Wearing My Flare on My Sleeve
I never asked for RA. I didn’t do anything to cause it, and I certainly don’t deserve it. But I have it anyway, and I’ve come to accept that fact and get on with my life. In a way, I’m lucky. None of my joints are distorted or deformed, even though I’ve had RA for almost 28 years. The disease may be wreaking havoc inside me, but you’d never know it by looking at me.
Except … when I wear it on my sleeve.
When I’m flaring, sometimes I need to use a mobility aid, like a cane or crutches. Sometimes I might need to wear a splint on my hand, or a brace on my elbow. Maybe my RA is making me feel exhausted enough, or I’m hurting badly enough, to choose to park in the handicap space at the store. I have the blue placard that gives me legal access to it, and I have a real disability.
When I’m flaring, using one of these mobility/occupational tools shows me up for being ill rather than healthy. And there’ve been times, I’ll admit, when I’ve been embarrassed using them. My compression gloves, for instance, make me feel dorky if I wear them in public, particularly on warm, sunny days. And when I’ve parked in a handicap spot in a crowded parking lot and walked away from my car normally, the looks I’ve gotten should have melted me into a puddle in my shoes.
People wouldn’t look at me like that if my foot was in a cast and I was using crutches to walk, or if I was using a wheelchair. I don’t like it when this happens, but I try to ignore them. I’ve no reason to hide my RA. Researchers don’t know yet what causes it or how to cure it, and I’ve no reason to be ashamed of having it.
RA just is.
Compression gloves often soothe my RA hands enough that I can run errands. With them, I can take things off store shelves to put in my basket. I can fumble my wallet open. I can carry bags into my house. Most of the time I can do those things without my gloves, but I’d hurt a lot more.
If my right knee is hurting me enough that I can’t walk with my usual careless confidence, I’ll use my cane. It takes part of the strain off that knee and helps me walk. It also makes me safer; a wrong step on that bad knee could make me fall. Does wearing my fingerless gloves or using the handicap space make me stick out? Probably. But if someone brings it up, I’ll tell them why I need it. Maybe that person will understand RA better after we talk. Maybe she’ll think before she judges the next person she sees.
I’m glad I can use mobility and other types of aids to help me cope with my RA. My cane can mean the difference between staying home and meeting my responsibilities. It allows me to be active and independent.
All these things—a splint, or a wheelchair, or compression gloves, or crutches—are just tools. So is the blue placard I keep in my purse in case I need to park in a handicap parking space. I’m not embarrassed to use it if I need to, even though there are times when I look perfectly healthy. I only use it when walking longer than I absolutely must will cause me more pain and exhaustion than I can deal with.
There are many great tools for RA. I have eating utensils with thick handles, made especially for when my knuckles are flared and it hurts too much to grasp a conventional fork and knife. They look funny, but so what? I have a little tool that helps me button my shirt and one that helps me put my socks on my feet when my hands are bad. Some of my tools are visible and some are not, but I’m not ashamed to use any of them.
We aren’t embarrassed to use a hoe to help us plant seedlings, or to use a basket to carry fresh vegetables in from the garden. We drive cars or ride bikes instead of walk. Those things are only tools, just like mobility scooters, shower chairs, and rubber jar openers. Use them with pride and defiance. You may have RA, but you can stay active, mobile, and independent in spite of it.
Are you reluctant to use visible RA aids in public?
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?