I have always been an active person. I enjoyed challenging myself and staying busy.
When COVID hit, like many people, I suddenly had more time at home. Home workouts became very popular, and I became quite obsessed with them. I started doing high-impact workouts almost every day, and eventually, I hurt my back.
It took several months of gentle massage and daily stretching to recover fully. After that, I stopped exercising completely because I was afraid of hurting my back again.
Fast forward to 2023. I was completing a six-month postgraduate qualification while working full-time. Trying to balance everything eventually became too much for my body. 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 could not 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 became much harder. Even simple things like putting on socks, shoes, or my undergarments became a challenge.
Every morning, I would wake up and stare at the ceiling, waiting for the pain to ease slightly before getting out of bed.
I thought it was just my old back injury coming back, probably because I had been sitting too much and not moving enough.
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 explained that it was a possibility, but it was a rare condition, 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. I still did not have an explanation for what was happening.
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 was when I saw:
HLA-B27: Positive
I did not really understand what it meant, so I started researching. I spent hours reading articles and forum posts, trying to understand whether this could explain the pain I had been living with.
The more I read, the more questions I had.
Deep down, I was still unsure.
I kept thinking it might just be my old back injury returning, especially after months of sitting, stress, and studying. When my GP first mentioned ankylosing spondylitis, I remember feeling surprised. He said it was rare, and I suppose I never thought something like that would happen to me.
So I kept looking for 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 supported the diagnosis of axial spondyloarthritis.
Finally, I had an answer.
I was diagnosed with non-radiographic axial spondyloarthritis, a chronic inflammatory condition that affects the spine and joints. It is closely related to ankylosing spondylitis, but without the changes that appear on X-rays.
At the time, I had never heard of it.
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. After months of uncertainty, I finally had an explanation.
On the other hand, I realised this was not something that would simply disappear.
I had so many questions.
Would I always be in pain? Would I still be able to work? Would I have to give up the things I loved?
I did not know what the future would look like.
But at least I finally knew what I was dealing with.
Looking Back
Looking back, my diagnosis has changed the way I see my body.
Before this, I was someone who was always on the go. I liked staying busy, getting things done quickly, and pushing myself to keep moving forward.
I am still learning how to slow down.
I am learning that resting does not mean giving up, and listening to my body does not mean I am weak.
I do not have all the answers yet. I am still figuring things out one day at a time.
But having a diagnosis gave me something I had been searching for all along.
An explanation.
Final Thoughts
This is only the beginning of my journey with axial spondyloarthritis.
I am still learning, adapting, and finding my way through this new chapter of life.
I hope that by sharing my story, someone else going through something similar will feel a little less alone.
And I am choosing to live my gift.
Lots of love,
Ling