Isabel Tyldesley
Freelance Writer. Senior Games Designer.
This Is What It’s Really Like to Have Fibromyalgia.
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 empathise 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 plans you want to do…
5 – …And understanding your limits.
…So to all of you I never make plans with – 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, people, it can make your anxiety go into overdrive
…And then, it’s feeling stupid 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 7km a day despite my legs begging otherwise. Sorry that 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 anaemic”.
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.
…It’s struggling to contribute to your Games Writing Internship (side-note: Check out 7TV: Pulp here!) because your brain can’t work quick enough.
14 – It’s being scared of your own future.
15 – Most importantly, it’s knowing you’re not alone.
It often feels you are when suffering from 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.
Invisible or less obvious conditions are harder to live with so congrats for writing gutsy posts like this
I won’t pry for details, I fear it is my want to not feel isolated merely reaching wrongly so won’t ask but you sound like you have if covered, so ‘survive, go home and relax’ as I tell myself
The world my never understand but as long as you have a great inner circle who do… Bleep the rest of humanity and it’s small mindedness!!
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