Written by Katarina Bryant as part of the FWF2020 ThinkIn, The Politics of Health.
Last week, I saw a tweet praising Australia’s healthcare system. The person who had posted the tweet had gone into hospital for appendicitis, and had come out with both their appendix removed and no bill charged. The thread was littered with similar stories admiring the system: babies delivered safely, gashes stitched up in emergency departments. And while the tweet did mention that this scenario would not be as clear-cut for folks with mental illness and/or reproductive health problems, I still felt a sense of unease.
It doesn’t feel good to be the exception in someone’s tweet thread, much less a popular one. I fit within both of these exceptions: I’ve been diagnosed with a complex mental illness — non-epileptic seizures — and am currently trying to get a diagnosis for what I suspect is endometriosis. Two-and-a-bit years after my seizure diagnosis, I am still on the waitlist for a public neurologist — I’ve been advised to purchase private health insurance and wait twelve months to be covered for excision surgery. Otherwise, I could spend at least two years on a public waitlist. But if I paid eight thousand dollars upfront, I can get surgery at a private hospital pretty much right away.
My experience is not an uncommon one; half of all of patients needing so-called ‘elective’ surgery wait over a month after being booked in. In 2018, South Australian Health Minister Stephen Wade said: ‘It’s not uncommon for a six or seven-year wait in some clinics.’ On top of this, the statistics often don’t show the months spent waiting for an initial specialist appointment.
So, I had to ask myself, ‘How long can I bear to be in pain?’ I wish my illnesses were ‘elective’. It goes without saying that I’d love to have the surgery now, but eight thousand dollars is beyond my means. More often than not, I consider the long-term tenability of losing a week out of every month, and try not to burn my skin (again) from the soothing heat of a wheat bag. Financial costs continue weighing against personal ones. I hear about a friend who recently had surgery; she had been placed on a waitlist years ago. Afterwards, she was diagnosed with adenomyosis but was told that she will have to wait another four months for a meeting with her surgeon. She does not know what they did to her body in surgery, or how bad her illness is. In what other industry would this be okay?
I have yet to have an appointment at a hospital or a specialist’s room where my jaw didn’t clench when I paid at the counter. Each appointment means a rearrangement of finances, cutting out the smallest of pleasures. It also means that every appointment has to achieve as many outcomes as possible (referrals, prescriptions, advice); it is not practical for me to come back easily. Yet I am lucky to be able to make the payments at all, even if they are often difficult. I am also privileged that, if push came to shove, my parents would take out a loan for my healthcare. But such decisions should not have to be made at all — no one should have to run a cost–benefit analysis against suffering. When someone praises the Australian healthcare system, I feel as if my experience is being disregarded as it is happening. And while our system is infinitely better than, say, the United States, many people are still being left behind — those like me whose illnesses mean years on waiting lists and appointments spent pleading with doctors to take us seriously.
I’ve heard mental illness classified as an ‘invisible’ illness. This is true, sometimes. I’ve begun to think I lead a double life where I move through the world either scrutinised or unnoticed. There are afternoons where I’m walking through Adelaide’s Central Market, my tote bags filled with eggplant, spinach, and apples burrowing lines into my shoulders, invisible in my baggy clothes and thick sneakers. This is the intersection of my privileges as a cis white woman with ‘invisible’ illness at work.
But there is a shift when I am unwell. There are other afternoons where I’ve had to crouch in a gutter near the entrance of the market and fold in on myself, palms pressed to my eyes trying to block out the headlights that provoke a seizure.
At my most unwell, my hands twitch, wrists flick. I end up muttering to myself. Alone, walking up the street, I often don’t notice until I catch people staring. This shift from invisible to hyper-visible is stark, like the onset of a seizure. I live with the knowledge that living in my body in public space remains precarious.
