For my fellow sufferers of Fibromyalgia, ME and CFS we have a unique issue.
To all outward appearances we appear perfectly healthy, and yet, as I have explained in many previous posts, we are anything but.
I will spare regular readers the long list of ailments we suffer from. The main ones for us all are pain all over our body that never quits, dizziness, brain fog and devastating exhaustion.
I think this is enough for people to realise that we cannot be judged by how we appear. And yet many do.
Unfortunately if someone asks what we suffer from we cannot say ME or CFS (at least in my experience). Firstly they have no idea what ME is (say the full name and watch their eyes glaze over) and secondly mention CFS and you risk receiving “oh you’re one of those” looks. Everyone is tired in today’s world, and if you call it exhaustion people have difficulty making the distinction.
Fatigue, exhaustion, aren’t they the same? Well no actually. Fatigue means you are very tired whereas exhaustion for us is not being able to get out of bed, sometimes for days at a time.
Still, it doesn’t quite get through to them.
Fibromyalgia though, well that’s a lovely long and confusing word so it must be important, plus didn’t one of those pop stars cancel a tour because of it? But she’s alright now though isn’t she, so when are you getting better?
Hmmmmm….give us patience.
Telling people there is no cure still doesn’t seem to sink in, because the next time you see them you are usually greeted with, “Hey how are you feeling, any better yet?”
So, what part of ‘no cure’ did you not understand?
Actually, I believe it is our fault that we receive these reactions. If people do not understand them it is the message and the messenger that are failing, in my opinion. Harsh that might be, but I believe we need a simple, easy to understand explanation of our illness or we will never be understood.
Suggestions? Mine is rather simple and to the point.
“I have Fibromyalgia. Basically it means every nerve in my body has decided to tell my brain I am in excruciating pain 24/7, without any reason, and there is no break from this as no-one knows why it happens or how to fix it.”
I know this leaves out many of our symptoms, but I find it gets the message across. If they want more information then go for it, but in the interests of raising awareness for our condition I find it is a great place to start.
If we try to tell them everything they will remember nothing, so baby steps are required.
If you have a better response please, tell me so I can use it!
By the way, as a conversation starter and to add to the credibility of our condition, please visit The Awareness Store and get yourself a Fibromyalgia bracelet or necklace or, if you’re daring enough, a t-shirt! No, I receive no commission or benefits whatsoever, I just think they are a great idea and my wife and I wear their purple bracelet.
It’s a great conversation/awareness starter, and they can be found here.