Issue #1 of Pain in the AS
I was 30 when my rheumatologist finally ran the right test.
One year of back pain that wouldn't quit. One year of being told it was probably a disc, probably posture, probably stress. One year of googling at 2am wondering why lying still made it worse instead of better.
In the end, it was a blood test. A single marker — HLA-B27, positive. That was it. A year of my life, and the answer was sitting in my bloodwork the whole time.
When the diagnosis came, I felt three things at once: relief that I wasn't imagining it, shock that this was a real condition with a name I couldn't pronounce, and a slow-dawning devastation when I started reading what it meant.
That last part — the reading — was a mistake. Not because the information was wrong. Because it was all doom, no map.
So here's the map I wish I'd had.
The most important thing nobody told me: rest is not your friend.
When you're in pain, everything in your body says stop. Lie down. Don't move. Give it a rest.
With AS, that's exactly wrong.
This disease is inflammation attacking the joints of your spine. Left alone — kept still — it tries to fuse them. The pain you feel after sitting too long, standing in a queue, or an afternoon on the couch? That's not coincidence. That's the disease doing what it does when you stop moving.
I can't run anymore without pain. I've had to grieve that. But the answer wasn't to stop moving — it was to find the movement that works. The physios say "exercise is important." What they don't say is: movement is the actual treatment. It is the closest thing AS has to a daily medicine that doesn't come in a box.
Nobody put it that way to me. I had to figure it out the hard way.
A few other things the websites won't tell you:
The fatigue is real. It's not tiredness. It's your immune system burning energy fighting itself, and some days it wins.
The disease is invisible. You will look completely fine. People will not understand why you can't stand at a concert, or why you need the aisle seat, or why you left the party early. You will spend energy explaining yourself that you don't have to spare.
The diagnosis is the beginning of the treatment journey, not the end. Finding the right medication can take years. That's not a failure — it's just how it works.
I'm Andrew. I have AS. I got tired of every resource being written by someone who doesn't have it, and started this newsletter to write the one I wish had existed.
Every issue: practical, honest, written by someone actually living it.
If that's what you need — welcome.
— Andrew