As part of a Health Central project we’re working on, I was asked how I respond to people when they don’t believe that I’m sick. I’m happy to say that this has never happened to me when I tell people I have RA. Reactions range from shock and awe to empathy (from people who actually know what RA is) but never flat out rejection. I guess that’s pretty hard to say to someone’s face, right? But for the keyboard warriors of the world not so much.
A little over a year ago, I started this blog determined to share my RA journey openly and transparently with the patient community and beyond. Since then I have been blown away by not only the response from my readers but the opportunities it has afforded me. And, while I’m thankful for every single one of them, the more prominent I become in the patient community, the more haters I attract.
This week I rejected a blog comment that accused me of faking my illness… I’m not sure how one fakes having their hips replaced – I mean, I guess I could steal someone’s x-rays, but why would anyone do that? According to this one asshole reader, I was faking my #RheumAthlete persona to make up for the fact that I just wasn’t a very good athlete or runner otherwise. This comes just a few weeks after receiving some pretty negative backlash in response to my Live Bold Live Now story – all of which came directly from the RA community.
This shit hurts. There’s just no other way to put it. It’s so easy (and logical!) to say “Just ignore them, Anna. Reject/delete their comment, and ignore them.” I used to tell others to do the same, but once the hate starts getting thrown your way you realize how hard it is to do. It used to be that I’d just withdraw from social media for a bit, but now I find myself not even wanting to write on my blog.
I’ve been trying to write one post for so long that it’s no longer even topical (it was in response to something that happened to me earlier this month), but I can’t find a way to wrap it up because I’m so in my own head about my “tone” and how to say what I’m feeling. It’s like I can almost anticipate the hurtful comments that people will leave.
I don’t want to be this person – I really don’t. I don’t want to be someone who empowers others to take away my voice, but after awhile it just stops feeling worth it. I know that I have a lot to contribute to the RA community and beyond, but lately I just don’t want to. I’m lucky to have this incredible offline support system of friends and family that supports me 1,000%, and right now I’d much rather share my successes and failures and frustrations with them than with anyone else.
This Saturday I’m running my second ever Spartan race with my good friend Rob and Tony. Talk about supporters – these guys not only boosted me up and over walls during last year’s race but ran around the other side to help me climb down to minimize impact to my joints… I’m tearing up just knowing that I’ll have them by my side again Saturday morning. I’ve been working so hard to be race ready this time around that I’m worried I’ve actually over trained. It took me over an hour with my heating pad to make it out of bed this morning.
I’ve fought through the flu and a flare and big changes to my meds to get to this point. This is the sort of stuff I used to share here, but now I just don’t. I don’t even know if I’ll write a race recap after Saturday. I want to be able to share it, I really do. I want to continue to challenge the perception of what is possible with this disease, but I also want to be able to enjoy it while doing so. And for right now, anonymous internet trolls make that really hard to do.