A little help for
the conversations
that matter.

I was diagnosed with ankylosing spondylitis when I was seventeen.

I was still at school, trying to understand what was happening, and spending a lot of time going to and from hospital appointments.

My parents taught me to arrive with a list of questions and notes about how I’d been feeling. With appointments often lasting just ten or fifteen minutes, and potentially months until the next one, they wanted me to make the most of that time.

It became a habit. Over the years, I’ve learned how to explain what’s been happening, be honest about how I feel, and ask the questions that matter to me. I believe that preparation has helped shape my care and the relationship I have with my doctor.

Alongside my own experience as a patient, my patient advocacy work has included working with EULAR, the pharmaceutical company UCB, and the National Ankylosing Spondylitis Society (NASS, now the National Axial Spondyloarthritis Society). I’ve also been part of Arthritis Research’s young persons’ panel.

But it’s a skill I was taught. If you’re young, newly diagnosed, or caring for a child, you may be working it out for the first time.

That’s why I’m building Room to Say: to help others prepare for those conversations, and help healthcare professionals understand the person in front of them.

Founder story, adapted from Max’s own account. Organisations mentioned reflect his advocacy experience, not endorsement or sponsorship of Room to Say.