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Is The RA Community Too Insular?

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence 'rick' Phillips moderator
    4 years ago

    I am more in touch with the diabetes community. So I cna not say for certain this is true or not about the RA community. But, assuming ti is and for the most part all communities are these days, I hope artificial barriers can be overcome. We must strengthen each other. After all if we don’t who will? No one, and being alone is not a successful ideology when it comes to chronic disease.

  • Leslie Rott moderator author
    4 years ago

    Thanks for your comment Lawrence. I am assuming you have RA along with diabetes? What do you think are the differences between the two communities? Just curious!

  • Wendi Morgan
    5 years ago

    Amen sister! My sentiments exactly!

  • Debbie Dombrowski
    5 years ago

    Great article! I totally get it. I’m very lucky that my RA is sort of in control. Do I get frustrated when I can’t do simple stuff?-Sure. Do I also feel frustrated when I need to think ahead about my life, or even going to the store?- oh Yeah! But I really don’t want to sit here comparing my pain to anyone else’s. I’m an individual with my own priorities and I probably look at things differently than the next person.

  • rhonda
    5 years ago

    Well said. Great article. We should all remember we are in the same boat maybe some are leaking worse than others but its the same boat regardless of the disease we are fighting.

  • Leslie Rott moderator author
    5 years ago

    Thank you, Rhonda!

  • Kelly Mack moderator
    5 years ago

    Great article! Thanks for being so eloquent and reminding us that we must come together as a community to find strength and support.

  • Leslie Rott moderator author
    5 years ago

    Thanks Kelly, for your comment.

  • Jane Burbach
    5 years ago

    Yes, we have all had our challenges with RA and it is not at all productive to judge each other in what is already considered by some to be an invisible disease.

    I can work now but there have been significant periods in my life when I couldn’t. Including the period that finally led to diagnosis.

    I am not better than anyone because I can work. You are not sicker than me because you cannot. We all have our challenges.

  • Leslie Rott moderator author
    5 years ago

    Jane, I completely agree.

  • Julie
    5 years ago

    The other morning I replyed to a post that said you should be lucky you’re pain isn’t as bad as others. Something like that. And I said I found it very insulting. To get in a pain war is crazy. And to start judging people without even knowing them or there story. I have had RA for 25 years. I still waitress, take care of my grandson, and a sick mother. I have never stayed in bed or called in sick at work. There are some nights when I come home from work that I’m so sore and tired that I have been known to cry. But every morning I still get up(slowly) make my way down stairs. I am flared everywhere. And my husband has been arthritis proofing my house. So I get very mad at this whole pain thing. I am proud of the way I have taught my daughters to not give up and to keep fighting everyday. Thank you for starting my day in a positive way. Keep fighting the good fight

  • Leslie Rott moderator author
    5 years ago

    Julie, You’re welcome! Thanks for reading!

  • margo clinkenbeard
    5 years ago

    Great article and so right on! lets support each other not compare!! Thanks for posting.

  • Leslie Rott moderator author
    5 years ago

    Thanks Margo for your comment.

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