I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real and that we are a people full of grace.
There is not one thing that is easy about living in a body that won’t cooperate. Even when many of us attempt to make it look like a walk in the park, it is more like a trudge though thigh high muck without the benefit of protective boots. Our desire for some visual sense of normalcy is for our own benefit though. If we act and look as if we are okay, maybe we can believe it too, even if for a little while. Why should we be relegated to PJs, sweatpants, and no make up 24/7. We have every right to look our best and to try to live as normally as we can but, just because we are doing this doesn’t mean we don’t suffer. We do. We suffer in ways most people cannot imagine and we often suffer quietly and alone. Ours is a misery we do not share and we do not dwell upon.
If we could put just one of the “Doubting Thomases” in our body for 24 hours, I suspect they would be shocked at how we work just to take a simple breath of precious life giving air. Every breath is a chore unto itself. Every inhale and every exhale is exhaustion for us. The other thing that would surprise a non-believer is the amount of constant pain we are in. Somedays it is low level pain, sure, but it is always there and like our shadow, it never leaves us. Some days it stops us cold. These are the days we hide from you. These are the days we grieve privately for the person we used to be, before life became about effort and lost its ease.
Doubters would be truly horrified to learn how long it takes us to heal. A mild cold can turn into something serious or even life threatening in a moment’s time. A cut or a bruise can take weeks if not months to go away. There is no telling how our bodies will react when sickness lurks or injuries befall us. It is astounding how vulnerable we are because of our sarcoidosis. It is also frightening because while we know living in a bubble is not realistic, living like nothing is wrong with our immune system isn’t either and finding a balance can be very difficult, sometimes lonely and occasionally overwhelming to figure out. While we might never say it out loud, everything we do, or don’t do, revolves around our best guess in how we think our bodies will react in any given situation. We are held hostage to our disease even when we pretend we are free.
Forced empathy. That’s the superpower I want. I would use it sparingly. Only on those who are knowingly critical or obviously skeptical. I wouldn’t make them suffer long, just long enough to learn the valuable lesson that you shouldn’t judge what you don’t understand or what you yourself have never experienced.