Before I became unwell, I had a lot of assumptions about what happened to people who were unwell. I assumed that no unwell person would ever find themself having to explain their condition to doctors who had never heard of it before. I assumed that doctors could not refuse to treat someone who was unwell, or would not ask that unwell person to convince them – often over several weeks – why they should do so. I assumed that treatment cures illness, or at least does not do harm; that medicines are prescribed precisely and not by trial and error. But most of all, I assumed that when a person became unwell, their medical expenses would be taken care of. We have a public healthcare system, after all – and our politicians speak so often of fairness and the fair go – and it is never a sick person’s fault that they are unwell, and so it seemed ridiculous that they would be penalised for something already so punishing.
This is, essentially, just a gentler way of saying that I had the privilege to be incredibly naive. When I consider now all of the money I have spent across the seven years that I was in active treatment for my illness, seven years when media commentary about the irresponsibility and instant gratification of my generation has continually intensified I often think: if I could eat avocado toast, I’d be able to afford a house by now.
In many ways, I’ve been particularly unlucky – anorexia is a notoriously difficult illness to treat, especially in adults, and requires a barrage of therapists, practitioners and specialists. Eating disorders have the highest mortality rate of all mental illnesses; it’s estimated that recovery takes an average of seven years. In the early stages of treatment, it’s best to see a psychologist twice a week – because sitting down to eat six times a day when everything in your body and being screams against doing so is an incredibly difficult thing to do, and it’s almost impossible to stay on track without this kind of support every couple of days.
Before I asked my family to step in and help, I’d been living on less than $50 every week after rent and medical bills – not to mention the fact that part of my treatment involved trying to eat out occasionally, or buying coffee made on full-cream milk every day for a week.
I remember talking about this with one of my friends from hospital, who was also a student, and working part-time as a nurse, who’d sought financial aid from her university in the form of $20 Coles gift vouchers. We’d both found it difficult to ask for help – in no small part, I think, because anorexia is always underpinned by a fierce striving for needlessness, for independence – and my friend phrased the problem like this: I can afford to learn how to eat, but then I can’t afford to eat.
Every single first time I see a psychologist, a psychiatrist, a dietitian, I have to explain the unusual circumstances of my illnesses, the physical rumination – a mechanical tic in my stomach that responds to certain foods – that underpins the psychological anorexia. Each time they tell me they’ve never seen a case of rumination before – it’s rare that they’ve even heard of it. Each time this process takes the best part of an hour; each time we’re left with barely 10 minutes for the clinician to begin to give advice. Each time I spend almost the entire appointment educating them, usually armed with fact sheets or research papers or printed-out extracts from medical textbooks. That’s all we have time for today, they always say. I’ve had to pay – full-price – on the way in.
Medicare – for now – covers most GP appointments, although it’s becoming harder and harder to find a good GP with mental health nous who still bulk-bills. But for everything else, it’s terribly inadequate. A rebate for a psychiatrist appointment is $156.15, when the appointment itself costs about $350. In each year, one person is allocated up to 10 psychology rebates – eating disorder patients need about nine times this. I usually run out of rebates by the end of March.
Over my seven years of treatment, I’ve calculated – taking into account all of these rebates, but not including my health insurance premiums or the cost of my medications, both of which have changed too many times to keep track of – that I’ve spent more than $75,000 – which is the equivalent of 18,750 avocadoes, by the way. Or 10 full years of café breakfasts, every single day.
I don’t think of this as wasted money. I have learnt a lot and changed a lot, even if my illness is still with me, and probably will be for life. Had I not spent this money, I’d almost certainly have died. But these bills never should have been mine to pay.
In 2012, the Butterfly Foundation published a report on the economic impact of eating disorders in Australia. They found that eating disorders affected about 4% of our population (an estimated 913,986 people), and that taken together, these people paid $592.2m in health system and other costs related to their disease in just one year.
This is a staggering amount of money in any circumstance, but it becomes all the more incomprehensible when the other factors that make up the “burden of disease” are taken into account. Many people with mental illnesses work only part-time or casually, if they’re able to work at all; they have greater rates of absenteeism (because all of those appointments take up time) and presenteeism (which is when you show up for work but don’t actually do anything – like when I used to try and proofread with a brain so undernourished I could barely concentrate for five minutes at a time); there are also informal care costs and sick leave (itself unimaginable for those of us who are self-employed).
With these factors included, the Butterfly Foundation estimates the socioeconomic cost of eating disorders to be $69.7bn each year. 89% cent of this cost is borne by individuals, with governments – federal and state combined – covering barely more than 7%. The rest of the burden falls on families and friends, employers, and a nebulous category called “society/other”.
I once went to the pharmacy in September to fill my monthly scripts; the woman at the register wore bright green lipstick and had a row of similarly-colourful lipsticks on the counter in front of her. She scanned my medications, said that’s $83, and, in the same breath, would you like to buy a coloured lipstick to raise money for women’s mental health?
I stopped getting regular treatment for my illness partway through last year. I didn’t realise until I did this just how much the financial anxiety of meeting the costs of my treatment was contributing to the generalised anxiety that’s part and parcel of my illness; didn’t fully appreciate how stressful managing these constant payments had been until I was no longer checking my bank balance and making calculations almost every other day. The relief was almost physical.
This story, though, is not just mine. As well as that estimated 4% of the population with eating disorders, it’s estimated that 20 per cent people in this country will struggle with mental ill health at some stage in their lives; physical illnesses can and do also incur incredible expenses, and often trigger anxiety and depression in the people who live with them as well.
But here’s the thing: access to healthcare – to affordable, timely and quality healthcare – is a human right, and our country’s laws explicitly state that it is the government’s responsibility to “create conditions” which “assure to all medical service and medical attention.” I already had terrible trouble accessing services and treatment because of the complex nature and the rarity of my condition; and it seems even more obscene that economic access should have been an issue as well. The financial burden of treatment should never have been added to the physical and mental burden of my illness. The system itself is pathological and it is punishing, and within it, I certainly found, it is very difficult to become well.
• This is an edited version of the article If I Could Eat Avocado Toast, I’d be Able to Afford a House by Now that originally appeared in the literary magazine Kill Your Darlings