Editor’s note: This piece contains discussion of the symptoms and treatment of eating disorders.
When I won a literary prize a few years ago, my very-excited friends all asked me: what are you going to spend it on? Oh, I replied each time, just rent and therapy. I said it flippantly, and we’d all had a good little chuckle, but I wasn’t lying – I spent every cent of that prize money on doctors’ bills and rent.
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 naïve. I was barely 19 years old, and had hardly even been inside a hospital before, aside from the occasional visit to meet an older cousin’s new baby, or a grandparent in for a short stay. And aside from the few days after I was born, the only time I’d been a patient myself was when I had my wisdom teeth removed in a day surgery (my strongest memory of which is waking up from anaesthesia unable at first to see, and the nurse responding to my panic by saying, don’t worry love, you don’t want to be looking at me).
But 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.
It is never a sick person’s fault that they are unwell…it seemed ridiculous that they would be penalised for something already so punishing.
I once spent $400 on a psychiatrist to have her tell me to take Vitamin B12, as if this were the biggest problem with my restricted diet. I once spent $450 on another psychiatrist who was vetting me for a hospital program, only to have him realise in the last ten minutes of the appointment that when I’d been talking about rumination I’d meant the name of my physical disease – the tic-like spasming of my stomach that makes me throw up without volition – and not, as he’d assumed, the mental condition of circular thinking. Oh no, he said, once he realised his mistake, we won’t be able to accommodate you here. I had paid on the way in.
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 above and beyond those that suffice for many other mental illnesses. It’s amazing, for example, how much difference finding a specialist GP made to me – not only because she knew which tests to run which treatment options might be available, but also because she never said anything stupid, like, you don’t look that unwell, or, you’re naturally slender anyway, or, have you tried just eating more? There are also field-specific dietitians, who help prepare meal plans and slowly increase the amounts and the repertoire; the more occasional orthopedists, who deal with impaired bone density and stress fractures; endocrinologists for hormone imbalances and mineral deficiencies; and cardiologists – because the acutely malnourished heart can suddenly give way.
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.
In other ways, though, I am lucky. One of the less obvious characteristics of anorexia is a frugality with money – it’s not that dissimilar an impulse to being frugal and exacting with food – and so I’ve almost always had some savings I could draw upon. In the year that things were hardest for me, when I was required to see my psychologist twice weekly while on a PhD scholarship that I wasn’t yet able to supplement with teaching, my parents were able to help me out.
Anorexia is a notoriously difficult illness to treat, and requires a barrage of therapists, practitioners and specialists.
I know how fortunate I am to have that kind of safety net – and I know that many others don’t – but before I asked my family to step in, 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 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 ten 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.
I remember my PhD supervisor saying that I shouldn’t teach in the last semester of my candidature, so I could really focus on getting my thesis completed in time. I have to work, I said; and he replied, the thesis is stressful enough already, teaching is not a good idea. He was right; but so was I.
Medicare – for now at least – 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 around $350. In each year, one person is allocated up to ten psychology rebates of $124.50 each, when most people need at least double this – and eating disorder patients around nine times this – and even those sessions covered by rebate have always left me with an out-of-pocket gap of anywhere from $30 to $80.
My friend phrased the problem like this: I can afford to learn how to eat, but then I can’t afford to eat.
Each year, five appointments with a dietitian are covered, at about two-thirds of the rate usually charged – and I saw mine fortnightly, leaving 20 appointments entirely unsubsidised. I have private health insurance – because it’s absolutely necessary to access psychiatric hospitals and their day programs, and because the waiting list for public eating disorder beds is almost a full year long – but cover it provides is also pitiful: 13 rebates of $30 each for psychology, ten rebates of the same for dietetics. I usually run out of rebates entirely by the end of March.
All of this is to say that 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 over $75,000. $75,000 is the equivalent of 18,750 avocadoes, by the way. Or ten 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 into the economic impact of eating disorders in Australia, partnering with the economics firm Deloitte to properly crunch the numbers. They found that eating disorders affect around 4 per cent of our population (an estimated 913,986 people), and that taken together, these people paid $592.2 million 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 $69.7 billion each year. 89 per cent of this cost is borne by individuals, with governments – federal and state combined – covering barely more than 7 per cent. The rest of the burden falls on families and friends, employers, and a nebulous category called ‘society/other’.
The socioeconomic cost of eating disorders [is estimated] to be $69.7 billion each year… 89 per cent of this cost is borne by individuals.
The purpose of this report, of course, was political – to advocate for better services, better research, better funding, by speaking about economics, the best language that government understands. And while there have been some improvements to acute care in the public system – a few more beds, a shiny new building – since the years when I needed it so badly, there have only been cuts to these broader systems of subsidies and support. The NDIS, which could presumably attend to some of this need, is notoriously difficult for people with mental illness to access – only 6.4 per cent of its participants have sought it out for mental illness, even though mental illnesses are the second-most prevalent chronic diseases in this country.
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?
A few years ago I visited a government senator in her huge-windowed office in a skyscraper overlooking Circular Quay, alongside five other women, all of whom had struggled, or were still struggling, with disordered eating as adults, and all of whom had had enormous difficulty accessing appropriate treatment. It was part of some advocacy work we were doing together, and the senator had expressed an interest in taking our information to parliament. She listened to our stories and ideas and then told us, flatly, that she was only interested in hearing about prevention, because prevention strategies are always money better spent. That may well be, we said, but it doesn’t help people like us, and then we shook hands and caught the glass lift back down to the lobby, where we all promptly burst into tears – it is awful for anyone, but especially for an anorexic, to feel this overlooked, ignored.
Butterfly is currently collecting new data from adults who have received treatment for an eating disorder and their carers, attempting to measure these kinds of direct costs, and the impact this has on their lives. We are here, I hope it finds, and we are angry.
In hospital, once, an attending doctor sent me for a complicated ultrasound, to measure the velocity of blood flow around my stomach, even though I had explained to her that the tic in my stomach was mechanical, and has nothing to do with the structures in or around that organ. She said the test was considered part of my ‘treatment protocol’, that to refuse it would be considered resisting treatment. I had no choice; the test found no abnormalities, and when I was discharged I was sent a $300 bill for the procedure.
I stopped getting regular treatment for my illness partway through last year. I always imagined that when I did this, it would be because I was unequivocally better – able to eat sandwiches and spaghetti and sushi – not to mention cafe breakfasts – able to relax at picnics and parties and celebratory dinners, able to break the proverbial bread. But it wasn’t like this at all. Partly it because I was exhausted; I’d tried every available kind of therapy to no avail, and a slew of my professionals – my GP, my psychologist, my dietitian – all retired or otherwise stopped working within a few months of each other. More importantly, though, it was because I was finally able to consider my condition as chronic and incurable, even if a part of me still felt like this was giving up.
I didn’t realise 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.
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 per cent 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.