I said that to my husband the other day. "I am sick." He is well trained to say, "I know." But I answered back, "No, I mean real sick, the kind you or other people get." To which I was given a curious look. "You better not let a person with Fibro hear you say that," he said. I laughed because I had not realized how I said it. I was trying to inform my husband there was something extra wrong with me that he could relate to and give me sympathy for. Because he has experienced it, everyone has. See I was not just extra Fibro-sick, I was sick sick, like a cold or flu sick. Somehow in my casual lingo that translated to "real," when here all I do is fight tooth and nail for Fibromyalgia to be considered real, because oh it is so very real. I was surprised by this statement and really examined what it meant. Do even I still hold prejudice against myself for "only" having Fibromyalgia?
There has been many a time and many a patient who have complained people just don't understand what it is like to have Fibromyalgia. They don't understand the disabling symptoms, psychological torment, inability to function. They have no clue what it is like to have a chronic illness every single morning when you wake up, for every single minute of every single day for foreseeably the rest of your life. It never goes away and permeates every single aspect of a person's existence. And unless you have experienced something of this magnitude you definitely don't understand what it is like.
But do you really want them to? Because if they understood they would have it, experienced the hell of it, know it first hand. And I know I personally would not wish this on my worst enemy, let alone someone I loved, cared about or knew. I think back on who I was before I got sick and there was no way I would have even begun to comprehend what this is like. We are doing the best we can, sick as can be trying to get anyone to accept how serious it is. Spreading awareness and firing doctors who diminish our illness. One small painstaking step at a time to make life liveable again. Stay strong my friends, and take heart in knowing their inability to understand means they have not suffered the way you have. Then try and find a way to not want to kick them in the teeth because of it.
Thanks for joining,
Leah
