When I was first told I had fibromyalgia, I was so relieved to have a diagnosis. I’d spent months – like many fibromyalgia patients – wondering what was wrong with me and finally I had an answer. What’s more, it had a name. I had an identity, an explanation that meant people would finally understand.
Or at least, that’s what I thought.
A couple of years into my diagnosis I realised the name meant nothing. No one had heard of it and the name I’d wished for was met with blanks stares. I might as well have been telling people I had blob disease. No one had a clue. And even worse, my doctor didn’t have a clue and, therefore, I didn’t have a clue. This diagnosis, this name, it all seemed pretty pointless.
Fast forward a year or two and I got angry. Over 3% of the population have this condition (that’s a lot) and yet no one’s ever heard of it. How could that be possible? When I started this blog, I was on a mission to raise awareness and encourage more people to fight to be heard. I am immensely passionate about the fact that no one should suffer in silence. I don’t care whether it’s mental health or physical health, abuse, racism, sexual harassment, you name it. If you’re struggling, you tell someone and hopefully that someone should help you to fight your corner. Those with a voice should shout ten times louder to help those suffering in silence. And so I got on my megaphone.
Fast forward a few more years and we reach today, and I’ll be honest… things ain’t looking all too pretty. Everything above is still true; I’m still glad of a diagnosis, I still know it doesn’t mean anything, and I still want to fight to raise awareness. But, the cynic in me is starting to question a few things.
How is it possible that no one believes in what this is? How is it possible that my own doctor still doesn’t get it? How come people the world over aren’t desperate to understand this condition? How come my pain seems to be getting worse and no one seems too worried? How come the online explanation of fibromyalgia reads like a who’s who of crap, and yet we’re all just expected to carry on?
So now I’m starting to wonder, what is this thing they call fibromyalgia? Is this my diagnosis? Are you sure? Are you sure you got it right?