Earlier this year, after about seven years of back-and-forth with doctors and consultants, I was diagnosed with Fibromyalgia. It's not something I talk about very much - especially not publicly. Partly because I don't like to show weakness (personality flaw) and partly because it's hard to know what to say.
But I'm a writer - right?! So, surely there's got to be some way to explain what it's like to live with Fibro without sounding like I'm either sickeningly positive or woefully down-in-the-dumps.
I was thinking about this in bed last night, mainly because I'd found a really cool infographic on Pinterest that illustrated the Spoon Theory that many people use when talking about chronic pain conditions or invisible illness.
But, for me, Spoon Theory doesn't quite go far enough.
You see, for me, living with Fibromyalgia is a bit like constantly having to carry a backpack full of pebbles. Some big, some small, some enormous. (In this analogy, the pebbles are any of the over 200 symptoms associated with having Fibromyalgia.)
Some days, your backpack only has a few pebbles in it. It's not too hard to carry, but it's still an inconvenience. You know it's there, it makes day-to-day tasks a bit annoying and by the end of the day you really wish you could take it off and chuck it on the floor because your back's a bit sweaty. But you can't - you're stuck with it.
Other days, it has more pebbles in. Your quite-heavy backpack makes life hard. It's difficult to focus on things because you have this weight on your back that is distracting you. In fact, more than distracting you, it's hurting you. Everything you do, you are forced to battle this thing that you are carrying. Tying your shoes - ouch, backpack's making that difficult. Sitting in the cinema to watch a movie - arghh this backpack is really ruining my experience. Playing with your kids, working, holding hands with your husband - you can't ignore the backpack of pebbles. And you can't get rid of it. Your friend isn't allowed to carry it for you. Your doctor can give you some medication to help you forget about it for a while. But, essentially, all you can really do is try to learn how to cope with the reality of your pebbles and, maybe, make them a little lighter.
On the worst days, your backpack is so heavy, so crammed to the top with pebbles that you physically can't get out of bed. Those are the really sucky days. The days when you wish someone could just magically make your backpack go away. Or, at the very least, that they could see it. Because, the worst thing about your backpack is that it's invisible. No one knows it's there and, even if they did know, they'd have no way of understanding how heavy it is.
Which is why I'm writing this.
Because the only way people will have a chance of understanding is if we try to explain. And keep on trying to explain.
Being open about invisible illness does not make you weak. Asking for help carrying the shopping because your backpack is so heavy you're not sure you can handle one more thing - or, if you do, you'll have to add a few more pebbles to your load later on in penance - is not weakness.
Living with Fibromyalgia does not make you a weak person, or a lesser person. In fact, some of the most tenacious, incredible people I know are Fibro Warriors. And if I can go half-way to achieving the things they have, I'll consider myself pretty darn awesome.