The RA Fraud
Sometimes I feel like a fraud.
Like this morning, for instance. I was filling out one of those online RA self-assessment questionnaires, the type that ask questions like “In the past week, how hard was it for you to get out of bed?” The answers range from “Not hard at all” to “Terribly hard.”
My answer was “A little bit hard.” The other questions and answers came out about the same. Getting dressed and tying my shoes was “A little bit hard.” Could I walk a kilometer or mile? Yes, but “with difficulty.” When it asked how hard it would be for me to carry a basketful of laundry up a flight of stairs, I finally had to draw the line--I just can’t do that. My hands are too sore and tender, and the very thought of carrying a full laundry basket anywhere, let alone up a flight of stairs, makes me cringe and go all trembly around the mouth.
But my answer wasn’t entirely truthful. Because, in fact, I could do it if I had to. And I have done it many, many times when my pain from rheumatoid disease was far worse than it is today. My laundry had to be done and there was no one else to do it for me. To this day I can’t remember those Bad Old Days without becoming frightened that they might one day return.
Except for that one, all my self-assessment answers were fairly positive this morning. I may have RD, but the medicines I’m taking seem to be keeping it under decent control. I’m in pain every day, but its intensity varies. Most of the time it’s moderate, say, a “five” on a doctor’s office pain scale. That means that while the pain might affect what I can do, how much I can do, and for how long I can do it, there really isn’t much that I just can’t do.
And that’s why I sometimes feel like a fraud, particularly when I’m interacting via social media, email, and in person with others who share this nasty autoimmune disease with me.
RD impacts many of them profoundly. I talk to people every day, via Twitter, who’re coping with devastating pain and disability. Many of them can barely get out of bed in the morning, let alone tie their shoes, carry laundry, or walk a freaking kilometer. In contrast, while I’m usually fairly stiff upon rising in the morning, I don’t have much trouble doing it. Sure, I lurch around like a zombie for an hour or so, and usually wince and cuss under my breath when I lift the pot to pour my coffee, but really, it’s nothing compared to what others go through. My heart breaks for them as I read their tweets. I try to express my understanding and care, and I always wish them well, but I know my words can’t do much for them.
Yet, I also know how much I’d have liked to read or hear those encouraging, understanding words myself, back when I was in such awful shape and carrying heavy baskets of laundry up and down multiple flights of stairs (among other things, like working full time). And, today, when my own pain is bad enough that I tweet about it, I know how words like that from others who totally comprehend my pain comfort me. They can’t take it away, but they soothe my soul and lift my spirits.
The pain, stiffness, fatigue, and disability of RD impacts each of us differently--and we all perceive and cope with it differently, as well. When I feel like an RD fraud, like I did this morning, I have to remind myself of this. I also have to remind myself that while this week I didn’t have much trouble living with my disease, next week may be another story entirely. Over the last year, my RD has doubled in intensity, and I’m experiencing symptoms now, like fatigue, that I never had much trouble with in the past. It’s unpredictable. It’s fickle. It makes each and every one of us feel like frauds one day and totally legit the next.
I’ll keep doing that self-assessment quiz for research, but I’m not going to allow it to make me question the sometimes grim reality of my daily life with RD any more.
I have laundry to do.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?