Jade was a healthy kid who enjoyed swimming and horse riding in her rural NSW town. She was popular and did well in school however she’d secretly struggled with depression and anxiety since she was only ten years old.
Then, Jade became fussy about what she ate, and one day she announced she wanted to be a vegetarian. Soon after she began to restrict different foods and so began a devastating cycle whose fingers she is only just prising away from her after eight long years.
“The problem with an eating disorder is it lives with secrecy. For many, many years we were clueless,” says Simone Hoye, Jade’s mother. Jade finally sought help for her depression at 17 but by the time youth mental health foundation, Headspace, called in Jade’s parents her eating disorder was ruling her life.
“Headspace were fantastic, but the whole thing with eating disorders is they are so complex. There is not one reason why someone has an eating disorder so it makes treating it hard,” tells Simone.
Jade went to her GP who sent her immediately to hospital. Jade was 38kgs at 5”5’ and her BMI was terribly low.
“The hospital was great, they do what they can, but they’re not equipped for these situations,” says Simone. “Before they can actually keep an adult with anorexia in hospital their BMI has to be 12 or 13. Now, that’s basically nearly dead. Jade’s BMI was 14 and that was horrendous.”
Jade was admitted, she complied with hospital feeding, and told the psychologists what they wanted to hear and was discharged shortly after. Hospitals heal sick bodies, once a person with an eating disorder is deemed stable they are released unless they are close to death. Often, this is too late.
“That part of the health care system is wrong. There has to be a way to look at each person and make a decision,” says Simone.
Eating disorders affect every aspect of a person’s life. Often they cannot work, their parents and partners need to quit work to keep an eye on their loved one and entire family’s lives are impacted by the disease.
“I reduced my hours at work so I could be home for meals. After meals I would follow her to the bathroom and keep her talking to ensure that she wasn’t vomiting or using laxatives. You have to constantly watch your adult child.”
Jade is currently undergoing her second visit in rehab in a clinic hours away from her family. This time she is feeling stronger and more positive than ever. In fact, she recently had the courage to speak openly of her challenges to her Facebook community after eight years of secrecy.
Although eating disorders have the highest mortality rate of any mental illness, and sufferers are six times more likely to attempt suicide, most GPs are not trained in eating disorders and many psychologists don’t know how best to address.
People in cities have better access to resources and help but people living in country or rural Australia are left struggling to hold the pieces together.
“Hotlines like the Butterfly Foundation are your first point of call,” tells Simone, who underwent the online carers course through the foundation to learn how to best care for Jade.
“In regional areas there is nothing. Our closest in-patient setting is either Melbourne or Sydney which is four and a half hours each way.”
Annette Baker recalls the hours spent travelling to treatment for her daughter, Mary’s, eating disorder as excruciatingly painful times.
“When we were discharged from hospital in Melbourne we were not allowed to go home without a post care plan in place,” she tells. Annette and Mary lived in Albury, and the trip took the best part of a whole day every week.
“We came to Melbourne every Tuesday for a year, there and back in a day, to visit Oak House,” says Annette. “It was agony. Her two big brothers and I would go and it was like the elephant in the car.”
The treatment that Mary received didn’t work for her and one day in 2011 she walked to a local bridge and took her own life.
“The post-suicide care has been probably as bad, if not worse, as Mary’s inadequate care,” tells Annette. “We couldn’t find suitable treatment near our home before her death nor help for us after.”
We presume anyone diagnosed with an eating disorder can receive the required treatment however 85% of people diagnosed struggle to receive appropriate care.
Only 27% of sufferers receive adequate treatment.
An estimated one million Australians live with an eating disorder be it anorexia nervosa, bulimia nervosa, binge eating disorder or any other atypical presentations of these and in all cases early intervention is the key.
CEO of The Butterfly Foundation, Christine Morgan, believes that adequate training for all medical professionals is the only to ensure people get the help required in those vital early stages.
“If somebody is admitted into hospital for an eating disorder they are already very sick,” says Christine.
“Really what Australia needs systemically is a very integrated multidisciplinary approach which looks at what can we do as early in the illness as possible. So how can we get a whole heap better at training our GPs and frontline health professionals to identify when there is an eating disorder and diagnose it?
“Then how can we better structure our referral path way to keep somebody out of hospital and one of the key challenges we have is to ensure that there are Medicare funded services that give appropriate doses of treatment.”
Treatment for an eating disorder is as complex as the disorder itself. Psychology, psychiatry, general health care, paediatricians and dieticians all form the multidisciplinary team required to help these one million people.
If you are lucky enough to have access to the health care required, whether you can afford it is a whole different ball game.
“Under current Medicare models of care if you live with chronic pain you may get a few sessions with a practitioner. If you qualify for a mental health plan you might get 10 sessions with a psychologist but we know that for eating disorders you must have very regular contact with a dietician, it’s an illness about eating so you must have a dietician on board, and you need regular psychological help for at least three months, or even more than that,” she says.
An estimated 15% of women experience an eating disorder at some stage, and there is also a rise in the prevalence in boys and men. Eating disorders are on the rise in the older and younger generations, and it is the third highest chronic illness in young women.
Until there is adequate, integrative care in place those saddening statistics are unlikely to get any lower.
***If you need help or information contact the Butterfly Foundation – 1800 ED HOPE (1800 33 4673) or thebutterflyfoundation.org.au
