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.

Past, present & future

16 Years ago I: Was 5. In kindergarten at my local primary school. I was in a composite K/1 class and I remember making pancakes and writing down the recipe – it’s still pasted in my mum’s recipe book. I went to my friend’s house after school everyday because my parents worked. We spent a lot of afternoons taking their dog for walks down the fire trails to the river and painting empty coffee jars with glass paints.

10 Years ago I: Was 11. I’d changed schools into an accelerated stream at a school about half an hour from home. I travelled to school each day via train, bus and walking, which took me about an hour each way. I had gymnastics training four days a week and was playing netball, sailing and continuing to learn the flute & piano. Each day for lunch I packed four vita weats with vegemite, and I remember one day one of the teachers wouldn’t let me play soccer at lunch because they said I hadn’t eaten enough. I was self harming daily – usually with broken glass that I would collect on my walks home from school. Often I would pretend to be sick in order to stay home alone and smash beer bottles from the recycling bin. I got in trouble for refusing to take my jumper off during hot days at school. My older brother was getting heavily involved in drugs, which all came out towards the end of the year.

5 Years ago I: Was 16. I spent the year mostly in hospitals, both public and private on general psych, mood & eating disorder units. My birthday, christmas and new years were all spent on an eating disorder unit with a tube up my nose. I started seeing a private psychologist after having discharged myself from the child & adolescent area health service, but refused to speak about what was going on for me. I hadn’t yet admitted to myself that I had an eating disorder – despite the hospitalisations and clearly failing health. Twice I overdosed, waking up in hospital and pronouncing that I was fine. Thankfully, they didn’t believe me.

1 Year ago I: Was 20. Had to quit my job as a nanny for two amazing, amazing children. I should have died several times, but thanks to my treatment team, my friends and some helpful strangers, I didn’t. I spent a long time under a legally ordered treatment plan, locked in a public psych ward, having 3x weekly ECT. I also spent time in a private hospital’s ICU – where I found that the thing I missed most was fresh air. I somehow continued to take a full time load at university studying by distance. I don’t have many memories and my journals don’t make much sense, but I know that on December 2nd I was discharged from hospital on the first effective medication regime in seven years, which (along with more work than I ever thought possible) has changed my life infinitely for the better.

Yesterday I: I woke up, healthy, with the knowledge that the world hasn’t beaten me. I attended the final day of the 8th Australian & New Zealand Adolescent Health Conference, and it was incredible. I left feeling capable, inspired, and motivated that I can make a difference. I came home and did some study for my biopsychology exam next Friday. I went to the doctor, then dropped by a friend’s place to drink tea and watch a movie. By the time I got home I was exhausted, but feeling as though I’m finally in the right place, headed down the right road.

Today I: Slept in and had breakfast on the back porch with my kitten. I spent a couple of hours studying biopsychology and going over my statistics notes for exams, then had an afternoon nap. I’m now watching Community (hilarious!) with my sister. I should probably be studying, but I’m still somewhat exhausted post-conference.

Tomorrow I: Will continue to study for biopsychology and statistics. I will be grateful that I’m alive, that I have wonderful people around me and that I am entirely capable of doing and being absolutely anything. I’m sure I will learn something new, and find some beauty where I haven’t seen it before. I will be ready for whatever comes.

Memories & musings

Disclaimer: this post is a bit all over the place, my brain seems to have reached its limit from studying. Apologies.

Today I saw my doctor at one of the hospitals I’ve spent a lot of time at over the last six years. I hate going back there – seeing patients I know, smiles from nurses who have watched me grow up, tiny stairwells and intermittent duress alarms going off… but for me I think the worst reminder is the smell – the stifled, musty air that you become enveloped in when you’re living in a place with no opening windows and round the clock air conditioning. It’s so easy to forget that there is a whole world outside.

I saw my doctor today to get my scripts for overseas sorted and to have him write me a letter for customs. We covered the basics: sleep, mood, anxiety, university, friends – and then he leaned back in his chair with his hands folded beside his head, and smiled. “It’s so good to see you doing well. This has been an amazing year for you”. While I already know it myself, it’s always nice when someone else acknowledges how far I’ve come.

He has asked me whether I would be interested in talking to some of the eating disorder inpatients about my experiences. I haven’t yet given him a definite response. It’s been just over three years since I was last discharged from the eating disorder unit, and I’m not sure that it’s a place I ever want to set foot in again.

My first admission to this eating disorder unit I was fifteen, weighing the same as I had at age eight. The next three and a half years saw me getting slightly better, slightly worse, slightly better, a lot worse. Screaming matches with staff, learning how to remove and re-insert my own nasogastric tube, running on the spot for hours on end, hiding ipecac in the ceiling tiles. I’m not even sure how things got to where they are now. Little by little, life without an eating disorder became more bearable, and I learnt to trust myself. While I can’t be sure that I’ll never need another admission to the acute or mood disorders unit, I know wholeheartedly that I will never let myself end up on unit four again.

I no longer feel jealous when I see the skeletal girls sitting in the smoking area, talking about their meal plans, who is on medical bedrest and who is in wheelchairs. Eating disorders used to be so alluring – the pull can be unbearably strong… But finally, I no longer feel it. I’ve been there, and I’ve come back. I’ve seen that there is more to life than numbers and obsessions.

It’s a strange experience for me, to not be one of the patients. More often than not I’ve entered or left this hospital via the back doors, reserved for ambulances and police. Being admitted, sedated, transported via ambulance from a public hospital, or leaving, completely out of my head in police custody after my doctor has written up a legal schedule. Today I walked out the front doors, into the sun, got in my car, and drove away.