We don't understand this about eating disorders, but we should
Raia stood out as soon as she came to Ravenswood in year 9. She was reserved, sweet, and very small for her age. But she stood out to me because, just as we can pick kindred spirits, so too can we often pick those whose demons reflect our own.
Having only just returned to school after two years away battling my own eating disorder, the mirror was too confronting and although we were friendly, I kept my distance.
I did notice though when she stopped coming to school – back in hospital, I figured – and missed so much she ended up repeating. On we all went, battling through in separate years, in our separate orbits of struggle. I hoped she would make it – I hoped we both would.
A little over 10 years ago, an old school friend told me Raia had died – her illness had led her to suicide. She was 25.
Anorexia nervosa has the highest rate of death of any mental illness. Rates of suicide among those with an eating disorder – anorexia nervosa, bulimia nervosa, binge eating disorder – are up to 31 times higher than the general population.
"Many people think that it is about the physical behaviours without understanding that this is a really serious mental illness and the levels of distress that people can feel caught in an eating disorder is extraordinary," says Christine Morgan, CEO of the Butterfly Foundation.
Morgan adds that there are many other misconceptions about eating disorders, including that someone is being difficult, simply wants to lose weight and should just "choose" to eat.
Raia was small for her age as the eating disorder stunted her growth.
She adds: "I think that there is a lot of stigma that goes with the binge eating component of binge eating disorder and bulimia nervosa. I think that there's a sense that that's just people indulging in eating and they don't understand that people with those illnesses will be binging in a way that causes such psychological distress and they're eating foods they wouldn't normally eat – it's not comfort eating. I think there's a lot of focus unfortunately on the eating and exercise behaviours which are but the outcome of what is happening in the head. There's more focus on those behaviours than there is on the underpinning psychological issues that need to be dealt with."
When Raia's family initially sought help, they experienced what many others dealing with an eating disorder or a loved one's eating disorder have also experienced: misplaced focus and a complete lack of understanding.
"It was almost back to the days of asylums where, if you didn't put on weight you were confined to your bed in a room with white walls," says Raia's sister, Este Darin-Cooper, of the "specialist" care facility she was admitted to. "If you put on a kilo you might get a book for a day or you might get off bed rest and get to walk around for an hour or two. The focus really was just on putting on weight."
Although Este, just a year younger than her sister, admits that for those with anorexia nervosa weight gain can be a matter of survival, it is "really only a symptom of the illness not the underlying cause".
"They put on the weight and then they're considered ready to go forth and enter the world again," Este says. "It's very easy to put on weight – you can force feed someone or, if they're in a hospital environment, they can put on the weight. They go out, lose it and go back to hospital and it becomes this cycle in and out of hospital. If they haven't learned to function in the world as a teenager or young adult because they haven't had that social development or emotional support then it's much easier to escape back into the safety of the hospital. It's not really setting up one to live long-term."
Although Raia put on weight, returned to school and, following an astounding result in her HSC (despite all the school she missed Raia received a final score of 96.9), then to university where she would study nursing, she was still facing an intense daily battle with the illness.
"The illness isn't cured by putting on weight," Este says. "The illness is there because of a mental heath condition. It's often not visible. The weight is only a symptom of the illness, not the illness itself."
Este and her family decided to speak for the first time about Raia after becoming involved with the Butterfly Foundation and hearing the stories of others.
"The difficulties we faced in treatment were from when she got sick in 1992 up until when she died in 2005, but to listen to some of the other families that the Butterfly Foundation interviewed whose experience was much more recent - not much had changed," Este says.
Morgan adds that understanding of the disorder is evolving, slowly.
"We know that it's an epigenetic disease of genetically vulnerable people being triggered by environmental stressors and trying to lose weight – there's always a weight component in there or an eating component in there," Morgan explains. "But we've still got such a long way to go. It's estimated that less than 23 per cent of people with an eating disorder today will be in treatment."
Tragically, by the time Raia, who Este describes as "very caring and empathetic", took her life, her family was expecting it.
"The health system had failed early on so that was what we were faced with at the end," says Este, who emphasises that they do not place the blame on any one doctor, but the system as a whole. "It should never be too late, but it made it so much more difficult at that later stage because she hadn't had that holistic treatment at the beginning. It was a little bit of a waiting game.
Although Raia's case is more common than it ought be, Morgan insists – as I also know – that it's possible for the story to end differently; it's possible to find a way out.
"There is always hope for somebody with an eating disorder and I hold on to the fact that there is always hope for us improving what is happening here – that everyone with an eating disorder or at risk of an eating disorder has access to the treatment when they need it."
WHERE TO GET HELP:
The Mental Health Foundation's free Resource and Information Service (09 623 4812) will refer callers to some of the helplines below:
* Lifeline (open 24/7) – 0800 543 354
* Depression Helpline (open 24/7) – 0800 111 757
* Healthline (open 24/7) – 0800 611 116
* Samaritans (open 24/7) – 0800 726 666
* Suicide Crisis Helpline (open 24/7) – 0508 828 865 (0508 TAUTOKO). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.
* Kidsline (open 24/7) – 0800 543 754. This service is for children aged 5 to 18. Those who ring between 4pm and 9pm on weekdays will speak to a Kidsline buddy. These are specially trained teenage telephone counsellors.
* Your local Rural Support Trust – 0800 787 254 (0800 RURAL HELP)