When I was diagnosed with fibromyalgia, in 1996, I was told I was quite young to have the condition, then often referred to as ‘fibrositis’. It was (then) a condition thought mostly affect middle aged women. Today, scientists estimate that fibromyalgia affects 5 million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women. Of course the rest of the percentage would include men and children….. neither group is immune to fibromyalgia
Three excellent web sites:
http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp http://www.prohealth.com/library/showarticle.cfm?libid=15168 http://www.menwithfibro.com/home.html
So who wears the faces of fibro? I am my parents daughter …. so you have to know I can start a conversation with anyone, anywhere, and I do! Let me just say this: There are a LOT of people with fibro out there. And fibro, excuse my language, is an unforgiving bitch.
Right now I am in the throws of a flare. As my husband puts it (so well, I might add), I have an energy bank account. Fibro depleats it very quickly. So lets say I sleep an extra hour or two or take a nap to try to catch up, but on nights like this one where I have now been up for two hours (2 – 4 AM so far), I go and pull from that bank and over-draw it again. If it is already over-drawn I just go more into the red. It is an endless cycle of trying to catch up with sleep but instead of getting a good 7-8 hours straight each night, I am getting 2-3 hours here and there. It just is not the same.
The faces of fibro that I have met: several cashiers at various stores I go to; either they have it or know someone who has it. The people in line that you talk to when the line is backed up. Church family that know and /or are related to someone who has fibro. Your Facebook chronic pain family that is a closed group so you can talk openly without fear of being labeled a “Debbie Downer” or “Negative Nellie”….. and contrary to what people *want* to believe, we don’t sit in there and moan and groan all day….. this bunch of people has shared some of the funniest and most uplifting stuff I have ever seen! So don’t judge if you don’t know the whole story! The other day a man, about early to mid thirties; looked as healthy as can be; after listening to me ask for help with a couple of heavy items because “I have fibromyalgia” and (not because I am lazy)….. he told me he has fibro and went through disability. He was one of the lucky few…. got aproved on his first go. Me, naw…. I got that grey cloud that stays over my head. But that is (not) OK…. it is what it is… government BS, because I expected 1st denial 2nd get an attorney…. which I am now waiting for my hearing. I have to renew my disabled placard for parking every 6 months and this will be my 3rd card when I go get the form tomorrow as my 2nd one just expired.
The faces of fibro are everywhere….. places and people you would never guess… even children (that one gets me the most as I would not wish this on….Mmmmm Most people )…. Sorry….. I know bad… Ok, I would not wish this on ANYONE; EXCEPT! Those who doubt or say it is ‘all in your head’, ‘it does not exist’, ‘ you are being a drama queen’, etc. I then wish 1 week of pain scale 6+ fibro so you can *then say* that is ‘does not exist, is not real and then see who is being a drama queen’. I then wish it to leave you forever but not ever forgetting what it is like to feel every minute of every day like you have been beat with a broom handle and some days like you were beat with a baseball bat. It is very rare today to find a Doctor that ‘does not belive fibromyalgia exist’. Rare and usually law suit worthy. Even Dr. Oz is 100% behind those of us with fibro.
So next time you are grocery shopping, at a ball game, a concert, a PTA meeting, a waiting room anywhere…. note someone in that room, store, stadium, etc likely has fibromyalgia. Remember, not all disabilities are things you can ‘see’. I have gotten the ‘looks’ when I park in the disabled space that say, “You don’t look disabled”. No, I probably don’t, but you don’t know me and the race I run or the life I lead or the pain I feel. Not all scars are visable. And not all faces of fibromyalgia are who you think they would be.