“I felt like my sense of identity had been stripped. I’d always been the kid who swam, competing at national level, and suddenly all of that was gone. I couldn’t go to school and I had to sleep on the ground floor of the house because I couldn’t use the stairs.”
I can understand why doctors found it difficult to diagnose my axial spondyloarthritis at the beginning. I was a very young child. My symptoms started unusually young, when I was five years old, but I wasn’t diagnosed until I was aged 17. By the time I was diagnosed, I couldn’t go to school and I’d had to give up competitive sport. It was horrendous.
As a young child I ended up with ended up with severe psoriasis on the bottom of my feet. Seemingly randomly. None of the specialists I saw could understand why. The allergy test I had, the hospital examinations, nothing showed up – but there were days when I couldn’t go to school or didn’t want to. My feet would crack and end up bleeding.
When I was 13, I started having aches and pains. I’d been competitive swimming from the age of eight and I played rugby as well. Medical professionals said things like, “you’re a 13 year old boy – it’s growing pains; it’s normal.”
The thing is, I was also having bouts of sciatica in my legs and I don’t think that was normal. Three years later, in 2010, I had gut issues and my knee ended up swelling-up to the size of a football.
I spent eight days in and out of hospital and ended up going around the NHS system. By this point I’d seen so many different specialists – dermatology, physiotherapy, gastroenterology – and my parents were fighting with the health service.
I don’t think I would have been diagnosed if I hadn’t been referred to Nuffield two years later, in 2012. I only just gone under their care, when by parents took me away for skiing break. I was aged 17, and spent my days in the mountains, doing everything a normal teenager would do. But on the way back, my legs stopped working when I tried to get out of the car. I ended up bed-bound for four months!
That was the end of that chapter of my life and the beginning of a very different one. The rheumatologist at Nuffield took more of a holistic view and diagnosed axial spondyloarthritis quite quickly.
At the time, the biologic drug I needed, was prohibitively expensive. They needed to show no other treatment would work, so I spent four months very ill before finally getting approval in April 2013.
While I waited for the right diagnosis and treatment, I felt like my sense of identity had been stripped. I’d always been the kid who swam, competing at national level, and suddenly all of that was gone.
I couldn’t go to school and I had to sleep on the ground floor of the house because I couldn’t use the stairs. Social relationships kind of died. I look back and I’m surprised at where I am now given everything. At the time, I got so depressed.
The first two doses of my biologic were transformational – the psoriasis went, the gut problems and gastroenteritis went, and I felt kind of normal.
When I felt healthy again, I started realising what I actually wanted to do. For me, that’s the flip side to having axial SpA – I appreciate the second chance I’ve been given, so I’m more driven now.
Doctors said I wouldn’t be able to return to competitive sport, but I decided I wanted to run an ultra- marathon and I ran one.
Right now, I’m working in marketing and communications and training as a barrister and a triathlete.
Especially for younger people – and I’m 26 now – this diagnosis doesn’t mean your ambitions and goals have to disappear. With the right medication, and if you build healthy habits with exercise, it’s possible to live the life you want to lead.