Is The RA Community Too Insular?
Let me start by saying that I am a big believer in supporting your own causes.
But sometimes I feel like there is a lot of competition in the RA community, which I don’t always think is productive.
There are various severities of RA that a patient can have. And that can change for each patient during the course of their illness.
I don’t like it when people start comparing “who has it worse.” I don’t think that’s a productive conversation to have. And I don’t think it gets us anywhere as a community.
I know I am lucky to be able to get up most mornings and go to work or school. But that doesn’t mean I don’t battle constant pain and fatigue. It doesn’t mean that I’m out swinging from branches like Tarzan, but good for me if I am.
There are people I know who struggle significantly with RA, and yet are still able to be involved in athletic pursuits that I couldn’t do, even when I was healthy.
And do I hate or resent those people for it? I would like to, but the answer is no. I don’t.
I know someone who I wasn’t even aware had RA. When I posted something on Facebook about someone who had died from RA, the person said that, that couldn’t possibly happen. That people don’t die from RA.
But they do.
It occurred to me that because this person didn’t know people could die from RA, and the fact that I didn’t even know she had RA, meant that her RA must be relatively under control. And good for her! I wish that were true in my case. But I know I am more controlled than others.
It’s all relative. But it creates a slippery slope. If I went to an in-person RA event and someone started accusing me of not having RA “seriously” enough, I would be totally insulted. And the same goes for online. And I think you would be insulted, too.
And in the end, where does that get us anyway?
There is a commercial currently on TV for an RA study that talks about remembering when a door knob was just a door knob, but now with RA it is so much more.
And every time the commercial comes on, I find myself totally agreeing with it. A door knob did use to just be a door knob. And now it’s a daily test of my joints.
I think sometimes, though, we have to get out of our own heads. We need to step out of the RA box.
How can we bridge the gap between those in other illness communities, when our own can sometimes feel so fractured?
For me, it helps to step away and try and understand what other chronically ill people are going through. Because a lot of the experience is the same across illnesses.
Every now and then, I need a reality check. I recently finished a diabetes book by a well-known diabetes blogger and as I read the book, I found myself thinking that a lot of the experience is the same, minus the insulin injections, testing blood sugar, etc.
We might not manage our diseases in the same way, but we all understand the time, energy, and money it takes to attempt to live well, or simply to just live, with a chronic illness.
I think that in terms of advocacy, I believe we could do more if we involved other patient groups. But would they join us?
Basically, it starts with us. It starts with us strengthening our own community before we reach out to others. I think the RA community is amazing and vibrant, and I’m so incredibly grateful for it, but I think we could do better in terms of including and representing people who live with RA to varying degrees.
Sometimes I think we forget that we aren’t the only ones out there dealing with disease. As someone with both lupus and RA, I have had to work to build a bridge between illness communities, and sometimes I feel like I don’t fit into either. And sometimes, I feel like I fit perfectly into both.
Am I in a wheelchair like some people with RA? No. But I do have a hard time with things that a lot of people with RA do, like doing buttons, opening jars, clasping my bra – many everyday activities that I once took for granted.
Ultimately, though, it shouldn’t matter. It shouldn’t matter whether you have RA and can run a marathon, or if you have RA and are wheelchair-bound. There’s an authenticity that gets lost in comparing suffering. There’s an element of it that makes me feel we are working against ourselves. There’s an element of it that diminishes our community a little bit.
How often you do experience an unexpected boost of energy?