I’ve compared having rheumatoid arthritis (RA) to feeling like a human eggshell. This painful disease leaves one feeling vulnerable, as the subtle pressures of the world, such as a receiving a hug or going over a speed bump, can send jolts of discomfort through inflamed joints. During a flare, it can feel like one’s body might break apart after being jostled in a crowd or enduring the stops and starts of a subway train. Everyday activities can inspire dread when one’s body is in pain.
In conjunction with this vulnerability is the body’s reaction to impending pressure. Knowing that something as simple as a firm handshake can ramp up the level of pain I’m experiencing, I’ve noticed that I steel myself for these encounters. My body goes rigid and recoils slightly; it flinches. I’ve come to call this the RA Flinch.
The RA Flinch strikes most often when my young children are near. When I’m in a flare, I remind them that my body can’t be bumped or bounced because it hurts so much. They’ve come to develop a certain level of care around me, but their compassion doesn’t completely quell their boisterousness. Even if they can restrain themselves from jumping onto my lap, they can’t contain their energy for long, and are running and hopping amidst my warnings. When this happens, I’m on guard and my body tenses. Even without touching me, they can inadvertently up my level of pain due to the RA Flinch.
I’ve recently had a flare in my hips and sacroiliac (SI) joints and was in a high level of pain for a couple of weeks. One night during that time my five year old was full of energy and dancing around the room. I reminded him that my body hurt, yet he started running right towards me. Scared that he was going to ram right into me, I hollered for him to stop just as he made a sharp turn to avoid me. He said, “I wasn’t going to run into you, Mama.” Yet the fear of seeing that little bundle of energy running straight for me still did damage, as my body tensed up involuntarily in anticipation of the impact. While the pain was less notable than it would have been had he actually collided with me, my tense muscles pulling on inflamed joints ramped up my discomfort.
While these moments are most frequent around energetic little ones, the RA flinch also happens with adults. There are those firm handshakes that cause me to tense and grimace, all while trying to maintain a friendly smile on my face. There are tight hugs from loved ones that would feel good if my body wasn’t so sensitive to pressure. It’s difficult to convey to someone that their enthusiastic greeting, so well intended, is actually causing pain.
The RA flinch also rears its head when I’m riding in a car. When my disease activity is up, it is painful to drive a car. The steady pressure required for the gas pedal can further inflame my right ankle, knee, and hip, and holding the steering wheel can be hard on my fingers, wrists, elbows, and shoulders. Yet having someone else drive doesn’t entirely relieve the discomfort of travel. When I’m driving, I know that there’s a car that just pulled into the lane in front of me and that I’m slowing down. When someone else is driving, I don’t know whether they’ve registered what’s on the road ahead, and therefore I involuntarily brace myself should the driver brake hard. There are also those sharper-than-necessary turns that lead me to steel myself, making my body tense and my joints more painful. Therefore it can be hard to decide whether it’s more painful to be in the driver or the passenger seat.
There are so many things that are difficult to explain about this complex and confounding disease. The fact that another person can inadvertently hurt me with a warm greeting, their driving habits, or without even touching me is a perplexing aspect of this invasive condition.