My pain became so bad that, at times, I couldn’t get out of bed. I relied on crutches to remain mobile. It’s amazing to think of that now. An earlier diagnosis may have prevented all of that.
In hindsight, I was just a teenager when the first symptoms of axial spondyloarthritis (axial SpA) started to show. It sounds unbelievable, doesn’t it? A teenager with arthritis. But that was my reality. I wasn’t able to take part in the same activities as my peers throughout High School, which was extremely difficult.
At first my parents were assured that I was simply experiencing growing pains but as I entered my late teens, the excruciating discomfort continued. After numerous doctor visits, an orthopaedic specialist decided the pain was being caused by flat feet and I was given insoles to wear as a solution. They didn’t help and through my 20s the pain I was experiencing intensified.
It became so excruciating that, at times, I couldn’t get out of bed. I was reliant on crutches. I struggle to think of that now. An earlier diagnosis may have prevented all of that.
I spent 5 years seeing the wrong specialists, searching for answers and being told ‘it was inexplicable pain’. Despite the fact I made all the doctors aware that my father had axial SpA, I was assured that ‘it was not something that young women get’. It was so frustrating, and my mood was low.
I finally found a rheumatologist in Edinburgh who identified axial SpA as being the cause of my pain. In the time that I’d waited for a diagnosis, my education and career had been severely impacted. Getting through college and university was a huge feat of endurance and I felt like my life was put on hold for a decade, while I navigated the healthcare system.
Getting an official diagnosis was a huge relief but the wait meant permanent damage had already been done. To my relief, when I did fall pregnant, I was lucky and the pain temporarily went away. So, while I carried my first child, I was pain free and continued to be so for 3 years after. Sadly, the pain returned between later pregnancies, but I didn’t mind as I knew how to manage my condition with appropriate exercises and medicines. I was just so relieved that I could finally start enjoying my life.
I was terrified that my axial SpA would mean I wouldn’t be able to lift my baby or play with my kids, but my body adapted and we found our own ways of having fun. Play time can mean anything – walking the dog, cycling, climbing the hills where we live…there are lots of options around us. Having a diagnosis gives me the freedom to be the Mum I always wanted to be. Knowing how to manage my condition and having the right medication is key.
As a Mum, I focus on what I can do, not what I can’t do and I’m able to have great adventures with my brood.
Getting an official diagnosis was a huge relief but the wait meant permanent damage had already been done.