Maybe you don’t know anything about fibromyalgia and are therefore ignorant of the facts. Maybe you’ve heard of fibromyalgia, but you believe it’s a nervous condition that’s “all in the head.” Or you acknowledge there might be something “wrong” with me, but you think I exaggerate my “condition.” I’m writing this letter to you because I want to clarify any incorrect assumptions you have consider FMS (fibromyalgia syndrome) and tell you how your assumptions make me feel.
When you believe this isn’t a “real” condition and those who claim to have FMS are just looking for attention:
I assure you, I and the estimated 3 to 6 percent of the world’s population with this condition (according to the National Fibromyalgia Association) didn’t 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. Then we’ll collectively talk ourselves into having painful joints and sharp pains that travel around our bodies and minds, numbing fatigue, spots that make us want to scream when touched and skin that at times feels sunburned for days.”
When you suggest all I really need is exercise, a better diet or a hobby:
Well, I used to travel all up and down the streets and hills by my house. That is until I could barely walk for days afterwards. The exercise didn’t prevent my increasing FMS flare-ups, so more exercise surely won’t be the cure.
And in regards to diet, trust me, I am aware I’ve put on an extra 30 pounds over the years since the fibromyalgia really kicked in. I’m 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. 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 hard to maintain the weight I’m at. I bet you dollars to donuts (no pun intended), I eat far less than you do and consume much healthier foods. Walk a mile in my shoes, my friend.
When you think I sound whiny or like a hypochondriac:
I rarely open up to people about my daily life with fibromyalgia. I assure you, I’m sharing a fraction of what it truly feels like to have FMS. I know people can get burned out by the unintentional negativity those of us with chronic illness can experience. 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 theater 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.
When you want to show love and support to 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 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 on called “chronic illness.”
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.