For quite some time, I’ve been answering an important question incorrectly. People know something is wrong; they know I can no longer teach, they know I am often in pain; they just don’t know why. So they’ll inquire about my legs (where the pain is concentrated), and they’ll want to know what the doctor had to say. And I give what has become my standard answer: “It’s an autoimmune disease.” If they inquire further, want more information, then I tell them what I was told: “It has over-lapping symptoms of lupus, rheumatoid arthritis, and myositis.” Questions usually end then because people don’t understand what I’ve said. I don’t fully understand what I’ve just said, but that’s all I know.
But I recently spent a month-and-a-half as a member of a chronic pain group. It was an eye-opening experience for me, in many ways. For instance, in one of our sessions, we were told that we each needed to develop a “soundbite.” Much like newscasters will say something catchy that keeps us tuned in and waiting to hear the whole story, we (the members of the pain group) needed to develop a “soundbite” to articulate how we were feeling.
Telling someone I have an autoimmune disease doesn’t really mean much. There is a lack of information, a lack of comprehension, and thus a justifiable lack of understanding and empathy.
When people would ask me how my legs feel, I would tell them they often feel heavy, like I have weights strapped on them. But, the neurobiologist pointed out, that many people do exercise with weights on their legs. What makes my weights different? Why is it so painful? So I had to stop and think about an image, something visual that would somehow get across to others what my legs feel like when they are “heavy.”
It feels like I have elephants sitting on my legs. And with those elephants taking up residence on my legs, I still have to get in and out of the car to pick up my son from kindergarten. I still have to get on the floor and play cars with my son. I still need to push the shopping cart and buy groceries for my family.
My legs don’t always feel “heavy.” Sometimes, the pain is concentrated in my left calf, where it feels tight and hard. Now, some women covet tight and hard legs. Not me. This pain makes every movement, every up-and-down from a chair, a struggle. It feels like my calf is being squeezed by a giant set of pliers.
It’s quite an image. When I have shared those statements with others, there’s a strong reaction. Usually their face scrunches up, their eyes widen, their hand goes to their mouth. I’m not saying it for shock value, I’m merely trying to more clearly articulate how I’m feeling.
And maybe now, since I can explain myself better, people will have a bit more understanding and a bit more patience when it comes to my slow walking. In any respect, I’m learning to use the tools I need to more effectively navigate living with an autoimmune disease, elephants and all.