“I never met another child with the same condition as me”
Liam Jenner, 23, has had arthritis since before he can remember. We spoke to him about how the condition has impacted on his life, thoughts for the future and what motivated him to start a podcast discussing his condition.
I was diagnosed before I really had any memory of it
I must have been about two or three years old when I started to get skin rashes all over my body. My mum took me to the doctors, and they did lots of tests. We were living in Zimbabwe at the time and it wasn’t anywhere near as medically advanced as it is here.
Initially it was put down to skin conditions like eczema, but then I had a biopsy from my wrist joint sent to the UK and the results came back to say I had sarcoidosis. I was later re-diagnosed with Blau syndrome, which is a combination of a number of symptoms, including pain and swelling of joints, inflammation of the eye, skin rash and fevers. It’s rare and starts in early childhood, mainly before the age of five.
My early education was hugely affected
Despite everything, I was quite an active kid, and sports were a big part of school in Zimbabwe. But I remember having pain in my joints. My ankles and wrists would swell to balloon size and would stop me being able to walk. I spent a lot of time in bed on bad weeks like this.
Going back into school my friends would ask me where I’d been, and I would just say I’d been unwell. It was quite hard to explain to other children who knew nothing about arthritis, and I didn’t fully understand myself at this stage.
There wasn’t a lot of awareness about arthritis in children. My mum would try and find other kids through a forum when we had dial up in Zimbabwe, but I felt like I was on my own through most of it. It felt very isolating.
It was a huge relief when I was still able to walk
When I was first diagnosed my mum was told that by the age of twelve, I wouldn’t be able to walk or see and would be in a wheelchair needing assisted care. So, when I continued to be active, it was a blessing. My condition has caused huge limitations for me, but I feel quite lucky that I’m still able to do things.
We moved to the UK when I was about twelve. I started on new treatments that we didn’t have access to in Africa and my condition had become stable by this point.
The joints in my wrist are much better than when I was a kid, but it’s my knees and ankles that are worst affected now. Apart from that, my outlook is much better.
It impacts on all aspects of life
I’ve left school now and work five days a week. I used to work on the shop floor but now I’m seated in an office helping customers over the phone because the pain in my ankles is too much. On a bad day, I struggle getting out of bed in the morning. Fortunately, my employer is flexible and understands the nature of my condition.
I have to be cautious about physical activity. I have a natural limp on my left side because of my ankle and I can’t run without extreme pain. I find swimming helps, but even walking can be very hard. Even going into city centre or meeting friends for coffee, can be knackering. When you wake up in pain it drains the motivation out of you.
You learn to find a balance though, I don’t push myself too hard if I’m having a bad day, but I try not to let it stop me from doing the things I want to do.
I’m now starting to think about moving out and living independently, but it’s daunting. I can’t help but think, what if all of a sudden, I can’t work and support myself financially.
Being honest with yourself and others is key
Being honest about my condition has helped me massively. Some people won’t fully get it, which can make you feel insecure. But I think if you take time to explain, people will generally listen.
Make the most of any support available. I first came across Versus Arthritis on Instagram and reading about other people’s experiences and advice has been reassuring for me. And try to include family and friends in your journey as much as possible, my mum has always been a huge support, encouraging me never to let things stop me doing what I want to do.
It’s been great meeting Paul through work too. There’s thirty years between us but we share very similar conditions, so we’ve been able to share experiences. Last year we decided to start a podcast together. Our motivation came from simply wanting to have a conversation. Just creating a space to talk openly was really helpful. And we got lovely feedback from listeners too.
The future might be daunting but I’m going to continue to take each day as it comes and hopefully help some other people along the way.
If you’d like to talk someone about your arthritis and how it’s making feel, please don’t suffer in silence. Talking can really help. You can call our free helpline on 0800 5200 520. We also run local support groups and services for people of all ages. Find the nearest one to you.