The secret world of chronic illness
“Broadcaster 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. 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: Crohn’s disease. But knowing this wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters.”
Wow. This is a heartbreaking and heartwarming account of one woman’s live destroying disease and how she got through and lives with her condition. I could hardly believe that doctors had gotten it so wrong, and the huge impact of a clinical trial gone wrong on the rest of her life. Remember that you don’t have an obligation to participate in something, but you do have an obligation to make the most of what you have. This is something the author realised over time, thankfully not too late.
Jacinta admits that Indigenous Peoples and people of colour or low socioeconomic standing struggle to advocate for themselves in the system. That’s fine. My problem arose in that she didn’t consider other countries where healthcare isn’t a basic human right at all. I think of the horror of the USA system, and I consider Australian healthcare to be brilliant in comparison!
Possibly TMI time, but I’ve always struggled with ‘period pain’. I generally think of myself as quite stoic and straight-forward, but it’s something I haven’t bothered to go to the GP about. I manage to somehow forget that it’s a problem! Jacinta highlights why this is a BAD idea, and also why it’s something that women do that undermines themselves – and gives the statistics to back it up.
I hope that the medical students that I help to train have compassion and curiosity to look deeper into chronic health problems, and the self-awareness that it’s ok if GPs are sick sometimes too. This is a book not just for ‘normal’ humans to understand chronic illness, it contains insights relevant to health professionals as well. I would recommend reading it in small doses – as an audiobook I found it almost overwhelming, yet compelling to listen to at the same time.