Saturday, November 27, 2010

The Cause For The Cause

I see a great many of you had some pretty awful emotional encounters this last week as we gathered with family and friends we have not seen in a while. More than a few were subject to off-putting remarks and rude, blatantly disrespectful behavior. It grieves my heart to see this and as unfair and inappropriate as it is, we have to arm ourselves so this does not keep happening to us! We have to have quick and effective responses at the ready and a thick skin their criticism and judgment cannot penetrate. I know it seems they should have compassion and understanding, it should not be our job to educate them about our condition and they most certainly should at the very least be nice, but unfortunately that is just not the way it is! We all learned a long time ago life is nowhere near fair and this is one of those blaring examples that remind us some people have mean and negative streaks and will take any opportunity to prey on the vulnerable in order to feel better about themselves.

One thing I have found in life is when people have a problem with you, it is actually THEIR problem, they have just found some creative way to manipulate it onto you! It is in getting a reaction they feel important or superior about themselves or garner some missing piece from their life. Keep that perspective in mind as you navigate through the mind-shift it will take for us, the Fibromyalgia patient body, to learn how to stop this outrageous behavior and take back control. As much as we try and avoid negativity sometimes it is simply not in our control. But we will not be left sitting there feeling emotionally trampled by mean Aunt Sally's rude comment about being lazy or Uncle Joe's drunk proclamation about being a junkie. I have been mulling this over for a few days now and think we should drop the name Fibromyalgia from the first few lines of our educational encounters.
"What is wrong with you?"
"I have a neurological condition that causes debilitating pain in my body and horrible fatigue."
"Oh you poor thing!"
"It is called Fibromyalgia."
"I have heard of that, its not a real illness..."
"Actually, according to the World Health Organization and Centers for Disease Control it is, you should educate yourself before passing judgment. It affects nearly 6% of the world population."
Catch my drift... Now that conversation can go any number of ways, but my point is we have to stand strong against ignorance and stand even stronger in our belief in ourselves and what we are fighting against. Our true enemy is the illness itself, but we cannot continue to allow others to emotionally abuse us. Just as we must stop seeking treatment from doctors that do not believe or treat us with respect, we must also not allow family or friends to get away with putting us down or dismissing our condition. This is not easy, a tough challenge I bring to you. I know how tired and painful and miserable life is with Fibromyalgia. I also know that half the battle is the emotional devastation derived from each attack on our sanity or credibility this illness inspires. But as far as I can see Fibromyalgia is just not going away, and as the lucky recipients of this complex and ill-understood condition we can leave things as they are or insist on respect, and then go about changing our behavior to demand it.

The purpose of The Fibromyalgia Crusade is different from the vast array of other Fibromyalgia organizations out there. We are not scientists, heading up new research. We are not doctors, revolutionizing a new standard of care. We are not government lobbyists or large associations with a board of directors intent on informing the masses on the latest studies or most current developments. We are not pushing a specific cause or claiming to know a cure. All of those groups are necessary, badly needed, but we fill a different niche. We are the patients. We are the ones that live with this day in and day out. We endure the physical attack on our bodies as our lives succumb to navigating a way through the limitations it imposes. We understand in a way no one else ever will what each of us is going through. And we are banding together to gain strength, support, ideas, understanding, help and yes, even a little bit of laughter from each other. We are also joining up to spread awareness and insist on a better quality of living for ourselves. We will not appeal to every Fibro patient out there, and some will dislike us for their own reasons, but we will not be deterred. We will exist in tandem with all the other groups and associations and networks out there because we are all badly needed! But if the frenzy we have whipped up in a little over 3 months is any indication, I get the distinct feeling it will not be long before we are quite a force to be reckoned with!

Thanks for joining,


  1. I recently found your blog, just what I needed. I feel I may have fibro, so here goes a new quest for me to find out. If you get a chance check out my blog.

  2. Welcome and I am glad you found us! Good luck in figuring out your health challenges. Sometimes it takes FOREVER to get a diagnosis. We are here when you need us...