I’ve got a lot of friends who live with rheumatoid arthritis (RA), and their experiences run the gamut. There’s me—with a body warped enough by RA that I have to use a wheelchair—and then there’s my friend Emil, who appears perfectly healthy and has been known to try out new exercise programs just for kicks. My RA community includes the wrecked, the not-so wrecked, and thanks to pretty amazing medications, those who are in remission. Most days, we pop in on the RAHealthCentral Facebook page to support each other with virtual high fives for mini triumphs over the condition, or to share the occasional rant about how RA spoiled what was otherwise shaping up to be a pretty good week. This all helps us. But there are days when I read something like this in response to someone sharing a story of their being well enough to do yoga, jog, or dance: “There’s no way he has RA.”
That’s a mild paraphrase. It’s sometimes more negative or even downright aggressive. And here’s the thing: Contrary to the sticks-and-stones saying, words can actually hurt. It also damages the RA community as a whole when own people scrutinize our behavior, leaving us feeling dismissed and excluded from the support we all need.
I know we can do better. We need to because no one else understands us as well as we understand each other. We all have RA in common. We know what it’s like to feel the throb of your heart in your wrist as the pain pulses within. We know the sensation of walking on knives, when RA is feasting on your ankles and toes. We know what it’s like to cry yourself to sleep and then cry yourself awake in the morning amid an excruciating flare. We know what it’s like to have to cancel plans, yet again. To feel like a burden. And to worry endlessly.
All of us have stories of being judged by those who don’t understand what it’s like to live with a chronic illness. There is the censure that can escalate into yelling and verbal abuse from overzealous citizens if you don’t “appear to need” that accessible parking spot you’re using. There is the micro-aggression of someone equating their occasional twinge of osteoarthritis in a knee with what you have, an autoimmune disease. This has happened to me so often that my polite smile now looks more like gritted teeth. The outside world offers us plenty of criticism, but when those judgements come from a place you thought was safe—the RA community—it can be particularly devastating. I have spoken to so many people who have felt their experiences dismissed, their RA doubted, and their right to belong denied. And all simply because they have what all of us living with RA dream of: Early enough diagnosis, good response to treatment, and low disease activity, even remission. In short, the opinion is that if you are well, it’s not fair.
It’s not unreasonable to want to feel better. I think people with RA who behave unkindly to others living with a seemingly “better” experience lash out because they have a burning desire to be able to do what everyone else can. And I get it. I really do. When I see someone effortlessly twisting their body into a pretzel at yoga or running another 5K, somewhere deep inside, in my secret heart, a bolt of envy burns and leaves behind a trail of heartache. It’s safe to admit that here, isn’t it? These amazing people look perfectly normal. And while I am forever grateful for the new medications that are changing RA to an invisible illness, they didn’t come along soon enough to help my body. And I’m not alone. It’s hard to live with limitations. It’s heartbreaking to be unable when life looks effortless for others. Sometimes we lash out, because anger is easier, less soul-destroying than the grief tsunami that washes over you when the loss of who you were is staring you right in the face.
But that’s where my understanding stops. Because anger and grief does not make it OK to attack a person who’s just living their life the best way they can. Especially when that person has dared to share something that makes them vulnerable—that they have a chronic illness. There are so few of us out here and we all need understanding and empathy.
While we may not be able to control that burning flash of emotion, we can use it constructively. It can help us be aware of the grief we hold inside us, to process it, and to move on. Every time it happens, we can make the decision to turn it around, to quite deliberately use it as a trigger for kindness.
These days, whenever I see a picture of someone with RA who is able to be athletic, I rejoice (sometimes out loud and in public). I see those in our community who are much more able as a symbol of hope. Whenever I see someone who now has the ability to run, climb mountains, have children, and live so close to healthy, I see a miracle—the miracle of treatments that work. And it shows the potential for more treatments that will help all of us and maybe one day cure RA for good.
Together, we can give each other a true understanding of what it actually feels like to have RA, and the support to get through it. Together, we can show the world what RA does—the good, bad, and the ugly—and also all that is possible.