When I was diagnosed with juvenile rheumatoid arthritis (JRA), I didn’t think much about what the future held for me.
I was 9 and at that stage I knew I was going to be a famous fashion designer, get married at 23, have twins named Lynelle and Janelle and live happily ever after.
I didn’t consider for one minute that my aches and, sometimes excruciating, pains or my stiff and swollen joints would stop me living my life.
And I still don’t, nearly 37 years later, even though my life went in another direction to the one I had mapped out at 9.
As a kid living in a country town in far north Queensland, having JRA, or Arthur as one of my school friends called my illness, was a novelty.
Back then not many people had heard of JRA, let alone met a child who had it.
I remember a friend telling me I couldn’t have arthritis because her mum said I was too young.
In high school, some boys said I was “bunging it on” when I gave my teacher a note from my doctor saying I couldn’t take part in physical education classes because I had JRA.
I guess I can’t blame them because I looked and acted like there was nothing wrong with me.
Except when my joints were so stiff and sore that Mum had to rub me with linament after a hot shower and dose me up with paracetamol so I could function enough to go to school.
Then I smelt weird, looked unhappy, and moved stiffly and slowly.
I thought people probably didn’t think I was “normal” then.
I felt more normal when Mum showed me a magazine story about a boy in New South Wales who had JRA like me.
He was in a wheelchair because his arthritis was so bad he couldn’t walk but he was still getting on with his life.
‘See,’ Mum said. ‘There are other kids with rheumatoid like you. Some are even worse off. Always remember that no matter how bad you feel, there’s someone worse off than you, whether they have arthritis or not.’
That’s probably when it dawned on me that I had no cause to feel sorry for myself.
I had loving parents who cared for me when I was in pain, encouraged me to be independent and helped me to believe I could achieve anything I wanted.
But still I would have loved to talk to somebody like that boy who knew what I was going through.
As a teenager Mum took me to a few arthritis group meetings but the people all seemed really old and complained a lot, instead of sharing their experiences of how they lived life with their “Arthurs”.
While I understood everyone handled pain differently, by then I’d worked out my life with rheumatoid was better, even easier, if I stayed positive.
It seemed Arthur was more likely to flare up like an angry old man if I was stressed or depressed.
If I did the things I love – hanging out with family and friends, reading, watching my favourite TV shows, and going to the movies and for walks – I kept my positive outlook and Arthur was a calm, nice old man.
Today I’ve added travelling to my list of things I enjoy and the world has become a much smaller place in other ways too.
With the arrival of the Internet, it’s a lot easier to compare notes with other people with RA.
That’s why I’ve started this blog.
By sharing my life with Arthur and writing about the things I enjoy, I hope at least one more person with RA won’t think much about what the future holds for them.
They’ll believe they, too, can live a happy, fulfilled, and normal life with “their Arthur”.
I look forward to hearing from you.