RA and Being Seen: What Does It Mean to You?
What does being ‘seen’ or understood mean to you when it comes to living with RA? Let's talk about it!
That's a darn good question,. It depends on whether I am dealing with a health care provider who is absolutely clueless about RA and the medications that I take or if its a friend or family member who raises an eyebrow and looks exasperated when I say "Nope, I'm not doing that today."
I wish some people in my life understood the effort it takes to move through pain every day. And in spite of that, I still find the energy and enthusiasm to be interested in everything that is going on in their life.
Maybe they could ask me "How are you doing today?" I promise that I won't complain for hours. I won't get angry. Or cry. But just that question lets me know that they see me and how hard I work to be present for them., you encourage all of us here. Thank you! Like Chick-fil-A, it's my pleasure 💜 I hope you're doing well! -Latoya (Team Member)
Well, I suppose the main thing for me is I wish RA was called something else, because I can't count the number of times people have said "Oh, I have that too!" or "My mom had that." And of course they're talking about "regular" arthritis.
I've developed my own script to explain, "no, it's an autoimmune disease, more like Lupus." It's not that I want everyone to feel sorry for me, but I would like for people to better understand what my challenges are (i.e. "see me").
Luckily I have great friends and family, and a good supportive job (I work in healthcare). They are understanding when I just can't do it. I also have good health insurance, and I like my Rheumatologist quite a bit. But I think the vast majority of Americans don't even know what this is (I didn't until I was diagnosed with it! LOL).
I'm doing pretty good right now (not well, per se, but pretty good especially compared to my initial flare). I don't have a lot to complain about given the struggles of folks not as lucky as I am. But still, it sucks! 😀 It would be nice if the average person had more information on what this is and what it does to people.I always say that rheumatoid arthritis had the worst marketing team in the world when they named the thing. "Let's call it something everyone thinks is nothing, that will make people REALLY take it seriously!" A new trend is some people have taken to calling it "rheumatoid disease," RD, in order to drive the point home that it's not even close to the same thing retired baseball players get in their 80s! You are not alone! Keep on keepin' on, DPM I totally get that. It’s annoying when people mix up RA with regular arthritis. But it sounds like you’ve got some great support around you, which really helps! Hopefully, more people will start understanding what RA actually is so people like you can feel more seen but most importantly, understood. And sidenote, it’s okay to say it sucks sometimes. Nobody expects you to have it all together all the time! -Latoya (Team Member)
