Share your experience with fibromyalgia and connect with people who support you.
To honor National Fibromyalgia Awareness Day on May 12, I’ve been thinking about what aspects of the condition I could bring awareness to. What don’t people already know? The reality of fibromyalgia is not only that people tend to not know much about it unless they have it, but there are many who don’t even believe the condition is real.
I’ll be taking my cue from the National Fibromyalgia & Chronic Pain Association’s theme, “Your Voice Matters.” I’m using this platform to voice a few opinions that are rarely spoken but need to be said.
“It’s fake. It’s invisible. It’s a B.S. excuse for being lazy.”
Imagine your body is on fire. Imagine every time you take a step, it feels like the ground beneath you is littered with Legos. Legos, people! Imagine if the mere act of walking from your car to your desk caused such exhaustion, you could sleep for a day. Sounds pretty terrible, right?
Now add in that there may be no way to “prove” what you are feeling is real. Imagine if every single test has come back negative (and you’ve taken hundreds of tests). Imagine that amid the fatigue, chronic pain and hypersensitivity, as you try to convince yourself to press on, you overhear people talking about how they are “over your fibro” and how much you complain about your pain. Imagine hearing that all of your suffering is something you made up in your head.
If you know someone with fibro and want to understand them better, here are 25 things people without fibromyalgia should know about people with fibromyalgia. Are you a fibro warrior? Share this post to spread awareness and understanding.
1. Give gentle hugs please, my skin hurts.
2. I can sleep all day and still feel like I just ran a marathon.
3. When I’m tired, let me sleep.
4. If I cancel my plans with you, don’t be mad. I already feel bad.
5. If I went out last night, I need a day to recover. It’s OK, it was worth it.
6. When I’m in a flare, leave me alone in a dark room (but check in). It makes me feel good.
7. Every morning is a tough morning.
8. Your friend with fibro who has “no pain” doesn’t make me feel any better.
9. “You should exercise.” My work day is my exercise.
10. Certain foods make me flare up; for example, peppers of any kind, sugar and caffeine.
11. Yes, diet matters but in flare mode, all bets are off.
12. Because of fibro, I get to spend more time with my husband.
13. Bright lights, loud noise and too many smells overload my senses and make me nauseous.
14. My day, week and month are carefully planned to accommodate my fibro.
15. Yes, my face is swollen. No, I didn’t gain five pounds overnight (I’m flared!).
16. I have three different sizes of clothes in my closet to accommodate flare vs. non-flare days.
17. I play hide-and-go-seek with the elements: too cold, too rainy, too hot, too much sun.
18. To you, car rides may be joy rides. To me, they’re a painful roller coaster ride.
19. Going to the doctor makes me mad. It’s a reminder of my condition.
20. Some days it’s OK to let my fibro win. It reminds me that this is a marathon, not a sprint.
21. I can get moody. You would, too, if you were in pain all the time. Please be patient with me.
22. I can tell your mood as soon you walk in the room because my fibro/spidey-senses are tingling.
23. There are no no-pain days, but my low-pain days are my happy days.
24. Because of fibro, the mandated down time gives me the opportunity to write this blog, and I’m grateful.
25. Because of fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.