From educated in discomfort to educating the world
Why today’s children with Juvenile Idiopathic Arthritis are tomorrow’s game-changers.
As a child with arthritis, I was fearless. Stubborn, I had far more resilience back then than I do as an adult with Juvenile Idiopathic Arthritis (JIA). As kids so often do, I made the pieces of the game handed to me my own. Some days, I revelled in the uniqueness of it all — Others, I sobbed alone in a bleak hospital ward in a bed that sadly became more familiar than my own.
Surrounded by children far younger than me, I resorted to friendships with my nurses as they welcomed me back with each stay — all whilst my friends seemed to mature at breakneck speed as I missed months of high school. My education was in pain, an apprenticeship beyond my years — discomfort rather than textbooks.
A second life
I owned my arthritis as a teenager. I had little choice, given I was a wheelchair user. Still, when, via a lot of support and adjustments, I was able to go to University a week after my 18th birthday, I buried it all — reinvented me — and for the next fifteen years, I barely uttered the word arthritis.
Instead, I left the crutches and twisted knees of my youth behind for hockey sticks and an electric pace I discovered in my early 20s after a long period of remission, more from sheer determination to cover my flaws than any natural ability. I would spend my Sundays in agony, recovering in scolding hot baths for hours on end, and when I couldn’t walk, I covered it up by saying I had a fever, locked my door and closed the curtains until it passed. Sometimes, I spent entire weeks in a room. And, for a time, it worked. It certainly felt easier than trying to explain how this confident young man had a condition that other students had only heard of from their grandparents.
Game over
A nasty flare coincided with the arrival of my son, and with it, the house of cards fell. The game was up. I could not only no longer hide it, but at this moment, when upsettingly I couldn’t carry him due to crutches, I realised I had to be a better role model. So, in 2019, I became an advocate almost by accident. One minute I was writing about my experiences on the advice of my GP as my mental health faltered from the series of chapters I had tried to live; the next, I was an arthritis ‘patient leader’.
Of course, none of this was by chance. I think I was destined to end up here. The experiences that turned that scrawny child into a stubborn, determined young man hellbent on proving people wrong, was always going to end up finding his voice. It just took the jolt of parenthood and discovering the gap between support as a child with JIA and the lack of it as an adult to light that fire. Once I started telling my story, I couldn’t stop.
The game-changers
Cut through the unsavoury side of social media, and you will see a trend that rapidly escalated through the events of 2020. Young adults talking about their rheumatic conditions openly. Sharing pictures on Instagram and, for what feels like the first time, having candid conversations about previously taboo subjects such as fatigue, disability and the mental health impact of living with these challenges.
These game-changers have built a community of inspirational people that can genuinely change the perceptions of arthritis in younger people — smash down walls, rebuild attitudes and with it, the support systems barely afforded to adults with JIA.
I am proud to be a part of this movement, and my experiences with JIA, although unwelcome, gave me the strength and character to willingly be amongst the frontrunners for change. Despite pain, I wouldn’t change a thing.
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