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.
This is probably the best post I have read on the dual visible/invisible nature of rheumatoid arthritis. You are such a great write, thank you so much.
I’ve been using crutches almost full-time for the past half year. (A few months back I was able to walk without crutches for almost three weeks, and then even though I should use them more often around the house sometimes I don’t…) At the beginning it was a personal challenge to just pull out my crutches, and when I did I did so with the hope that they would return to the corner soon.
But now that they have become a part of who I am, I have accepted them as such. I recently upgraded from a more “medical” pair to a more “modern” pair, and I am happier than ever. This transition was anything but easy, though…even though I have been using crutches on and off for years, I always considered them to be temporary. Now I consider them to be permanent, with a few breaks here and there.
I transitioned from “invisible” to “visible” several years ago when I needed to start using a cane. Now I continue with the cane, and have a service dog. Soon it will be a walker and shortly thereafter it will be an electric wheelchair or scooter. At each transition it’s been a major adjustment. On the one hand, I’m so blessed to live in an age when such devices are available, but on the other hand I really don’t want to have to use them – I don’t want to have RA and fibro, I want to be energetic and healthy again. I want to be able to go hiking and caving and camping and take the grandkids to Epcot and Disneyworld and to the beach and the mountains and to Wash DC to go through all the monuments and museums. But I have pretty much accepted who and what and where I am at this stage of my life. I’m so grateful that the drugs we have now will delay the degeneration longer than the available drugs did back when my mother developed RA. Within 5 years she was in a wheelchair and 5 years after than she was in a nursing home. But I’m 5 years out from diagnosis and I’m doing fairly well.
Thanks to you and RA Guy both for sharing your stories. It’s got to be a mixed blessing as you said — you hate to have to take the step, but we do live in a truly miraculous age where as even a few decades ago we would have been housebound and dependent. As I am no doubt following the path you’ve already blazed, you have my admiration for your courage and my deep appreciation for sharing your insights.
On one hand you are da*ned if you do or da*mned if you don’t.
Ultimate Catch 22…:(…
I hate this Disease…
I feel old…
I have it but it does not have me…yet…;)…
One thing I do know is I am not ALONE on this journey.
Others know and understand and get it.
Thank-you so much for posting this.