When Our Strength Works Against Us

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NASCAR window netLast month, I called your attention to an article that truthfully presented the reality of Rheumatoid Disease, asking you to thank the site – and many of you commented there. One exchange reminded me of many I’ve seen over the years. Carly made a tricky point that seems like a catch-22 (no-win situation). Norma’s response seems right to me, and similar to what I’ve said thousands of times.

“I really hate to write such a negative post, and feel I’d be misrepresenting myself if I didn’t add that I am actually a very positive person. Although this has taken quite a bit of my spunk, I still do everything I can to enjoy life, I am still strong, I am still generally a happy person, I am still grateful for the things I have and appreciate life. But honestly, I believe this adds to the lack of support I receive. On top of looking fine, I don’t appear to be coming apart at the seams and I hide my pain the best I can, so it’s hard for anyone to understand how much I suffer. Thank you for giving me a voice.”
Norma Martinez: “Carly, I’m learning that a lot of us with RA are amazingly happy and positive people ..why spend our lives miserable, on top of everything else?! But, we need to be able to vent, complain and cry every once in a while, in order to keep smiling and living our lives as best as we can ..it makes it easier when there are others who truly understand.. One day at a time, painful step, by painful step.. :) Peace..”

Kyle Busch m&m carThink about this: As we fight to “hide the pain the best we can,” and press on to do “everything we can to enjoy life,” Carly is right that “it’s hard for anyone to understand how much we suffer” and “it adds to the lack of support.”In the privacy of my own house, I call the façade of RA, “The LIE.” It’s one more irony of this disease (see list of more, below).

Maybe one problem is the grace with which we fight Rheumatoid disease assures the world that it’s not that bad. The high pain tolerance we usually develop, along with our fighting spirit to overcome the disease and the stoic way most of us hide our struggles all contribute to the idea that RA is no big deal.

Is there a solution?

I want to see a cure and I think that would pretty much solve it. Do we think people would still waste money on studies to prove RA doesn’t hurt that bad? Or make a living writing silly articles that accuse patients of hypochondriasis? No, a cure would pretty much put that to rest.

Meanwhile… here are 3 more ideas while we fight for the cure.

1) Paint a clear picture of disease activity for our own doctors. This might mean taking the gloves off, even though it’s hard. I’m not all the way there yet.

2) Find at least one person that you can be totally honest with about how constant or bad it is. Tell them you’ll ask for help when you really need it and while you don’t want any pity, you need someone to know.

3) Plan to participate in the Rheumatoid Patient Foundation’s upcoming survey with Mayo Clinic to be sure your voice is heard. Together, we will be better understood.

How do you think we can help the world to get it?

More on the ironies of Rheumatoid disease

Postblog: You can stay up to date with current RPF events by subscribing to the weekly RPF blog (click here) and the new quarterly newsletter The Shield (click here). To join the RPF with a personal, professional, or corporate membership, click here.

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Kelly Young. All rights reserved.

This entry was posted on Wednesday, March 20th, 2013 at 10:55 am and is filed under RA Education. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

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