Because every story starts with a beginning, right?
My name is Joel and this is my story (originally written 11th October 2019):
So, probably the most daunting post I’ve ever written because I’m not very open with this sort of thing but tomorrow is #worldarthritisday and @versusarthritis are asking people like me to share our experiences as part of their #painnofilter campaign.
Since 11 I’ve had juvenile arthritis, that became idiopathic arthritis along with ankylosing spondylitis at 14, then in my 20’s psoriatic arthritis. My body’s own immune system attacks itself in my joints, organs, skin, nails and eyes. I’ve had years in a wheelchair and I’ve had years completely symptom free where I’ve run half marathons, played hockey, rugby and ridden 100 mile sportives. I tend to go a bit mad when I am able to do things – clock is ticking and all that.😕 I think this is what makes it so hard for me to talk and be open about my situation – after all, how do you explain to your mates you’ve spent years playing sport with that some days you can’t even walk!? It’s more than the pain; it’s the fatigue, isolation, ability to turn your world, career and social life upside down overnight and to most people who know me, it’s completely invisible.
My condition is controlled by a cocktail of anti inflammatories, painkillers, tablets to counteract the side effects of the treatment and biologics/anti-TNF injections that dampen my immune response but this in turn makes me susceptible to infection…which is why you might notice I’m always ill, have a cough, cold, temp or work from home when someone in the office is like death warmed up!
Its sh*t but I’m realising as I get older, it’s worse to keep trying to hide it, to be worried that it’s a sign of weakness and that I might miss out on opportunities if people know the truth as it only makes my battles (and those that are worse to come) harder to tackle on my own. I’m also denying a huge part of what makes me, me – after all, I’m pretty sure I wouldn’t be so determined, driven, stubborn and considerate if it wasn’t for all those months in a hospital bed, years missed at school, not being able to do things or learning to deal with constant pain and bad news. So that’s me. Go easy. X