Jacinta Parsons on living with chronic illness: 'I couldn’t feel my body properly'

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.

Related: The idea of 'too much information' is bad for our health. It's time we ditched it | Kylie Maslen

“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.

“When you can’t participate in the energy of the world, what is your worth?” she says. “With a couple of my friends I thought, I guess this is it. Thanks for everything but I have nothing to give you.”

At one point, having had to move back in with her parents for full-time care and for financial reasons, she decided that she would let AJ go – and upon making that decision, she was fuelled by a strange new energy. But AJ did not accept the offer of release. He made it clear that Crohn’s disease wasn’t something that had happened to Parsons, but to them both.

Some of Parson’s most demanding relationships were with medical professionals – though she’s quick to point out that there are wonderful doctors out there (anyone familiar with Parsons on the radio will know her to be as kind and considerate as she is curious about the world). During the patient’s game of “doctor roulette”, Parsons would attempt to improve her odds by trying to forge a connection, and to always be cheerful. As she writes of one surgeon, “I would try to look like the sort of person he’d be interested in keeping alive.”

Over the years, Parsons learned to dissociate from her body, to the point that when she took part in an eight-week meditation course at hospital, she found it a challenge to follow instructions.

“I couldn’t feel my body properly,” she says . “If they asked me to feel my knee, I thought, I don’t know how to feel that.”

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.”

The subject of hidden pain is getting more oxygen of late. In Melbourne-based podcast Chronically Fully Sick, Chloe Sargeant and Joanna Nilson irreverently discuss endometriosis, IBS, PMDD, fibromyalgia, imposter syndrome, identity and more. Gabrielle Jackson, who wrote Pain and Prejudice: A Call to Arms for Women and Their Bodies, recently hosted a book club episode for The Guardian in which she talked to Katerina Bryant and Kylie Maslen. Their respective books, Hysteria and Show Me Where It Hurts, are “not just life affirming for people who have lived with ill-defined maladies and doubt; they are life changing,” Jackson says.

Related: My life has been defined by anxiety. The pandemic has helped me let go | Ewa Ramsey

As her illness progressed, Parsons endured years of confronting death, which she says relieved her of her daily concerns of living. “You realise nothing is too big for you. Everything should be encountered with wonder and humility. One of the jewels of illness is that you are so deconstructed that you have an opportunity with the reconstruction. You think, ‘What will I make from this?’”

The trap is that we laud people who are gracious in the face of pain or death, or who display post-traumatic growth, leaving no space for their inevitable fear and anger.

“The extent to which illness changed me was unbelievable,” says Parson, “but I don’t really talk about it in the book because I don’t feel that’s the most helpful thing to do. It’s almost like it should not be spoken about until you are ready to encounter it … If it’s your thing to encounter.”

• Unseen: The Secret World of Chronic Illness by Jacinta Parsons is published by Affirm Press on 29 September