Hello… My name’s Geoff and I’m a statistic.
Okay, I’ll admit it - I have a problem.
Unfortunately no twelve step program’s going to help me through this.
For a start, I was told I had lupus about eight years ago.
“Never heard of lupus… mustn’t be too bad,” I said leaving the surgery after being told to take some malaria pills and to stay out of the sun.
It was all a little confusing; considering the dermatologist didn’t exactly explain there was more than one type of lupus. It took an internet search to scare the hell out of me. And automatically I became one of the under-estimated five million people with lupus worldwide.
Eventually, I was told the type of lupus I had was only discoid.
“Oh, that’s good,” I said ignorantly.
And there’s a five percent chance it could progress to the more debilitating form, namely SLE.
“Hmmm, that doesn’t sound too good,” I mumbled, while considering the one-in-twenty possibility.
Did you know that women of color are 2-3 times more likely to develop lupus?
Oh… and only ten percent of people that have lupus are men.
“Is that a good thing?”
But wait there’s more! No two cases of lupus are exactly alike.
“I suppose that makes me unique then.”
And after digesting all those numbers and the associated information, I did feel unique. In Australia, it seemed no one really knew what lupus was – I didn’t.
We had to turn to American websites for information initially, and if we were lucky, there was a lupus organization close to home in the bigger cities on the coast. For a country with a similar land mass to The United States and a total population just above that of New York State alone, you’d appreciate there ain’t much in the middle of Australia. And you’d also appreciate the fact you have a national lupus organization in America. I suppose you don’t miss things unless you’ve never had them.
“I suppose The United States must have the numbers to justify the support and awareness,” I thought.
Once again lupus seemed like a numbers game. One moment it was a game of chance for many. The next moment, anyone with SLE could be forgiven for counting the days until they were feeling well again. And after meeting so many people suffering a great deal more than me, I eventually accepted I was just another minor statistic, but maybe one who was in the position to make a little difference.
For the first time in my life I became a volunteer and never knew how rewarding that could be. It was embarrassing in a way to be genuinely thanked for my efforts, something that had never occurred in a paid employment position before. It was embarrassing because I wasn’t the one who was really going through the tough times and didn’t deserve the attention.
When I have gained attention for lupus awareness, it’s ultimately been about everyone affected by the disease. Thankfully, I’ve recently discovered a new generation of like-minded people here in Australia trying to make a difference and giving us a voice.
I suppose it’s all about generating compassion and understanding. I’ve always believed with awareness, funding will follow. So if that’s what it takes, I don’t mind being a lupus statistic with a passion for raising lupus awareness worldwide. And I’m definitely not about to kick the habit - Especially when ninety percent of my lupus friends are women – good stats for a ten-percenter.
*Geoff is living with discoid lupus in Australia. He has cycled around America to raise lupus awareness and is the Gold Coast officer of The Lupus Association Queensland. His worldwide blog has had hits from over 130 different countries and his original cycling website has generated over 200,000 visits. Geoff has recently established an online lupus news site – The Lupus Magazine*