When people ask how I am I say " fine," or "a bit of pain today" or "struggling today" or "tired today". What I wish people would realise is that...


Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?

It is not imagined, self inflicted, all in the head or exaggerated. I cannot snap out of it, I cannot just try harder, I cannot try and have a good day instead of giving in to a bad one. I want people to put themselves in the position of the worst physical injury or disease they have had and imagine how they would have felt if people had said the above things to them. You have 2 broken arms? Just snap out of it. Come ten pin bowling with us - I am sure you will be fine if you just try a bit harder. You have flu? Well lying around in bed is not going to help, is it? If you just try and be positive I am sure you will get over it. I also want people to understand that loud and sudden noises, being crept up on from behind or being touched unexpectedly don't just upset me, they make me HURT MORE. Someone sneezing unexpectedly will make me jump out of my skin and that sudden movement sends jags of extra pain all over. 

Has any one told you that "you don't look sick?"

I have never been told that.

Tell us, who is your biggest support system while coping with fibromyalgia?

My very dear husband who responds to my bad and worse days by asking what he can do and then doing it softly and quietly with a little gentle humour.