RD Blog Week: Day4: Community

FInal-2019-JPGH-badge-marked-RD-not-RAI’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.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

One thought on “RD Blog Week: Day4: Community

  1. No doubt people will always figure out some way to complain and down grade anyone or thing they do not understand. The same is true of people who do not wish to work as hard. I had one spread a nasty rumor about me once. I said you are right, it is my fault I have diabetes, but dont tell my mother, she will be disappointed it was not her fault. I do not recall talking to or seeing them again. Just saying.

    Liked by 1 person

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