Jacinta Parsons on living with chronic illness ‘I couldn’t feel my body properly’
As a child, she associated illness with shame. But after the ABC broadcaster was diagnosed with Crohn’s disease, she had to learn to reconnect with her body
Like many chronically ill people, Jacinta Parsons was terrified of appearing to be sick. She could date it back to being a three-year-old, when her appendix ruptured. Already her fear of hospitals loomed as large: as doctors pressed down on her pelvis she convinced them there was no pain. Then, at five, the vulnerability of her father – badly injured in a car accident – frightened her so much that she searched for signs of sickness in the corners of the house. At six, her mother took her to a doctor to get her mysterious pains checked out. The doctor told Mrs Parsons she was making a fuss. Even at that young age, Jacinta could pick up on her mother’s sense of shame.
That shame remained attached to sickness for Parsons in adulthood. Shame of being defective, or a burden, or of repelling people with too much information. So when she landed her first presenting job in radio, after many years of not being able to work at all, she latched on to the smoke and mirrors of the studio.
“I learned how to use my voice, to make the stream of air that travelled out of me so consistent that nobody could hear the wavering pain beneath it,” she writes in her new memoir, Unseen: The Secret World of Chronic Illness.
Parsons is a familiar voice to many of us. She hosts weekday Afternoons on ABC Melbourne and, prior to that, had many regular stints at the ABC and Melbourne’s 3RRR. She’s also lived with Crohn’s disease for decades, suffering a horrific ledger of medical procedures, including participating in a disastrous medical trial that did immeasurable harm.
“I can stand up now and talk about the illness, knowing that people will feel confident that I can cope,” she says. “You know, because I have a job. But the reality of that vulnerability has not yet shifted. You still feel at the mercy of the world if you let them in on the secret.”
Parsons had nearly finished the book when the Covid-19 pandemic hit. With it came heated debate over what needed protecting the most: the economy or society’s most vulnerable. Nearly half of Australians live with a chronic illness, but as Parsons writes, during every report on a death, many of us were hoping to hear the words “underlying medical condition”. “For those without chronic illness those words were a comfort. For us, they were the opposite.”
Before Parsons got sick, she worked at a food relief charity. One of the regulars once had a growing business, before being stricken with kidney disease. Ongoing dialysis made it impossible to keep the business running, and as that failed, so did his marriage. He eventually lost everything. “Many of us forget that we are all hanging by a thread,” Parsons writes. “We rely on being physically and mentally ‘well enough’ to consistently put in a day’s work and earn a regular wage.”
In that sense, she’s been lucky, supported throughout by family and her partner, AJ. But all of our relationships are transactional in one way or another, a thought that has plagued her for years.
Writing Unseen proved to be a profound way of reconnecting with herself. In part, it has been possible because Parsons has been on effective medication for more than a year (though such improvements tend to be temporary) and in part because her beautiful prose arises from a new-found sense of empathy.
“It’s a love letter, almost,” she says. “I travelled back, but with a generosity and the wisdom of time. Having the capacity to explain it with the love that I wrote with it was a really lovely thing to do.”
Unseen: The Secret World of Chronic Illness by Jacinta Parsons is published by Affirm Press on 29 September