“My axial spondyloarthritis diagnosis took 30 years. While I waited for a diagnosis, I had to give up my career dreams. I worked in healthcare and loved my job. But I couldn’t stand-up for long periods, so had to give it up. Now that I’m diagnosed my life is very different, I’m rebuilding my career, studying and getting my life back on track.”
Growing up I was always in pain and I thought this was normal. I first noticed that I had knee pain when I was seven years old and doing PE at school was always difficult. My mum kept taking me to see our local doctor but it was just put down to growing pains. Looking back, it felt like no one was listening to my mum.
By the time I was 19 the pain had got worse. I kept going back to my doctor who sent me for three MRI scans and X-Rays, but they couldn’t work out what was wrong. At one point I was even fitted with braces by an orthopaedic consultant, but that just made the pain worse, it was unbearable, so I took them off.
I loved horse riding and enjoyed competing, but I was told I needed to stop. Eventually my GP said there was nothing else they could do for me and I had to learn to live with chronic pain. I was always tired and at one point I was even diagnosed with gout.
Aged 20 I started to develop an ache in my back, it felt like a grinding pain and I lived with that for the next twenty years. During that time, I saw physios, a back-pain unit and even a neurologist. Nothing we tried made a difference, I lived in constant pain.
My brother also lives with axial spondyloarthritis . Around 2001, while I was visiting him, we bumped into his consultant. He asked me if I had the condition but when I said I didn’t, he told me I needed to see a consultant urgently.
I went to see my GP and got a referral to a rheumatologist. Despite testing positive for HLA-B27 (the genetic marker often found in people with forms of inflammatory arthritis), I was told I didn’t have axial SpA .
Over time, I saw a spinal surgeon, a rheumatologist, was referred for physio and even a neurologist. I had multiple x-rays and MRI scans. I was told I had mechanical backpain or herniated disks or hypermobility. At one point I was even told if something hurt, I just needed to stop.
While I waited for a diagnosis, I had to give up so much. I gave up opportunities for career progression because I couldn’t stand for long periods of time. And I missed out on opportunities to compete with my horse. I thought living with pain was just a normal part of life.
By the age of 31, I was relying on my parents to care for me, I’d had enough, and I couldn’t cope anymore. The depression was crippling.
In 2015 things started to change. I was 38 and I went back to my GP who referred me to a rheumatologist again. At first, she told me that I couldn’t’ have axial SpA but after an MRI scan it was confirmed I had the condition. I had physio and was prescribed medication.
A year later, in 2016, I was once again in pain. This time my GP referred me to Norfolk & Norwich University Hospital NHS Foundation Trust. I was immediately put on biologics, despite a few issues I’m now managing to live well with axial SpA (AS). It is such a relief to be able to start rebuilding my life.