The Human Eggshell
When I’m in a flare, every subtle sensation on my body can be agonizing. This is hard enough to contend with when I’m by myself, in those moments when the gentle pressure of a seat belt on my hip or each little bump in the road causes a jolt of pain, or when I can’t sleep under the covers because the weight of the blankets feels too heavy on an aching ankle or knee. However, when I’m around others these moments can be even tougher as people who love me inadvertently cause me pain; the vulnerability of such extreme sensitivity makes me feel like I’m a human eggshell.
Before I was a mother, I had these moments with other adults. I have some friends and relatives who are firm huggers, and one of their embraces can make the pain in my shoulders and elbows shift from an ache to a sharp, stabbing sensation. My husband might squeeze my hand in an attempt to express his love and concern, yet instead it shoots the pain in my swollen fingers from a “6” to a “9” on the 1-10 pain scale. And intimacy in the midst of a flare, when not downright impossible, has to be approached with the care and precision of someone detonating a bomb.
Once I added kids to my daily mix, my human eggshell moments have become not only hard on my body, but also hard on my heart. When my hips are bad I have to tell my two-year old son to stop clamoring on me, and tell my four-year old daughter that she can’t sit on my lap for story time. Even having one of them cuddle against me can cause too much pressure on my joints to bear. They are too young to understand why these actions, which I usually respond to with joy, are suddenly off limits. Even the vibrations of them running through the room or jumping up and down can jolt my joints, causing me to ask them to settle down when ordinarily I’d be happy for them to get out some of their energy. When one of them steps on my swollen toe joints I can’t always contain a yelp of pain, and they are a bit bewildered that they could elicit such a big reaction from such a small movement.
I do my best to explain that sometimes my bones hurt because they are sick. My daughter will tell me to go to the doctor and my son will ask to see my boo boo. A chronic condition that flares up inconsistently makes no sense to them, as fortunately they are healthy kids and in their experience a trip to the doctor or a band aid and a kiss to make it better usually do, in fact, make it better. In these moments, as they grasp, unsuccessfully, to understand what it is I’m experiencing, I reflect on just what a crazy disease this is. I have a hard enough time understanding it myself, and I’ve lived with it for many years. There are so many aspects of having arthritis that are difficult to bear, but the occasional need to keep the people I love at an arm’s length is one of the things I hate the most.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?