As I cruise the various blogs about RA, I see a lot of discussion about “visible signs” and “use of assistive devices” along with the omnipresent “invisible disease” conversations. On one hand we tend to rail against those who don’t understand that even though we may not look sick, we have a chronic, debilitating, uncurable condition.
On the other hand, however, we tend to view those visible signs of the disease — crooked fingers, using a cane — as a sign of defeat, a sign of disability. We really don’t want our disease to become visible.
I think part of this is that as long we, ourselves, don’t see these visible signs, it’s easier to ignore the fact that we have the disease. Let’s face it, particularly in the US, the image is of youth, energy, and health. That, more so than a house with 2.5 kids and a dog, has become the American dream. Anything less makes us a second class citizen and most people with a disability in this country will tell you that’s exactly how they’re treated. And if you want to talk about being invisible, well, just have a conversation with someone who is physically challenged.
When I had my hip replaced last August, I had to use a walker and then a cane for a period of time. I can tell you that I was, indeed, treated very differently when I went out in public with these devices. However, for me it wasn’t a problem because, guess what, I was RECOVERING from surgery. I wasn’t disabled. I was merely temporarily inconvenienced and I would get better and put away the walker and cane — or perhaps donate them to someone less fortunate who needed them. Not me. This was TEMPORARY. (I must admit to using the “helpless me” on more than one occasion to my advantage during this period. And in Dallas, a handicapped parking sticker is worth its weight in gold. Enough said about that.)
The problem with RA is that you don’t recover. It’s not temporary. It doesn’t go away.
Assistive devices, as rheumatoid arthritis guy (www.rheumatoidarthritisguy.com) tells us, are not limitations, but empowering tools that let us more easily accomplish what we need to do. They help us maintain our independence and our dignity. The difference between my hip surgery and RA, is that once I start using a cane or other device, there is no road back. The invisible illness becomes a visible disability.
This is a transition that is as emotionally charged and personally defining as going through adolescence, or going through a divorce or death of a spouse. Suddenly you’re not who you were yesterday, and you’re not going to be that person ever again. You’ve added a new adjective to the way people describe you. The “D” word.
I’m not there yet. Even with medication, however, I expect to be there one day, hopefully years from now, but one day. I’ve had some practice since I’ve used assistive devices in the past, so I’ve lost my fear of using the handrail, picking up the cane. But there are many more who haven’t had that advantage. I would love to hear from others who have made that transition. What words of wisdom, humor, courage, vision can others share who have already made that journey and crossed that line? I would love to hear your stories — good and bad.
Can the transition be a metamorphosis into a butterfly — that moving more slowly gives us more of life? I’d love to know your experience — if you’ve made that transition. Or your concerns if you haven’t.
Thanks for checking in.