“WHAT DO YOU mean you have arthritis? Sure you’re only a child.”
That was the response I got from my fourth class PE teacher when I told him I wasn’t able to take part in sports that day because my knees had flared so badly they felt like they were on fire.
It’s a response I’ve heard versions of countless times since. Arthritis is just for when you get old and grey is the popular belief. But the truth is very different. At the moment in Ireland more than 1,000 children are living with juvenile arthritis (JA). It is a chronic condition where the body’s immune system attacks the joints causing severe pain, immobility and sometimes joint deformity.
Growing up I used to always be first to put my hand up for any activities. I loved sports in school and adored ballet. But that all stopped one morning when I was 10.
Waking up at my usual time, I found that I was paralysed from head to toe. All I could feel was severe pain coursing through my body. I felt like I had been hit by a bus. My joints felt like they were on fire, like they had acid rushing through them.
They were my first symptoms of what later was diagnosed as juvenile arthritis. Things that I previously had taken for granted, like moving my fork from my dinner plate to my mouth, playing with my friends or even getting out of bed became almost impossible because of the pain, swelling and stiffness caused by the disease.
For years I thought I was the only child in Ireland who had arthritis. There was no support services available and there weren’t even rheumatology specialists that worked specifically with children. I never met anyone else close to my own age who had arthritis.
I wondered why I was in constant pain and nobody else was and why nobody could help me. I missed so much school and although I was able to do some schoolwork at home, I missed out on all the everyday goings-on that happen among friends.
Don’t get me wrong, I still got to live a normal childhood; socialising with friends, lots of retail therapy, and going to college. But it was only when I was 23 that I first met somebody my own age with arthritis. And that changed everything.
I had just started my first job in financial services and my disease was very active. Nothing seemed to make a difference and I spent a month out of work. My GP told me that there was very little that he could do. To say I was scared was an understatement.
As a last gasp measure I went along to an Arthritis Ireland self-management programme. It was specifically for people aged 18-35 and at last I met people my own age who knew what it was like to have arthritis.
I found that having people my own age to talk to gave me such relief and reassurance that it was possible to live a normal life. I never expected that I’d make some fantastic friends who I truly have a unique friendship with. My friends and family have always supported me but I don’t think they really understand what it’s like to live with a chronic illness.
From that course I became an active volunteer for Arthritis Ireland. I was determined to work to make sure children wouldn’t have to grow up alone with JA like I had. I worked at a number of Arthritis Ireland events and fundraisers and found it very rewarding to be able to talk with children and their parents.
In 2011, I applied for the Vodafone World of Difference to try to win a grant to become a full time Youth & Family Officer for Arthritis Ireland and I was one of four applicants chosen. That was a big step because it meant I could dedicate all of my energy towards helping children with JA and their families.
Since then I have had the privilege of working with some of the most amazing children I have ever met. Kids that live every day in excruciating pain and despite this they continue to forge ahead and try their best at everything they do.
It might seem strange but often it’s not the constant pain that they find hardest to live with, but the sense of isolation and loneliness that comes with the disease. Virtually no one understands how as children they can have arthritis and that makes it a very lonely place to be. But, like I found when I attended that first meeting, there is a way to live a normal life with this disease when you find the right support.
In a world where all these children hear about are the things they can’t do because of their disease, we, at Arthritis Ireland, are working to show them all the things they can. We do this through the provision of information and support, independence breaks for teens, family days, workshops for parents on self management techniques and much more.
This JA pr0gramme is only available thanks to the generous support of volunteers, fundraisers and sponsors. To mark JA Month this September we are encouraging Transition Year pupils to show their support for children and teenagers living with JA by selling Jasper Pins.
The support of Irish schools will help to spread awareness of this disease and ensure that children living with JA today are not met with the same disbelief around juvenile arthritis that I once was.
For more information, or to sign up a school to sell Jasper pins , check out the Arthritis Ireland website.
To embed this post, copy the code below on your site
have your say