I live life with an invisible illness. I live my life in the middle of the invisible loss that comes with them.
I am continually amazed at the silence surrounding invisible illnesses. There's constant awareness in the news for things like cancer (Anybody else see all that pink this month?) and yet, while 96% of people with an illness have an invisible one, the awareness for all types of invisible illnesses is small.
Why did I not know about this before the sacred was taken from my life? I want to ask. Why is there such silence surrounding invisible illnesses.
I have a theory. It has something to do with being invisible. It has something to do with a quote I read once:
People anoint bodies in hospital beds with words like “fighter” and “miracle” and “goddess” because of the cultural urge to wrap up formative life events with neat little bows. But in doing so, they silently demote everyone else who dies. Or who screams for an epidural, or who falls apart at the incubator of a one-pound child.
We do not exist or fail to exist — or birth and "fail" to birth — because some are stamped with a rubber imprint of GOOD or STRONG or WORTHY and some are not.
But what about the ones for whom there is no cure? Are they somehow less worthy, less of a fighter, possess less strength?
We're so vocal about diseases like cancer and the people who survive them, and the people who don't. But, I think, in doing this, we do silently demote the ones who won't have a cure, who fall apart at the huge struggle before them in living with an invisible illness.
We do not fail to survive, or fail to fight, just because some are stamped with the sign of "Survivor" and "in remission," and some are not.
My life is measured by the invisible moments. I live my life by these invisible moments. When the diagnosis of an invisible illness comes, it seems there is an urge by society to wrap up this loss and stick it up in the closet, on the top shelf, where it, too, becomes invisible.
I live my life in the invisible moments. I want to be a voice and help make those invisible moments a little more visible.
You are no less of a fighter, or a survivor, with no cure, with no remission, with no awareness. Your fight is not invisble, and neither is your loss.