Divisions in the RA Community, Part II: Making Room for Us All
“People, I just want to say, you know, can we all get along? Can we get along?”
- Rodney King
A few weeks ago, I took to email and social media to ask about a certain undercurrent in the RA online community where people felt there wasn’t room for them. The stories I was told, from people feeling left out to being outright bullied and harassed, formed the basis for my first post on divisions in the RA community. In my second post, I will look whether we in the RA community can ever get along.
On a personal level, it boggles my mind that we are vicious towards each other. It makes me angry, makes me want to defend those who are bullied. And I am so sad that the division in this community result in people being further isolated.
We all have one overarching thing in common: RA. We understand each other on a more basic level than anyone else because we understand what RA feels like. Sometimes, we find a friendship beyond that, sometimes we don’t. And sometimes, we discover that we don’t actually like each other. Maybe it’s politics, maybe it’s that they’re a dog person and you’re a cat person. And maybe it’s how we approach living with our chronic illness.
We are all at different points in our journey with RA, traveling the path to coping in different ways. We all have a right to live with this disease in a way that makes sense to us, in a way that allows us to get through every day. My way isn’t yours, yours isn’t his, and that women over there does it in a completely different way.
And that’s okay.
What is not okay is when differing opinions, coping strategies, or dislike somehow persuades us that there is only one way — ours — to do this. That level of certainty has a tendency to bring out the dictator in human beings and that never ends well. Before you know it, someone’s saying mean things about someone else online, then other people join in and voila! It’s high school all over again, with a pack of mean girls (or guys) chasing you down the hallway.
You’d think we were too old for that. That we’d know better. That somehow, our mutual experience with a chronic illness that is objectively quite nasty, might have predisposed us towards kindness. But instead, we pressure others to conform, we judge based on hardly any information. We forget that there are real people on the other side of an online persona.
And it makes people leave. In my first post, both Kim and Brenda talked about leaving groups at a time when they needed support because they felt there wasn’t room for them. Only last week, a good friend of mine made the decision to leave the RA community because she feels her voice isn’t valued. Because she’s had too close a look at the nasty underbelly of our community.
How many more people have left? How many more voices have been silenced? How much poorer are we as a community because those voices are not part of our discussion?
It’s normal to get passionate about strong beliefs and want to share what you think. It’s also normal to not quite being able to see someone else’s point of view and having a vigorous debate about it. However, the Internet — and to a point, social media — is not known for nuance. The Internet allows for an immediacy, which so often allows us to support someone in the moment when they need it. The other side of the coin is that this immediacy also makes it easier to act on a snap judgment, posting a quick, barbed response, rather than taking the time for a thoughtful comment.
We are a diverse crowd, representing a multitude of experiences and opinions. The key to a happy coexistence is to respect each other without insisting that others have to navigate life with RA the way you do. Even better, we learn from each other, the different experiences lending a deeper, more nuanced tone to the community. We are an orchestra, made up of different instruments that sound and play differently. If we were all violins, it wouldn’t be nearly as interesting. And where would the trumpets go to find other trumpets?
Somewhat tortured analogy aside, what is wonderful about the RA online community is that we are not alone. If we don’t agree with someone’s approach, we don’t have to read their posts or be friends with them. We can find someone who resonates with us in our experience, because there is guaranteed to be someone just like us. Likely many someones. We are a big, sprawling community made up of smaller groups. And all of those groups can coexist happily, if only we will it.
There is room for all of us.