This week, Mona's Editor in Chief Lauren speaks with the woman behind Unseen — the secret world of chronic illness, Jacinta Parsons. They talk writing, sharing and courage, in amongst the messy world of doctor's appointments, surgeries and disclosures.
I have to say, writing the review of Unseen that was published was quite a challenge for me. As someone who has suffered with a chronic illness for two decades, I have oscillated between transparency with Mona readers and understanding that my disclosures may have an impact on my professional work. It’s been such an interesting and reflective process for me, and Jacinta has been extremely supportive and gracious in this and her work with Mona on this interview and review.
Jacinta, Unseen is about your most intimate experiences with your body, why was this a story you thought needed to be told?
I realised how important it had been for me to hear other people speak about their experience of chronic illness because it helped me feel less isolated. I wanted to add my voice to the growing community of storytellers and I specifically wanted to do this because I think the more we talk about our experiences, the more we understand that they have a place in our world. I think it's so important that we don't feel like we have to hide the parts of us that might challenge other people.
I’m sure many readers have similar stories but don’t know where to begin in sharing them and overcoming the shame you discuss very openly in Unseen. How do you find the courage to embark on telling a story like this?
I found it so much easier to tell this story by breaking it down into the various feelings that I had about chronic illness. It's incredible sharing your story, in writing, as it allows you to fully take control of how that story is fully told. To tell the whole of it, not just a small part of it. The whole of it is really the point and it's not often that we get the chance to tell the whole of it. The entire experience is not just the facts of what surgeries of the diagnosis — but the way the experience changes us at a very deep level. I started writing about shame first because I really needed to find a way to understand how shame intersects with chronic illness.
In terms of the style of authorship, there is a balance between the personal, your own qualitative research and canvassing quantitative research. Where does a writer start if this is a style of storytelling they are interested in?
I found it a really natural way to write. Every time I would write about my experience I would ask myself how much that reflected other people's experience or the research around the experience I was having. So adding those voices in was actually really natural. And of course, I really wanted to make the book as diverse as possible and have as many perspectives as possible of illness and disability.
You discuss COVID briefly in Unseen but the longer term impacts weren’t evident at the time of publication. How do you seen that COVID has affected individuals with chronic illness now we are “post-COVID”?
I think the entire pandemic was a wake up for the broader society on the experience of chronic illness. We are slowly understanding how our health can be quickly compromised. I'm watching keenly to see if we will ultimately learn important lessons of equity in our health systems from this experience. I am hopeful that we have a clear view of the health vulnerabilities for particular communities but it remains to be seen as to whether we have the will and the capacity to create more equitable systems.
As someone who works primarily in story telling and story sharing both as a writer and on ABC radio, what have been the stories that have moved you the most or stuck with you?
I think the overwhelming story that has stuck with me with all the stories that I have heard is how good people are. We don't hear enough about the fact that people are tremendously resilient and kind. I hear that story time and time and time again and know for sure that the overwhelming majority of people work really hard to try and make our world a better place. I think it's really important to start understanding ourselves in this way — to know that we can put more faith and have higher expectations for what the world can be.
Many individuals living with a chronic illness would class themselves as living with a disability. Do you know of opportunities for chronically ill / disabled writers that might be a helpful start? (Eg Wishbone Words magazine)
I wish I did. I would love to know of opportunities to support chronically ill/disabled writers - because I know that the more stories that are shared, the more the broader community understands the diverse nature of chronic illness/disability. Storytelling is also the best way for us to walk in the shoes of someone else, to grow empathy for the world around us.
There are references to Fiona Wright’s essay and Gabrielle Jackson’s Pain and Prejudice that provide examples to your reader of how misogyny underpins the way women experience chronic illness and ill health. From your own personal experience, were there moments when you felt your pain or your symptoms were being treated a particular way because you were female?
My gender has played a huge part in my experience of illness. Just the other day I found out that my disease hasn't had studies conducted on how it might be impacted by menopause. It's things like that, that remind you how far we are from an equitable treatment of women in the health system.
If we know women or gender diverse individuals with a chronic illness (which we probably all do if we were to remove the invisibility of these conditions) what are the most helpful ways we can support them?
Always the most helpful thing that you can do as a friend or family member is witness and listen. It's a hard job to be a supporter and carer — because you have to deal with the painful reality that you might not be able to fix anything. Being a carer or simply having a friend who is going through health challenges can be so difficult because we have to witness people we love go through so much, and have limited ability to change that for them. Carers and friends need to make sure they are caring for themselves also, and seeking support.
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) and 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 and 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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