There’s a memory I keep returning to from the period when I was being tested and then diagnosed. I had called a specialist’s office, but the receptionist refused to tell me anything about wait times until I had a referral addressed to them specifically. I then tried to explain that my GP had asked me to ring around and find the shortest possible wait time in the first place. The dismissal of this urgency brought me to tears. With shuddering cries, I gave up and explained to Mum what had happened. She called them with what she calls her ‘middle class voice.’ Mum was the first in our family to go to university, where she learnt to speak in this way — ‘formal’ and ‘reserved’, she calls it — when she needs someone to listen. So Mum called, learned the wait times, and booked me an appointment in a fortnight, all without a referral. Later, she recalled the conversation, rage in her voice: ‘It’s fucked.’
When someone praises the Australian healthcare system, I feel as if my experience is being disregarded as it is happening. And while our system is infinitely better than, say, the United States, many people are still being left behind — those like me whose illnesses mean years on waiting lists and appointments spent pleading with doctors to take us seriously.
There are so many hurdles to getting adequate care and I think many of them are unspoken. To sound middle class urges people to listen. To be ill in one way, like needing an appendix removed, is much more preferable to having a mental illness (almost a third of patients with acute mental illness will spend more than eight hours waiting for help in an emergency room).
I’ve learned that having a complex mental illness — an illness so rare that even your psychologist hadn’t heard of it before meeting you – greatly impacts quality of care. I cannot personally speak to the additional challenges of being a First Nations person or a person of colour living with chronic illness and/or disability in Australia, but they are profound (just look here and here).
Mine and many others’ experiences have proven that to be a woman, non-binary or gender-diverse person is to often be seen as untrustworthy by the medical system. Even if (and often when) my healthcare providers are not men, I am still treated as if I cannot know my own body. Worse, still, is being treated as if I cannot be trusted to make informed decisions about my treatment.
This shift from invisible to hyper-visible is stark, like the onset of a seizure. I live with the knowledge that living in my body in public space remains precarious.
In 2016, I was prescribed anti-depressants and the dosage was raised, raised, raised until it could not be raised any more (heart murmur). I was on them for a year or two before my GP mentioned I should get off them. Wean myself. She didn’t mention why specifically, just that ‘it isn’t good to be on them for too long’. She mentioned reducing my dose for the third or fourth time as I was renewing a mental health care plan. I wanted to say that I was barely afloat. I wanted to tell her: drop it. But I needed to refill the prescription. After this, I told myself, I would not need to return for three months. All I had to do was just get through. Grin and bear it.
Another memory: I’m standing in my GP’s waiting room. There was a flickering fluorescent light so I stood in the hallway, afraid a seizure would come where I would need to be rushed home, which would result in me missing my appointment. There were no seats in the hallway, so I leaned against the wall to hold myself upright. When the GP came to collect me, thirty minutes late, he looked at me as though I was not quite a person — as if I was strange and disgusting and had no right to be there. Despite how I had blended concealer under my eyes, wore neat black trousers, booked an appointment not too close to either side of lunch or the end of the day, he still did not see me as a person deserving of care. By standing in the ‘wrong’ place to wait, I knew then that the quality of my care would suffer, despite the fact that I had brought my partner along as a backup to validate my experiences. No matter how much time I spent priming the conditions of this appointment in my favour, I knew I could not change the outcome in that moment. I would not be heard in the way I needed. And I would still owe a gap of $70 for the privilege.
Mine and many others’ experiences have proven that to be a woman, non-binary or gender-diverse person is to often be seen as untrustworthy by the medical system. Even if (and often when) my healthcare providers are not men, I am still treated as if I cannot know my own body.
The catch-22 of being an ill woman is that self-advocacy is integral to receiving treatment, but often I am too unwell, too scared, too broke to push for better. I’m uncertain if I know how to put this kind of tiredness into words. In a doctor’s room, all intersections of power and privilege are amplified. But the irony is that you cannot argue past powerlessness; you have to learn to communicate in other ways. Smile. Dress well. Act as though you are not unwell. All in the hope of being treated with care. It’s exhausting and, increasingly, I find myself too tired to perform.
Katerina Bryant is a writer based in South Australia. Her first book, Hysteria: A Memoir of Illness, Strength and Women’s Stories Throughout History, was released in September 2020.