About Pain in the AS

I was diagnosed with ankylosing spondylitis in my early 30s, after about a year of misdiagnoses. By then I had been told my back pain was muscular, then postural, then anxiety. It wasn't any of those things.

The AS I eventually found online was mostly clinical — treatment algorithms, BASDAI scoring, drug mechanisms. Useful, but not what I needed at 2am when I couldn't get comfortable in bed and had to be at work in five hours.

What I needed was someone who had been through it. Not a doctor telling me what AS is, but another patient telling me what AS is actually like — the morning stiffness that fades if you keep moving, the mental weight of a chronic diagnosis, the insurance fights, the fear about biologics, the conversations with partners who don't quite understand why you're tired again.

That's what this site is. Twenty years of living with AS, written down for people who are earlier in that journey than I am.

I manage my AS without biologics — mild-to-moderate severity, consistent exercise, anti-inflammatory diet, good sleep habits. That's my experience. It's not a prescription, and it won't be everyone's path.

I'm based in New Zealand but writing for a global audience. AS doesn't respect borders and neither does the isolation of a rare, invisible disease.