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15 Things Fibromyalgia Really Is

When I tell people I have fibromyalgia, a lot of people stare blankly, or go “I’m so sorry,” or, “I can’t even imagine.” Sometimes, it’s a combination of all three. Of course, it’s pretty difficult to understand what it’s like to have something you don’t have. I’m hoping that, after reading this, you’ll empathize somewhat.

This is what it’s really like to have fibromyalgia.

1. To start with the obvious, it’s chronic pain.

It’s reaching to pick something up next to you and pulling a muscle instead. It’s constant leg cramp and continuing to walk, despite it.

2. It’s chronic fatigue.

And that’s not, “it’s been a long day and I want a nap,” but more like: “It’s been a long 19 years and I never want to wake up.”

3. It’s knowing you shouldn’t do something and doing it anyway.

And knowing you’re being judged for it because people don’t understand how you can complain about pain and still get up and do life anyway. They think you’re lying, but I can promise you: Yes, it hurts to walk. Yes, it hurts to write. Yes, I do it anyway.

4. It’s saying no to the plans you want to do…

5.  …And understanding your limits.

So, to all of you with whom I never make plans — I’m sorry. I love you. Please, be patient.

6. It’s sensory overload.

If there’s too much happening — whether that’s noise, smell or people — it can make your anxiety go into overdrive. And then, it’s feeling silly for being anxious because the TV is on, and someone else is talking on the phone, and your dog is nudging you for a cuddle. (I’m sorry, Molly, you’re super cute and I adore you.)

7. It’s needing to pee every three hours.

8. It’s giving up on hobbies.

Because you have to focus all your energy into work and living.

9. It’s giving up on aspirations.

As a kid, I wanted to be an athlete.

10. It’s being told you’re lazy.

By strangers, friends, doctors. I walk around 7 kilometers a day despite my legs begging otherwise. Sorry I don’t run a daily marathon on top of that.

11. It’s mood swings.

12. It’s being ignored by doctors.

Oh boy; the many, many years I spent being told I was just “mildly anemic.”

13. It’s fibro fog.

Which is a whole issue on its own and deserves a separate post. It’s not being able to keep up in a conversation. It’s forgetting everyday things.

14. It’s being scared of your own future.

15. And most importantly, it’s knowing you’re not alone.

It often feels like you are when living with any chronic illness, but you’re not. There’s an entire community of people around you who understand. Reach out to one another. You are never alone.

A version of this article was previously published on the author’s blog.

Photo by Karolina Skiścim on Unsplash