To all who;
a) Don’t know anything about Fibromyalgia, and are therefore ignorant of the facts
b) Have heard of Fibromyalgia, but believe it’s a nervous condition that is ‘all in the head’
c) Acknowledge there actually may be something ‘wrong’ with me, but think I exaggerate my ‘condition’ ~
This letter is intended for you with the hope of clarifying any incorrect assumptions you have concerning FMS (Fibromyalgia Syndrome), and enlightening you on how those assumptions affect me personally.
1. In regards to the belief that this is not a ‘real’ condition and those who ‘claim’ to have FMS are just looking for a little attention:
I assure you, I and the other estimated 400 million people in the world with FMS, did not wake up one morning and decide, “You know, I’m feeling a little emotionally neglected today. I think I’ll talk my brain into coming up with a fake illness so people will take notice of me. Furthermore, we’ll collectively talk ourselves into having painful joints/sharp pains that travel around the body/mind numbing fatigue/spots that make us want to scream when touched/skin that at times feels sunburned for days/oh, and let’s all make sure when we get up from our sitting positions we act like we’re about 90 years old, and lurch around the house like reanimated crabs with a limp.”
2. Concerning your suggestion that all I really need is a) exercise b) a better diet c) a hobby, ect. (read: “If you weren’t lazy and undisciplined you wouldn’t have this problem”):
Well, I used to travel all up and down the streets and hills by my house. That is until I started to experience ‘payback’ and could barely walk for days afterwards. So to use logic, the exercise didn’t prevent my increasing FMS flare ups, therefore more exercise surely won’t be the cure.
Also, to address the ‘diet’ issue. Please, please, stop doing that thing where you stare disapprovingly for a few moments at my midriff until you realize what you’re doing and hastily look away. Trust me, I am aware I’ve put on an extra 30lbs over the years since the Fibro really kicked in. I am the one stuck inside this body 24/7 desperately wanting and hoping for things to change. Before you judge too harshly, my disease is a central nervous system disorder. ‘Central’ meaning that from which everything else branches out from. This means it affects almost all aspects of my person. My body does not metabolize and lose weight like a healthy person’s does. In fact, I work very hard to maintain the weight I am at. Things could go wildly out of control were I not as disciplined as I am. I bet you dollars to donuts (no pun intended), I eat far less than you do and consume much healthier foods. So, walk a mile my friend, walk a mile.
3. When you think I sound like a whiny hypochondriac:
If I have chosen to let you into a small outer room in the weird and wonderful space that is ‘me’, feel favored. I seldom allow anyone in to the experience of my day to day with Fibromyalgia. I assure you, I am sharing a fraction of what it truly feels like to have FMS. I am highly sensitive to the fact that people can get burned out by the unintentional negativity those of us with chronic illness can fall prey to. This is why I only tell you a tiny bit, and more often than not, say absolutely nothing at all. You aren’t there to hear the cry of pain when my joints seize and I drop the full coffee cup all over the kitchen floor. You don’t see me intently trying to control my facial features so the pain I feel going up or down the stairs in the theatre isn’t obvious to anyone looking. You don’t realize the times when the blood in my veins has been replaced with cement, but I get up and carry on with the routine of the day anyway.
4. How to love and support those with Fibromyalgia, or any ‘invisible’ chronic illness:
We aren’t looking for anyone to feel sorry for us. What we really want more than anything is validation. Just to know someone believes our illness is real. That we aren’t faking or exaggerating our symptoms. We know we ‘look fine’ on the outside, but if you could turn our inside out, you would see the true face of our condition.
Support us through your patience and presence. Remember that this is not our chosen life, but the life we choose to persevere and thrive in, regardless of the unexpected path we must now walk called ‘chronic illness’.
So to those of you who took the time to read this letter, thank you from the bottom of my heart. And for those who chose not to listen, come here…..closer…come closer…why?…Cause I wanna whack you with my remaining ‘spoon’!
- © Kristine Kersting and ‘A Life Well Red’, 2016. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kristine Kersting and ‘A Life Well Red’ with appropriate and specific direction to the original content.