This is the mental illness most likely to kill you.

by KATE LEAVER

I’m not a doctor; my only qualification is personal experience. When I was fifteen, I was diagnosed with anorexia. You may think it’s painful for me to recount my experience, but it’s not. It’s too important, and we have to talk about it.

There are things you need to know.

Anorexia is not a diet. It’s not a fad. It’s not a choice. It’s a mental illness, and it’s a gradual form of suicide. I used to wonder whether it was schizophrenia’s second-cousin-once-removed, because the voices in your head are so loud they drown out all common sense. The desire to self-destruct is all-consuming; the less you eat, the stronger that urge becomes. When a human being is starving and malnourished, they become fixated on food – which is a morbid unfairness for someone whose nemesis is food. At first the body fights to hold onto what fat it has, then it goes into survival mode. Organs begin to shut down, you’re always freezing cold, and you’re alone in your mission to take up the smallest space in the world you can.

The most important thing you can know about eating disorders, is that it’s not about weight loss. It’s not even strictly about the body. It’s about the mind.

When I was sick, I collapsed often. I lost my hearing for hours at a time, sometimes days. I blacked out on the stairs once, and hit my head. I didn’t have a period for a year. I was exhausted, brittle, cold, and so far past hunger I couldn’t remember what it felt like. But the worst symptoms were more insidious – I lied to my family and friends about whether I’d eaten, I tricked them into believing I was OK, I stole laxatives from the chemist, I isolated myself socially, and my own reflection in the mirror was my kryptonite.

The only way I recovered was to flip the strength and determination I used maintain my eating disorder against itself. Starvation takes enormous discipline, so you have to find a way to redirect that energy to recovery. It’s so difficult, and I cannot imagine doing it without the support of mental health professionals.

In NSW there are just two public hospital beds allocated for adults with eating disorders. Those two beds are located in the psychiatric ward at the Royal Prince Albert Hospital, and the public outpatient facility is open just four hours a week.

Ella Graham was told she would need to wait until next year for a bed because the other 10 or so people on the eating disorders program list were equally or more unwell than her. She said she was told “you’re not in heart failure yet, so we can’t admit you.”

This sounds woefully insensitive, but what is a hospital to do when they only have two beds to offer? Prioritizing the most extreme cases is the only way they know to operate. It’s absurd and unacceptable, that both psychiatric nurses and young women like Ella are in this position.

Do you realise how much strength, and how much bravery it takes to ask for help? And how devastating it is, that the public health system cannot provide support. Eating disorders require specialized, urgent care – but to make that a priority for politicians, we need to adjust the public perception of the illness.

Anorexia Nervosa has a death rate of approximately 20%. That’s ONE. IN. FIVE. Which makes it one of the deadliest mental illnesses. Armed with this fact alone, I’m bewildered by the lack of urgency in our public health system to care for sufferers.

I cannot fathom that just two men or women in NSW – just 15 in Victoria, 5 in Brisbane – are welcome in public hospitals. And even then, there is no specialized care. The unfairness of it makes me want to weep.

I was lucky – and I use that word uncomfortably – that I was able to receive in-patient care in a private facility. The unwavering, infinite support my darling mother gave me, with the help of a vigilant childhood GP and a string of psychologists helped me recover. Others are not so lucky.

The revered eating disorders specialist I visited reminded me of Jaba the Hutt (pardon the visual, pop-culture insults is one of my many coping mechanisms). She was menacing, tactless, hard-faced and mean. I can only assume it was a strategy to force patients into recovery just to spite her. She popped me on the scales without clothes and gruffly bundled me off to a private eating disorders clinic in Sydney, where I languished for 5 weeks. The head nurse in the eating disorders ward used to be a guard in a maximum security women’s prison – that’s the level of discipline it takes to tame an eating disorder.

When one of my dearest friends became anorexic in our final year of school, I realised all over again how often eating disorders strike strong, intelligent women. Eating disorders are so often mistaken for extreme vanity, and that’s what troubles me the most. Older members of my own family praised and dismissed me in turn for “being vain and looking after your waistline,” which is an archaic perspective from a generation still in fear of mental illness.

I suspect it’s the very reason we haven’t demanded more and more beds, an integrated continuum of care, residential treatment, and better funding. Until it’s broadly recognised as one of the deadliest mental illnesses, there isn’t sufficient urgency to address the failure of our public health system to deal with eating disorders. We need to change that, so men and women like Ella Graham can receive the care they need.

For support, help and further information please contact The Butterfly Foundation on 1800 ED HOPE (1800 33 4673) or visit their website at www.thebutterflyfoundation.org.au

You can also head over here to support the campaign to get the NSW Government to do more about eating disorders: www.fedupnswhealth.com

 Kate is a radio producer, writer and Goon Show enthusiast. You can find her website here, and follow her on Twitter at @Kateileaver.