Shake it off?

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.


9 thoughts on “Shake it off?

  1. Rick Phillips says:

    Wait, you can’t fake a hip replacement? Dam, I think that might have been my issue when I complained to my doctor about my hip hurting in 2011. I just thought I was such a good actor he replaced it sort of one a whim? I guess I better rethink my acting skills.

    I am sorry you got a hater in your comments. No one deserves that and for the record, no one fakes a hip replacement. Let alone more than one. Those dudes hurt.

    Whoever made such a comment is an IDGIT. That is the name for a supreme idiot where I grew up.

    and

    pssst: (RABlog Week will be back in September)

    1. Thanks for your humor, Rick – gave me a good smile yesterday! And don’t worry – I’ll be back for RA Blog Week in September 🙂

  2. Cathy says:

    So sorry to hear this. I once had someone bullying me on Twitter. It’s hurtful. Knowing how much to share and when to back away is always a struggle. The one thing I try to remember is how I felt 12 years ago when I searched the Internet for amazing stories like yours, mine, and so many others I find today but found nothing then. I felt doomed. Our stories of living life with RA are helping others, often the quiet ones who read and know they will be okay. I assume the haters have not realized their potential and feel the need to strike out. Make the decision that’s right for you. But personally, I’d love to hear more.

    1. Thanks so much for reading and for your thoughtful comment, Cathy. I’m sorry you went through bullying on Twitter too. It’s sad that those who haven’t realized their full potential want to steal joy from others. Just knowing that sharing my story means something to you and others gives me the inspiration I need to continue writing. Not only do I need a break at times, the issue of bullying in our community needs to be addressed and I feel better having said my peace. Thank you again and I hope you have an awesome weekend!

  3. jwilliamscc says:

    I’m sorry to hear this. No matter what you chose going forward please know your blog and social media presence were a shelter in my storm when I was diagnosed. It was such a comfort to see someone else that could keep going when everything said stop.

    1. I’m trying to find the words to respond, but I’m humbled and overwhelmed. Thank you. Just thank you.

  4. I’m here for you. You’re not alone! Thank you for sharing your heart and raising awareness for others — even amidst the naive little humans behind the computer. ✌🏻️💜😘

  5. Lene says:

    You’re absolutely right. It’s easy to say shake it off and so hard to do. I don’t know why the rare Internet troll has so much more weight than all the people in the online community who offer us support and love, but there it is. Letting go of the effects of bullying is a very conscious effort to minimize its weight and focus only on the positive. You already know how — it’s how you live with this disease. Use that skill to negate the idiots.

  6. Bless you and I wish that I could take your pain away. I’d stomp the crap out of the trolls if I could but of course that is not the thing to do. I say delete those comments and block them from where ever the hate filled comments are made. Those kind of folks have led a charmed life and have no idea what pain is about. They’ll reap what they sow some day.

    Best regards,
    Yvonne

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