Saturday, November 13, 2010

All These Positive Fibro Experiences

As I have been opening my mouth more and more about Fibromyalgia, The Crusade, awareness and the general passion of my life to anyone and everyone that will listen I keep having positive experiences! Where I used to get glazed over expressions of distracted disinterest I am now finding myself bombarded with questions of genuine curiosity. I don't know if the difference is me or Fibro. No longer mopey and sad faced as I mumble that I suffer from an obscure chronic illness few have hardly heard of or know much about, I can only surmise its because I am now chipper and excited as I delve into my cause. I am a much more interesting and engaging person to talk to as I summarize this strange neurological condition that results in severe and widespread pain, cognitive confusion and horrible insomnia. The cause is unknown but it affects up to 6 million people in the USA alone and is quite debilitating (that's my quick summary, by the way). 

A few weeks back I was on the phone with GoDaddy. Abacus girl was attempting to navigate the world of domain names and websites and the rep started asking me about Fibromyalgia. As I was explaining what The Fibromyalgia Crusade is all about he was asking sincere questions to further his understanding. It was amazing! I clearly taught him more about Fibro than he did me about domains (that's okay, he did what I needed him to do), and at the end of our conversation he thanked me for my knowledge, educating him on something he knew nothing about. Then the topic of what we did for a living (ha ha) came up while I was serving Jury Duty. The jury and I were waiting in the deliberation room and I told them I was starting a health awareness campaign. They asked me what for and when I told them, two ladies quickly took over the conversation and started filling in the rest of the group as to what Fibromyalgia is! I was shocked and thrilled! Of course right as we were getting to the meat of the matter the bailiff came in to lead us back to court, but it was awesome nonetheless. Then yesterday I called the phone company to figure out why my bill had gone up. When she inquired about my internet usage I told her I was a blogger and online for like 10 hours a day. She asked what I blogged about and when I told her she was thrilled! Her sister-in-law and best friend both have Fibromyalgia and she jotted down The Chronicles web address to share with them. All of a sudden the world seems to care or at least want to know more about Fibromyalgia!

We have to hit this hard, my fellow crusaders! The world is listening now, and we need to start singing and not shut up until life with Fibromyalgia is manageable, we are no longer blamed for our illness and the general public has at least a common knowledge of it like they do M.S or Lupus. The more we talk, the more others know and the more they know, the more seriously we are taken. It is going to take HUGE amounts of education, fuss, flurry and promotion for us to turn acceptance and comprehension around but we can do it! So start singin'... Start talking to anyone and everyone that will listen. But I believe the way we go about it is just as important as actually doing it. Take your personal experience out of it. Refer to yourself as part of a campaign to bring awareness to an illness you actually suffer from, and then keep it general! Educate them with a brief summary that you are comfortable pulling out of your back pocket on demand and if you are met with doubt, skepticism or criticism kindly find a way to remove yourself from their presence and run away as fast as possible! Don't take their ignorance personally, let it dampen your passion. Then try again with the next encounter, and just keep promoting, educating and furthering our cause. As we all know Fibromyalgia is not just going to go away, and we are not going to stop until something gives, for the current state is unacceptable. So open up that throat, caged bird, and sing! Sing of a life of pain imprisonment and medical frustration. Sing about loss of function and limited treatment options. Remember, we are on a crusade and we are going to win!

And check out our beautiful logo: (more to follow)

Thanks for joining,

1 comment:

  1. Since my wife was diagnosed with fibro three years ago, I have noticed an increased public awareness of it. Hopefully this will lead to an increase in research, since it seems like right now doctors just keep throwing different medications at it, and hoping for the best. My wife has actually gotten off most of pain meds by following a gluten free diet (something else that is gaining public awareness) If interested you can read more about her experience at