This week, Mona’s exploration of women’s experiences with chronic illness continues as Editor in Chief Lauren reviews Unseen. This memoir about Jacinta Parsons’ life with Crohn’s disease, her body’s betrayal and her wild ride to a place of acceptance is all too familiar for the thousands of women and gender diverse individuals living with the illness across Australia.
The first thought I had upon finishing Unseen was not one I’m proud of. At Mona, we are the women who are all about championing women to tell their own stories, but I found myself stunned that Jacinta could share something so… personal. We have created such a line between the private and the public, and our bodies are one of the key ways we police that divide. The fact that Jacinta dragged the personal out into the spotlight was, well… uncomfortable.
What I realised, though, was that while I was uncomfortable (my baggage, clearly), Jacinta was actually brave. There could be nothing more destabilising than losing control of your body and its functions, with no cure, no hope and no end in sight. And to share this? To fight against the Aussie narratives of stoicism and ‘getting on with it’? To tell people the intimate details of what this illness actually means, ileostomy bag and all? There’s nothing more terrifying.
She gives us a window through which to see parts of ourselves and our own lives, those of us who are ‘well’. It’s worrying that she has such a clear picture of when her supposed value as a human being was determined by her inability to be ‘productive’, to participate in the machinations of work, earning, investing, spending. Initially, she feels guilty, as we all do when we feel we are burdening others, and busies herself trying to ‘get better’ to be deserving of sympathy.
At the same time, she is a recipient of social welfare payments and all the shame and accusations that come with that; she exists in poverty because of this disabling illness, and, in fact, she shows that, at the poverty line, there are no choices. You can work in pain to avoid the criticism our society seems eager to heap upon anyone receiving the DSP, but then you’re viewed with suspicion: you can’t really be sick if you can work. This double bind is an especially interesting insight because, even though Jacinta penned her book in 2020, we can see the ‘current’ cost of living crisis in 2023 has been ‘current’ for those living below the poverty line for an age.
There’s theme in our experiences of illness and sickness that Jacinta references several times, and that is who determines what constitutes illness. She tells us that our system is still in the throws of the legacy of female hysteria (which I would argue doesn’t just include misdiagnosing females, but also extends to anyone from any minority group), and that the authority over our symptoms still rests squarely in the hands of doctors.
We aren’t able to speak of our experiences without the standard lines of questioning – are you anxious? stressed? are you exercising? do some relaxation.
It’s no coincidence that the overwhelming majority of specialist doctors required to diagnose and treat these conditions are men (66% according to the Australian Medical Association), and that those suffering from these chronic and disabling conditions often take years of traipsing between these doctors to gain a diagnosis and start treatment. The same issue arises again and again in the first-person accounts that Jacinta shares – why is our default position one of mistrust in people’s own knowledge of their bodies?
To do so would obviously require us to recognise that the current frameworks we have for understanding illness, its causes and impacts, are inadequate. We are reluctant to string symptoms together, preferring instead to treat episodes of sickness rather than enduring illness (a differentiation that I hadn’t even thought of until now), or we search for an isolated environmental cause (it’s the weather, it’s this job). In reality, we see from Unseen that illness is so much more socially constructed than this (much like the model of disability), if you’re unable to keep pace with the arbitrarily determined demands of our world, there’s a deficit in you.
Unlike much of the inspiration porn we consume (think Stella Young’s ‘I’m not your inspiration, thank you very much’), in which the message is one of overcoming adversity with an imperative to share a story that inspires and gives the majority of us pause to appreciate the things we take for granted and hug our loved ones closer at night, Unseen doesn’t make us feel appreciative or trigger guilt in us. The message isn’t wrapped up with a trite little bow because what Jacinta and all of those people she interviews tell us is that this is something they will live with forever. There’s no resolution, there’s no overcoming. It’s unpredictable, and at times it will allow them some air. At times, they aren’t strong or wise; at times, their symptoms are beyond the comprehension of our systems of medical knowledge, and even beyond the language we have to explain them; at times, they are caught between the worlds of illness and wellness and can’t explain how they aren’t constantly exhibiting the signs we all like to see to verify sickness.
You can buy Jacinta Parsons’ Unseen — the secret world of chronic illness at Booktopia. Stay tuned in the coming weeks as Lauren speaks with Jacinta on the Mona blog about her book and her personal experience of living with a chronic illness.
Jacinta Parsons is a broadcaster, radio maker, writer, and public speaker. She currently co-hosts The Friday Revue with Brian Nankervis on ABC Melbourne delivering Melbourne exactly what they didn't know they needed or wanted. She has written two whopping books and she has toured the books nationally at author events and festivals: Unseen (Affirm Press 2020) & A Question of Age (Harper Collins/ABC Books 2022). She is a sought after public speaker and facilitator with over 15 years of hosting live events. Jacinta has lived with Crohn’s disease for over 20 years and is an ambassador for the Crohn’s and Colitis Association and speaks and writes about the impact of living with chronic illness. She is also an active member of the arts & music community and is a board member for Melbourne theatre company, Rollercoaster.
Lauren Forner is the Editor in Chief at Mona Magazine. She has been awarded various prizes for her short stories and published a collection of poetry, Parts of a Whole, in 2021. Lauren has years of experience teaching English literature and creative writing to teenagers, adults and children and reads like her life depends on it. She is perpetually completing her Masters in Creative Writing and, like all good writers, working on the elusive novel. Lauren currently lives on Wiradjuri land in the Riverina, New South Wales, and dedicates most of her waking hours to her work in public mental health.
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