Living with an Invisible Illness
Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?
That it affects every single decision you make in a day. Depending on your pain level it can be some days you're good enough to go out to work, meet friends, have a night out, or in my experience knowing my pain never ever lessens and only gets worse, finding my limitations. It not only affects you but your partner, your family, your friends. People think just cause you don't look sick, tired, or in pain, that you're faking or exaggerating your symptoms. I spent a lot of time sending sites taking print out to my immediate family and friends to try help them understand what we were going through.
Has any one told you that "you don't look sick?"
Yes, many people say that or just stare at you. How dare you use a disability car space, how dare you use walking sticks, you look fine enough. I have never confronted people who do this but my partner does. He hates when people make snide comments or stare when they don't know whats wrong with you.
Tell us, who is your biggest support system while coping with fibromyalgia?
#1 my partner Keith. I even nominated him for a local hero award last year and he made the final 3! It wasn't about winning for either of us, plus he was so shocked to find out as due to my fibro fog I had forgotten I had nominated him in the first place lol, but for me it was to show him just how much he means to me.
#2 my immediate family who went out of their way to learn what was happening to me. My dad, taking me to docs or hospital appointments even though he stays an hour away.
#3 a huge thumbs up to my GPs, they listened from day 1, got me in touch with the right hospital specialists, worked out the best pain med regime for me, constantly taking care of me. Never once have I felt like I was being a pain or being made to feel like I was making it all up.
#4 my best friend Shirley, whose sense of humour keeps me laughing daily... keeps my mind off my pain for just a little while.
#5 all our nieces, nephews, great nieces and great nephews whose smiles and laughter fill our home up with joy.
