RD Blog Week: Day4: Community

I’m so honored to be participating in the 5th annual RD Blog week.  Today’s topic is:

Community – Our community is often hard on each other, even going as far as accusing others of not having RA when they can physically do more than others. How can we educate our own community on RA and how it affects each one of us differently.

I began using social media in 2008.  By 2009, I had found a bunch of people living with varying types of autoimmune arthritis.  I remember following one blogger, who has since passed away, and she could be very brash and negative at times, but I appreciated her candor.  That changed when she began ripping apart another blogger.  She claimed  this other blogger was not authentic because the their illness was clearly not as severe as hers was.  I remember her stating, “I just can’t relate to her and I bet not many other people can either.”  The thing was, I totally related to the other blogger because she was a lot like me.  At the time, we were both 30-something professionals who were struggling to work, date, and live with RA.  I had little in common with the other blogger who complained constantly and was genuinely negative.  I unfollowed that negative person immediately.  I wanted to post and chastise her for her negativity, but I didn’t.  A wise woman said to me one, ‘You can be invited to a lot of arguments in life, but it’s up to you to accept the invitation’.  I hold that advice dearly in terms of navigating the chronic life community.

I see (and hear) about a lot of patient advocates complaining about fellow advocates.  I’ve seen bullying, reputations smeared, and false allegations shared publicly.  Personally, I’ve even been accused of being discriminatory towards people on disability because I stated my greatest fear was becoming disabled and not being able to work.  I was expressing my genuine fear, not passing judgment.  I drafted about a dozen responses to the 2 negative comments I received and ended up deleting them all.  At the end of the day, I knew I wouldn’t be able to change their minds.  Engaging in a back and forth exchange with strangers/trolls wasn’t going to do me any good.  They had a right to their opinion and I have a right to express mine.  Having differing opinions is not a crime, it’s just a part of being a part of an online community.  When I see negativity or opinions I disagree with (and it’s not hurting anyone) I simply scroll on by or block the content.  I have enough to deal with in regards to my own health.  Dealing with online bullies or negative nancy(s) is not worth my time or precious energy.