Last 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.
Think 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
- A Rheum Full of Contradictions
- “You Look Fine” – a Wall of Confusion Surrounding Rheumatoid Disease
- If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease
- 3 Myths about RA that are Rheumatoid Arthritis Facts
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.
- Lipstick & Luck: Feeling Fabulous with Rheumatoid Autoimmune Disease
- “Fine Thanks, and You?” and 5 More Stupid Things I Say
- Living with (RA) Rheum Disease Is Already Multitasking