What’s Been the Toughest Challenge Living With RA?
Surprisingly, the pain, stiffness, fatigue, and other symptoms aren’t always the worst part of living with RA. It’s often the stigma that stings the most.
Deen Allen’s RA pain is no joke, but with good treatment and sheer determination, he can hang. The stigma that comes with this often-debilitating chronic disease is different story. He’s got some words for the people who come at him with phrases like: “Oh, arthritis? I have that, too” and “But you don’t look sick.”
You have no idea what this disease is. OK, you have a touch of osteoarthritis, rheumatoid arthritis, it's not the same thing. My God.
Interviewer: What's been the toughest challenge living with RA?
Wow, so many. I think the toughest challenge, for me, has been realizing that I'm not Superman anymore. I had a really, really, really active life. I was in the military for eight years just jumping out of helicopters, climbing up rocks, just doing all of this other stuff. I would mountain bike like crazy. I would just do all this, like, really crazy outdoor stuff.
When I was younger, I thought when I get to a certain age, I can retire and I can continue to do this. Now I'm just like, no, buddy, you can't. You can't do it anymore. I think the most difficult thing was that the realization that I really can't do all of the things that I had envisioned that I would be able to do at this point in my life, I'm trying to hold back the emotions behind it. Because to this day, it's still sort of punches me in the core.
The other thing that I think is really challenging is just how people view me, because on the outside, I look good, I look great. Everything looks fine, but I deal with the curse, as they call it. On the inside is just a whole other piece.
Having the challenges of dealing with the expectations or just views or just dealing with people's views or how they view me and see me, that's difficult, too. That's really difficult.
I get the "your not sick" look and you're fine. That just drives me bananas. And the other one is like, oh, I have arthritis, too. I just I just want to look at people and as I'm getting older and realizing my filters really don't work as well before I would come up with a politically correct statement.
Now I'm just like, what the “bleep” are you talking about? You have no idea what this disease is. Yeah, OK, you have a touch of osteoarthritis. Rheumatoid arthritis, a rheumatoid disease is entirely different. There is a canyon. There's a gap. It's not the same thing. My God.
Interviewer: You just talked to me about how on a tough day, your body feels like it's being torn apart.
Interviewer: But when I asked you what the toughest challenge has been living with RA, you talked about stigma.
Interviewer: So what you're telling me is that the toughest thing that you have to deal with, with this condition, with RA, is people's perspectives, not the actual pain
No, no the pain... The pain I've really learned to deal with, the stigma is very different.