I have always been active since I was young. Long-distance running was my strength. I wasn’t the fastest runner, but I represented my school in several events, and I loved the feeling of pushing myself.
When COVID hit, I became obsessed with home workouts. I practised high-impact workouts almost every day (not advisable), and eventually, I hurt my back. It took several months of gentle massage and daily stretches to recover fully. After that, I stopped exercising completely because I was afraid of hurting my back again.
Fast forward to 2023. I undertook a six-month postgraduate professional development qualification while working full-time. Juggling everything pushed me over the edge. Most of my evenings and weekends were spent sitting in front of my laptop, typing constantly.
Then the back pain returned.
This time, it never really left.
I struggled to walk. I couldn’t lie on my back. I woke up in the middle of the night because of the pain. I tried sleeping while leaning against the wall. Climbing stairs took me ten times longer. Putting on socks, shoes, or even my undergarments became a challenge.
Every morning, I would wake up and stare at the ceiling, waiting for the pain to ease slightly before pulling myself out of bed.
I thought it was just my old back injury flaring up again, probably caused by being too sedentary.
I had no idea it was something more.
The Diagnosis
In September 2023, my manager sent me home because I could barely walk. That was the moment I knew I needed help.
I booked an appointment with my GP. After weeks of waiting, I finally had my first GP appointment since moving to the UK.
During the appointment, my GP reviewed my symptoms and medical history. That was the first time I heard the words ankylosing spondylitis and axial spondyloarthritis. He said it was a possibility, but rare, and referred me for blood tests and an X-ray.
When the results came back, my X-ray was normal. Part of me felt relieved, but I was still in pain every day, and nothing really explained it.
A few weeks later, I received a letter asking me to book another appointment to discuss my blood test results.
Naturally, I checked the NHS app first.
That’s when I saw:
HLA-B27: Positive
I didn’t really know what it meant, so I started researching. I spent hours reading articles and forum posts, trying to understand what was happening to me and whether it could explain the pain I had been living with.
The more I read, the more questions I had.
Deep down, I wasn’t convinced I knew what was going on.
I kept thinking it might just be my old back injury coming back, especially after a long period of sitting and stress. When my GP first mentioned ankylosing spondylitis, I remember feeling unsure. He said it was a rare condition, and I suppose I didn’t think something like that would apply to me.
So I kept trying to find answers.
I was eventually referred to a rheumatologist for further investigations. After my first appointment, I was sent for an MRI scan.
Unlike my X-ray, the MRI showed sacroiliitis (inflammation of the sacroiliac joints), which is consistent with axial spondyloarthritis.
Finally, I had an answer.
I was diagnosed with non-radiographic axial spondyloarthritis (nr-axSpA), a chronic inflammatory condition that affects the spine and joints. It is closely related to ankylosing spondylitis, but without the structural changes that appear on X-rays.
At the time, I had never heard of nr-axSpA.
All I knew was that I was in pain and I wanted answers.
Having a diagnosis was both comforting and frightening. On one hand, I finally understood what was causing my symptoms. On the other hand, I realised this wasn’t something that would simply disappear.
Slowing Down
Before 2024, I rarely stopped.
I pushed through tiredness. I ignored warning signs. I told myself to keep going.
Living with nr-axSpA has forced me to slow down.
And in slowing down, I’ve started noticing things I used to miss: quiet mornings, peaceful evenings, and small routines that make me feel grounded.
Slowing down doesn’t mean giving up.
It means listening.
Redefining “Normal”
I used to think a normal life meant running for a bus without thinking, climbing stairs two at a time, putting on socks without struggling, and sleeping in any position without a second thought.
I also thought a normal life meant having no health worries.
Now, I see things differently.
A normal life isn’t about perfection.
It’s about living fully with what you have.
I still work full-time.
I still try new hobbies.
I still love food.
I still dream, plan, and grow.
My life may look different now, but it is still beautiful.
Moving Forward
These days, I’m learning to live with chronic back pain and inflammation.
Some days are easier than others.
Some days require a lot more patience.
Instead of seeing my diagnosis as something that took everything away from me, I’m slowly learning to see it as a gift.
Not a perfect gift.
Not an easy gift.
But a gift that has taught me lessons I may never have learned otherwise.
Patience has never been one of my strengths.
But living with a chronic condition has taught me that healing and growth don’t happen overnight.
There are flare days.
There are good days.
There are days when I feel almost normal, and days when I don’t.
I’m learning that it’s okay to adjust my expectations.
It’s okay to rest.
It’s okay to move at my own pace.
Final Thoughts
This blog is my space to document this journey: the ups, the challenges, the lessons, and the small wins.
I don’t claim to have all the answers. I’m still learning.
But if sharing my story helps even one person feel less alone in their journey with chronic illness, chronic pain, ankylosing spondylitis, or axial spondyloarthritis, then it’s worth it.
This is just the beginning.
And I’m choosing to live my gift.
Lots of love,
Ling