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When I Feel Guilty About Discussing My Fibromyalgia Since It Isn't Life-Threatening

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I have fibromyalgia. There’s no doubt about that. And I don’t really care about the naysayers, the people who say it’s not a real disorder, the doctors who say it’s not real.

I know it’s real.

And still, I feel guilty a lot of the time. Too guilty to tell people about it — about having fibromyalgia, an invisible pain condition. Because to me, it’s just not in the same category as other illnesses. Fibromyalgia isn’t fatal. It’s not an ailment that will require lifesaving treatment.

I will likely live to a ripe old age with this illness, this pain, the brain fog and feeling lousy, especially since longevity runs in my family. I don’t believe it will be the fibro that will get me in the end, but something else: a bum ticker, a brain that turns to mush, a strange bump that starts out small — anything but what I have, which is fibro.

And since fibromyalgia isn’t going to kill me, it somehow doesn’t seem right I’d give it airtime. It feels impolite or selfish to even mention it to anyone outside the circle of my family. It feels too small and insignificant to disclose.

So I don’t talk about it. Even when I need to talk about it. Like when my neighbor knocks on the door and for the nth time, I’m in my bathrobe. “Are you sick?” she asks.

“Just lazy,” I say, and watch her barely hide her disapproval from my eyes, she of the treadmill and  power walk, the one who is physically fit.

I don’t tell her how most days I can’t get dressed because it hurts because of the crushing fatigue. Will she think I’m a kvetch, a weirdo, for claiming illness for something that may sound to her like a made-up disease? Will she see me as an utter narcissist to complain when there are people dying of breast cancer and ALS?

Somehow, being thought of as lazy, a slattern, doesn’t seem half so bad or selfish. Like I’m trying to steal sympathy away from the people who are dying from what they have, while I simply don’t feel well enough to get dressed today or most days.

And then there is work. I work hard at what I do. I believe in the mission of my workplace. But I confess I  fear telling my co-workers at Kars4Kids, where everything is about the kids, about my mostly adult aches and pains. How would this information affect my standing at work where at 55, I am one of the oldest employees?

Would I be seen as a slacker? On a bad day, if I failed to produce, would I be seen as a slacker? Not a team player? A kvetch?

Worse yet, could I be made redundant, that fancy word for “fired?”

So I say nothing and push myself, even on the worst days. I push so hard I do more than what two or three writers could accomplish in the same timeframe. I test myself, in a weird game of limbo, setting the bar lower each time, to see if I can just squeak in, to see if I can make my body do the impossible and get me through one more day at work.

They never suspect that in the mornings, my feet hurt so bad I cry when I stand on my own two feet, just out of bed for the day. They see me as capable, a work horse. 

My fibromyalgia is nonexistent to them, an invisible shadow they just can’t see.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 7, 2016
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