‘In agony chasing a toddler around’ - father, 35, on 24-year battle with painful arthritis
Joel Nelson was just 10, on a day trip to the beach with his family, when he first noticed the signs of arthritis.
Two years later he would be diagnosed with the condition, which left him in a wheelchair aged 13 and has shaped much of his adult life.
Today, now aged 35, Mr Nelson is speaking out as part of a national campaign to dispel stereotypes that arthritis is reserved only for the elderly.
Mr Nelson, who lives in Hethersett with wife Anita and 15-month-old son Dylan, said: “We were at the beach in Great Yarmouth for the day and I noticed that I had a stiff leg and was struggling to keep up with my family by the end of the day.”
Pain started to appear, but it wasn’t until he was 12 that he was diagnosed, initially with juvenile idiopathic arthritis.
“Back then nobody pointed to arthritis in children,” he said. “They hung weights off my legs thinking it was growing pains.”
Though doctors hoped he’d grow out of it, by the time he was 13 he was in a wheelchair, missing months of school, and school holidays, at a time.
“When you are a child you adapt a lot easier than I do now,” he said. “When my arthritis got bad at the end of middle school, I missed all of the summer holidays and then I was in high school. That’s daunting enough, but when you have missed the last bit and then the summer holidays and you have to turn up with a limp and explain what’s going on, it was difficult. I still struggle with that psychologically.”
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Told at 16 he had ankylosing spondylitis, it wasn’t until he was 20 that Mr Nelson, an IT manager for the NHS, was diagnosed with psioriatic arthritis.
Medication prescribed in his late 20s showed how far his symptoms could ease, giving him a “new lease of life” and a love of running and rugby.
But in the same month his son was born, in early 2019, his medication was altered once more, and stopped working.
“It was utterly miserable. I had gone from being player of the month to not being able to do a lot outside the house,” he said.
“The feeling of being left in a hospital bed aged 11 when your parents have to go home to look after your brothers and sisters came back. The feeling of missing out.
“It’s difficult because the way you describe it to people is like the swing of a pendulum. When I’m healthy I’m this confident, outgoing social person. When I’m less so I’m withdrawn, going to bed at 3am and getting up at 6am, but to everybody it’s just like Joel has disappeared.”
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Today, he says, his symptoms feel like a “roll of the dice”. Pain is his biggest problem, as well as some stiffness and uncomfortable rashes.
And lockdown has been a bitter pill to swallow. Though Mr Nelson said he knows there are people in worse situations, he had felt optimistic about an upcoming medication review.
“That’s the bit that really hurts,” he said. “I was the pin-up for what you could do with arthritis if treated well, but now there’s reversible damage.”
He said he wouldn’t know its extent until x-rays were done, but said his fingers had become crooked since the flare-up began.
Other appointments are now on hold, and with nurseries closed and his wife, an auxiliary nurse, busy, his days are spent keeping up with his son.
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“You are up at 2am thinking I’ve got to look after the baby,” he said. “You are in agony chasing around an active 15-month-old, crying in pain changing his nappy and feeling like the worst parent in the world, but that’s the reality.”
As a release, and a way to share his pain with friends and family, Mr Nelson has set up a blog - joelvsarthritis.co.uk - and has so far had a “crazy” response to it, with people getting in touch and asking to share their stories.
“Having been in a fairly awful place with my physical health,” he said, “confidence is hard to come by and this has helped.”
He praised his “hero” wife, who is juggling 12-hour shifts, cooking dinner and family life, but said for younger people finding support could be hard.
“It’s important to say that it’s not just about me, it’s the whole ripple effect on your family and friends.”
Mr Nelson has spoken out as part of Versus Arthritis’ campaign ‘It’s not alright, it’s arthritis’, which, launched in partnership with Global Radio, aims to challenge the assumption that the condition is inevitable, and confined to older people.
Around the UK, more than 10m people affected, two thirds of whom are under 65.
Those in need of support can call the helpline on 0800 5200 520 for free, from 9am to 8pm on weekdays.
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