'Not an old person's disease': Norfolk man on arthritis diagnosis aged 12
- Credit: Danielle Booden
Joel Nelson is 36 years old, and has already suffered with a painful and incurable disease for a quarter of a century.
He was around 12 when he was told he had juvenile idiopathic arthritis, after first experiencing symptoms shortly before his 11th birthday.
The diagnosis took so long as even his doctors in the 1990s didn't really consider it as a possibility.
"People don't really jump to arthritis in kids," said Mr Nelson, who lives in Hethersett and works as an IT manager for the NHS.
"I felt very unique at the time, but there are children as young as 18 months who get diagnosed.
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"I spent months in hospital. Because of the nature of arthritis – flares and remissions – you feel like you're living a life that's a series of chapters. There's that one summer when you can do things, and then the next summer when you're in a wheelchair."
That was difficult to take for a teenager who loved playing sport and staying active.
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"As a young person you bounce back quite well physically from when you have a big flare, and remission can look very much like normal life.
"I was going from six months in a wheelchair to being able to play hockey. I was encouraged to do what I could, when I could."
He has spent much of his life since his diagnosis hiding it from others, often cutting ties completely with people rather than explain months-long absences caused by flares.
"People judge you on your worst day," Mr Nelson said.
"They see you when you're in a wheelchair, having surgeries or joint injections – whatever it may look like – and they assume that's you all the time.
"I went 20 years of my life not talking about it. If I had a flare and I couldn't do anything for a year, whatever sport club I was involved with at the time, I just didn't go back. That was my way of dealing with it, rather than explain it.
"It was easier for me to compartmentalise it as a chapter that had closed, and when I was in remission next I would take up cycling or whatever."
His outlook and way of dealing with his conditions changed dramatically since the birth of his son Dylan in 2019, even though it coincided with one of his bigger flares.
Now responsible for a family, he could no longer hide away when the pain came – it "changed everything" for him.
Mr Nelson said: "It made me think about how I am as a role model and it made me tell my story and be honest about my health. I went from one extreme to the other.
"Five years ago if I was unwell, apart from impacting my employer, I could lay in bed for a couple of days. Now with a little one I can't.
"Even though I'm confident enough to share my story, I also try to highlight the impact of the pressure of people who depend on you – you can't stay in bed. It's made me realise I'm a lot stronger and more resilient than I was."
Biologics – injections that prevent the immune system from attacking the joints – have been "an absolute life-saver" for Mr Nelson in terms of pain relief.
But they make him more susceptible to infection – bad at the best of times, terrible during a pandemic.
It meant he and his son didn't leave their home and garden from February to August last year, and he has had to remain very careful even though he has had both doses of the vaccine.
He will likely need a yearly top-up jab to keep him safe.
Going forward, he intends to keep talking about his experiences now he has found the courage to open up.
He said: "It's important to talk about the difficulties of living in chronic pain, but it's also important to celebrate what you can achieve because that's the only way we're going to change attitudes.
"Having open and honest conversations with people around you is really important. I wear coloured bracelets so my son, who is around two years old, can understand when I can kick a ball around with him and when I need to be on the sofa and fairly immobile."
And, such is his commitment to "being stubborn", he still hasn't given up hope of leading an active life going forward.
"I don't like putting the fire out on dreams too soon. Running might be a step too far but I'd like to get back to cycling.
"I still have hope that I can keep proving people wrong, because that's what I've done all my life.
"If I can't then I have my writing and raising awareness to help others."