Jacinta Parsons was in her twenties when she first began to feel unwell – the kind of unwell that didn’t go away. Doctors couldn’t explain why, and Jacinta wondered if it might be in her head. But she could barely function, was frequently unable to eat or get out of bed for days, and gradually turned into a shadow of herself. Eventually she got a diagnosis, but knowing she had Crohn’s disease wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters. With chronic illness her constant companion, she had to learn how to function in a world set up for the well.
What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.
With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.