundation for its support and information services for people with eating disorders.

And while Fed Up encourages early intervention and prevention, it wants immediate support for the "30 acutely ill patients on the waiting list and countless more still suffering in our community".

Ms Powell, Ms Graham and Ms McAlinden are three women desperate to hear what plans the state government has for their $1.6 million.

Their lives depend on it.

Eating disorders

• The Butterfly Foundation says eating disorders have the highest mortality rate of any psychiatric illness, by up to 20 per cent.

• The mortality rate for anorexia is between six and 12 times higher than the annual death rate from all causes in females aged 15 to 24.

• Roughly 10 per cent of individuals with anorexia will die within 10 years of the onset of the disorder.

• Little research has been done to show how Australia’s response compares to other countries. The Butterfly Foundation is currently doing research in that area.

• A  2012 report by the UK Royal College of Psychiatrists found there were 447 inpatient eating disorder beds (for children, adolescents and adults) in the UK, of which 221 were private and 226 public. The number of public beds equates to one bed per 279,565 people (or 3.58 beds per million population). By comparison, Australia has 25 public beds: one bed per 860,309 people (or 1.16 beds per million population).

• Anyone seeking help and support with eating disorders or body image issues, please call 1800 334 673 or email support@thebutterflyfoundation.org.au