My story

By hiding my disability, I am denying a huge part of what makes me, me

Joel Nelson – creator of joelvsarthritis.co.uk

I’m Joel, a man in his mid-thirties who has had some form of arthritis or autoimmune disorder most of my life. Until recently, I have been terrible at talking about my situation through fear of being judged, missing out on opportunities, discrimination or just frustration from experiences where I have tried to explain it in the past only to get the standard stock responses of ‘so what old people get?’ or ‘but you were fine yesterday’.

After a rough 2019 and one of my most difficult flares (a flare is an acute episode of pain and inflammation) due to a treatment change and becoming a first time dad also possibly being a contributing factor, I became depressed, frustrated and isolated from my friends. As part of a VersusArthritis social media campaign called #PainNoFilter I was encouraged to share my story. I was completely overwhelmed by the response and comments with even the most hardened friends (I play rugby and didn’t expect an 18st battered-faced prop to have much empathy for my situation!) reaching out to me. This experience helped me realise that I needed to change my approach and I quickly realised the more I talked about it, the more pressure I took off myself and better I felt. I therefore started this blog to not only share my experiences and knowledge to try and help fellow arthritis warriors but as a bit of self-help to force me to keep up this new strategy. 🙂

The background

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


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