I've been in pain as long as I can remember. Ten years later, I've finally figured out the reason. I'm twenty-three now. In the last year, I've read articles, joined forums, and memorised enough ingredient labels to have strong opinions on most of New Zealand’s biggest food brands.
Most of what I found when I first started researching AS was medically accurate and emotionally hollow.
This is the version I wish I'd found.
— Daniel
What AS Actually Feels Like
The clinical description of Ankylosing Spondylitis is this: a chronic inflammatory arthritis affecting the spine and sacroiliac joints, associated with the HLA-B27 gene, causing pain, stiffness, and in severe cases, fusion of the vertebrae.
Accurate. Also profoundly inadequate.
What it actually feels like is waking up at 3am with your lower back on fire, unable to find a position that helps. It's the specific cruelty of morning stiffness. It's fatigue that isn't tiredness exactly, but a kind of heaviness that sits behind your eyes and in your joints at the same time.
It's also invisible. That's the part that catches people off guard. On a good day, I look fine. On a bad day, I look fine. I've spent the last year learning to live inside that gap.
The Mental Load Nobody Mentions
There's a mental labour to chronic illness that doesn't get enough airtime.
The constant calculation: Can I eat this? Is this flare bad enough to cancel, or will I push through and pay for it tomorrow? Every social event, every travel plan, every ambitious weekend gets run through a quick internal risk assessment that happens automatically now. I don't always realise I'm doing it.
That mental load is real. Left unchecked, it quietly eats into your capacity for joy. Journaling helped. Being honest with the people closest to me, instead of performing wellness, helped most of all.
The Relationship Piece
Chronic illness changes relationships. I want to be honest about that without being dramatic about it.
Caitlyn and I have had to build a new way of communicating around my health. Food is the obvious one. What I eat is completely different to what she enjoys, and we've had to talk about that directly. At first, she felt like the bad guy. Now she knows she's just keeping me in line.
She's not my carer. That framing doesn't serve either of us. She's my partner, and part of partnership is learning each other's reality. That includes mine.
To partners of people with AS: ask, don't assume. You don't need to become an expert. You just need to be curious. To people with AS reading this: let people in. Not because you owe anyone your vulnerability, but because isolation is genuinely worse for you than disclosure.
What's Actually Helped
The No Starch Diet made the most measurable difference. Cutting starch reduced my inflammatory markers and lowered my daily pain levels in a way I could actually feel. It's not a cure, but it's a real, evidence-supported intervention worth taking seriously.
Movement helped too, once I figured out the right kind. Walking, yoga, low-impact and consistent. When you're in pain, the instinct is to stop moving entirely. With AS, that's the opposite of what you need. Movement keeps joints mobile and inflammation quieter.
I also had to get selective about information. Forums can be valuable and terrifying in equal measure. I learned to take what was useful and leave the rest.
And Caitlyn. Having someone who shows up consistently, who learned what AS is without me having to teach her from scratch every time, who checks in without making me feel like a patient. That's not small. That's most of it.
A Note on Hope
AS is progressive. That's true. It can get worse over time. Also true.
But "progressive" doesn't mean inevitable deterioration on a fixed schedule. Management matters. Lifestyle matters. And how you relate to your illness shapes your experience of it more than most people want to admit. That's not optimism for its own sake. It's just what the evidence looks like when you actually live it.
Some days are hard. Some weeks are harder.
But I'm twenty-three, I'm building a life I love, I'm moving to the Gold Coast with my partner, and I'm writing this on a Thursday evening with a handful of pork crackling and no starch in sight.
That's not nothing.