When Simon spoke on the Lived Experience panel at our 2026 Parliament event, he described a journey that anyone with autoimmune arthritis will recognise. Symptoms moved unpredictably across his body. Swollen eyes, chest pain, bowel issues, problems with his hands, psoriasis, sending him to specialist after specialist over more than two years. Each visit ended the same way. “They would shake their heads at the end of the consultation and go, sorry, and then usher you out of the door,” he told the panel. “And that’s the end of it.”
Simon runs his own business and was a young dad through it all. The financial cost of the diagnostic odyssey was significant; the time cost was even greater. “Expensive money-wise, but also time-wise,” he said. The frustration was relentless. “You’re left there going, what the hell do I do next? It’s really singly the most frustrating experience of my life.”
Today, getting through a workshop or a client meeting takes more than discipline, it takes ritual. “I’ve even come in here, my routine, to get out of bed, slap myself around the face, honestly, literally, to get some adrenaline into the system, to get me going, and get under a cold shower,” he said.
“But that’s a regular occurrence, to be able to just get to even an early morning client meeting. But then there’s a penalty to that down the line, because your body needs to rest from doing that. So pushing through is great, but there’s always a cost and impact.”
Simon’s story is one of the reasons our advocacy is built around faster diagnosis, collaborative care, and an honest national conversation about the invisible cost of arthritis on Australian working life.