Tag Archives: EDNOS

Eating disorders & the treatment battle

The last week, there has been a lot of talk surrounding eating disorders and treatment in the blogs that I follow. Last week, when I took my letter to register with disability services at university for the year, my advisor read through the listed diagnoses. “Depression, insomnia, OCD, PTSD, EDNOS – how long have you had an eating disorder for?”. It’s a difficult question. Immediately I spit out “oh, I don’t have an eating disorder anymore. It must just still be listed on my file”. I don’t think of myself as having an eating disorder – god no. But taking a step back – thinking about my behaviours in terms of symptoms on a diagnostic check list… I suppose I do fill the criterion. It’s just so much easier to not think about.

Eating disorders are insidious. Despite having been weight restored for almost four years, I still sometimes feel the tantalising pull of my eating disorder. It’s not something that I feel is important – at least not at this point in time – there are bigger struggles to be fought.

It does scare me, however, how ingrained into my life this has become. There’s nothing strange or shocking to me about self induced vomiting, ingesting poisons to aid purging, going days without eating. My electrolytes are regularly tested as abnormal, my heart skips and starts and I shrug it off as nothing. Over the years I’ve watched perhaps fifteen – twenty friends that I’ve made, in and out of hospital, die to these diseases. The first few were devastating – and the lives lost are still tragic, of course, but it doesn’t terrify me to hear that another one of us has fallen, like it once did (like it should).

One in five is a huge mortality rate for any illness – and is shocking for a preventable, mental illness. The Butterfly Foundation also reports that those with anorexia nervosa are 32x more likely to suicide than their healthy counterparts. It’s a terrifying thought. With such devastating morbidity (almost one in four young women) and mortality rates, one would think that there would be effective national and international preventative campaigns, early intervention treatment, and widespread intensive specialised treatment for severe eating disorders.

But there’s not. I’m lucky enough to have private health insurance and access to eating disorder units in private hospitals – but not everyone is. I know without a doubt that without the hospitalisations and interventions I was exposed to from ages 13-19, I would be dead. Many times I showed up at the door of the emergency department of my local hospital, chest pains, aching head and shaking like a leaf – and they would give me a few hours on fluids and potassium, then discharge me. Without ongoing care in the private sector – I don’t doubt for a second that I would have been one of those girls who dies suddenly – her heart stopping in her sleep.

Recently, one of my friends was admitted to a public hospital over a weekend and discharged on Monday on the grounds of not being sick enough – despite plummeting blood sugar and fainting on her way out of the unit. You can read more about her story here – but what I really want to share with you is the petition that she has created regarding eating disorder services in our state. Despite the growing prevalence of eating disorders, we have two acute inpatient beds dedicated to eating disorders, statewide. It’s simply not good enough. To get one of these beds – which are usually reserved for severe anorexia (despite it not being the only eating disorder – which is a thought for a whole other post) – being on your death bed is practically a requirement. Lives are being lost because there isn’t enough available treatment, and they don’t need to be. Please sign, and share, and talk about this.

I remember being told in one of my first hospitalisations for anorexia nervosa that out of each five people with the illness – one would die, one would recover, and three would live with an eating disorder – in whatever shape or form, for the rest of their lives. To be entirely honest I don’t see the eating disorder voice ever leaving my head – it planted itself early and it has dictated so much of my self development. I have learnt to live with it, though – I can eat relatively well and maintain my weight , coax food into my mouth despite my head’s protests against me. Yes, I know people who have fully recovered. But they are definitely the minority. But it’s a terrifying thought that I know of more people who have died as a result of their eating disorder than I do people who have fully recovered, and maintained that recovery.

It scares me that even this level of ‘recovery’ is not available to everyone. It’s taken years of intensive therapy and many hospitalisations to get me to this level of medical and psychological stability. It shouldn’t be a challenge to reach a vague semblance of recovery. Eating disorders are incredibly difficult and exhausting to fight – and those suffering shouldn’t have to fight not only for their body and their lives, but their treatment as well. An eating disorder is already living a war inside one’s head. It’s not fair, and it’s not okay. While I am absolutely aware of how lucky I am to live the life that I do in the world that I do, it scares me to think that in terms of treatment – despite how inconsistent, often useless and varied mine has been – I am one of the lucky ones.

Tagged , , , , , , ,