“I want to open up more now, so I can raise awareness.”22 April 2020
Joel, 35, is an IT manager at an NHS mental health trust, and lives in Norfolk with his wife and one-year-old son, Dylan. Joel has juvenile arthritis, ankylosing spondylitis and psoriatic arthritis.
He recently turned to the written word as a way of dealing with the physical and mental challenges of his conditions. After starting a blog about living with arthritis, he found that his writing became a source of help for other people. So, he’s kept it going ever since.
He’s here to tell us his story.
“I wasn’t taken seriously because of my age.”
I was diagnosed with juvenile arthritis at 13 and ankylosing spondylitis a year later, although I first went to the doctor with symptoms around the age of 10. Because of my age, I was often told it was just growing pains, and nobody seemed to take things seriously.
Then, in my mid-20s, I started getting pain in my heel, blisters on my hands, rashes all over. This turned out to be psoriatic arthritis, which these days tends to be my default diagnosis on any paperwork.
“In the bad periods, it’s all ripped away from me.”
My arthritis fluctuates a lot. I go through a mixture of good and bad periods. In long periods of remission, which are close to a life without arthritis, I play a lot of sport and be as active as I can - I make the most of it, basically.
Then, in the bad periods, it’s all ripped away from me. Whenever I've been able to play for sports teams, I've had to suddenly leave them behind due to a flare up. In a day, I can go from playing rugby for my local team to not being able to walk. I've lost contact with entire groups of friends as a result.
“For years, I bottled up all my feelings.”
I used to put walls up and not talk about my condition, probably because I felt quite shunned as a young person with arthritis. I was in hospital a lot, and even missed an entire year of school, but was always left in the dark about what was happening to me. It made me feel very isolated, so I kept it all to myself for a long time.
But the truth is, the constant uncertainty around how I'm going to feel, and never knowing what else I might miss out on - it makes me feel depressed.
“I feel so much better after opening up.”
I started my blog, Joel Vs Arthritis, after one really crappy year.
At the start of 2019 I switched from biologics to biosimilars, but the switch just didn’t work for me - nor did it work for a lot of people. I was doing so well before, almost pain free. Being put on new meds seemed to reverse all that progress.
It happened around the same time my son, Dylan was born, which has made being a father both brilliant and daunting. It’s not just that my flare ups have gotten worse – they’re now a lot scarier because I have my son to take care of. I've had nightmares of being so fatigued that I drop him.
I didn’t want to leave these feelings to brew any longer.
“There’s no need to keep it to yourself. You’re not on your own.”
After writing it all down and telling people how I feel, it’s scary to think I wasn’t doing this before. It helps me so much.
Plus, it allows the people around me to understand what I’m going through. If I’ve been putting on a brave face all day and am close to breaking point, being honest with my wife – who’s there for me and Dylan everyday – helps all of us.
I hate the idea that someone right now is waiting around in pain and feeling like they’re alone, like they can’t talk about it. Well, you can.
We’re all in this together.
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