One of the things that I have tried to do since my body began to betray me (isn’t that way cooler than saying that I got sick?) is to find people experiencing the same illnesses.

Don’t get me wrong. I have some of the greatest, most supportive people in my life but… They don’t get it. Not really. They can empathize, sympathize, and try to relate it to something they’ve experienced.. but until you’ve woken up for the 300th day in a row, taking inventory of what hurts today before you move anything.. I think it would be hard to get it.

Without diving too much into it, I spent many years trying to be invisible in my own home because it was easier than being seen as a child. I would consider myself highly advanced in the art of empathy. And I didn’t get it.

Anyway, so I’ve looked to reddit mostly for people that get my symptoms, experience similar issues. But it’s weird, because you can kind of tell that, even though they experience some of the same things, that maybe they haven’t mastered the art of empathy because there is this… Almost gatekeepy vibe like.. umm you’re doing x illness wrong.

Someone will ask, who has had this experience and I respond because why yes, I do experience this thing. Almost immediately there’s someone there why what you’re doing to treat your illness doesn’t work or that whatever they’re experiencing is wayyyy worse for some reason or just generally being shitty about something you’ve disclosed about your own experience.

Like, dude. Okay. You are the best at having fibromyalgia. Can we stop dick waving now? Because I come to these communities to add value or find value in information posted there.

Everyone’s experiences vary. Everyone’s illness is different. Not every med is right for everyone and we all have different triggers, etc etc. I don’t really go to reddit for validation, because only I truly know what’s working for me.

I can’t imagine someone responding to post outlining personal experience with an “umm actually.. you should..” But it happens shockingly often. Oh this med doesn’t work for x thing. You should try this. You don’t truly have x symptoms if you’re able to… Or that’s terrible, you should be on x diet.

So I guess what I’m trying to say is…

Empathy. You’re doing it wrong.