Tuesday, July 5, 2011

RA Loves a Crowd - Online Communities

I frequent a Facebook fan page with 9000 members - what we all have in common is living with Rheumatoid Arthritis. It has been a phenomenal source of information, support, and a safe place to address my fears, questions and feelings about dealing with an incurable chronic disease. I have made friends there ... real, reliable, warm friendships with people I've never met. This is a wonder to me, and a source of great comfort in the wild & wooly world of living with chronic illness.

Today, a new member of the community made some comments that were pretty blunt & somewhat misguided. The responses can be divided into two general categories - 1) I disagree, but I can see where you're coming from; 2) how dare you come here and question how we do things.

I was uncomfortable with her comments. I was uncomfortable with many of the responses. I tried to decide what caused my discomfort, and it was this:

We forgot there for a minute why we were there. The original poster and some of the responders forgot for a minute that there are 9000 people in this group, with 9000 stories and experiences (or lack of experience in this case.) The community has a huge cast of characters from all over the world, a few being:

The OneUps - I've had RA longer (my RA is worse, my labs are more extreme, I have more joints affected, I take more meds.) Sometimes this information is relevant to a post; sometimes it isn't. These are a few folks who don't let irrelevance keep them from sharing their statistics.

The Role Models - I have mild RA (I'm in remission, I have better function, I'm a vegetarian or runner, swimmer, take this supplement, have a positive attitude) and if you would only be just like me, you'd have milder RA too.

The Snake Oil Salesmen - I have a book, website, method, diet, to sell you & cure your RA.

The Homesteaders - I have been a member of this community longer, so...listen...to...me.

The Jokers - I make light of RA to try to cheer the group up. It's possible this could annoy some people who are having a bad RA day (week, month..)

The Sybils - I may be any or all of the above, all in the same day (I think I probably fit in here.)

What's great about this community is that, even when we're having a little pissing contest about who is in charge, we almost never forget one essential fact - RA doesn't care who you are, how advanced your disease is, how you feel today, whether you live a perfect lifestyle, or how long you've been diagnosed. RA can strike you down in a heartbeat; you can go to bed feeling well and literally be unable to get out of bed the next morning. You can be enjoying positive results from your medication cocktail today, and next week it stops working and you have to start all over. You can be suffering your very first disease flare or your 100th. RA can cause joint destruction within the first two years of the disease or you can have it for 50 years with no deformities. You can teach university-level macrobiology, be retired, an IT professional or a stay-at-home mom. RA doesn't care.

In my experience, when the time comes that you need information, support and encouragement, just like RA, the characters in the community don't care who you are or what your story is. I sure hope we don't let personalities make us forget that.

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