During this month of “Sarcoidosis Awareness”, we are hearing a lot about the disease, what it is and how hard it is to live with. I think bringing awareness to these things and the fact that there is no known cause or cure is important but for those of us who live with this disease, bringing awareness to what it is and how it impacts our world is not something we do once a year for a month. It’s how we live our lives. We spend a lot of time explaining ourselves. Why we are so tried. Why we cough so much. Why we wear an oxygen mask. Why we missed work yesterday. Why we have trouble walking. Why we feel lousy but look good.
People frequently tell us, with confusion and sometimes with accusation, that we don’t look sick. For some reason, our physical appearance becomes a smoke screen for what is really going on, which is fascinating because it means people expect us to walk around looking ill, in dirty sweatpants and no make up, like we don’t actually have a right to look our best. It lulls those without the disease into a false sense of security that we are doing better than we actually are and if we are honest about it, truly, we often play along. It’s just easier to sweep reality under the rug sometimes. But, how we look is not necessarily a measure for how we feel which is why we then end up explaining ourselves and our disease, over and over again like a broken needle on an old fashion record player.
It’s easy to be dismissive of sarcoidosis. Not enough is known about it and there is no true pattern to how it will play out for any given patient. It’s rare and most people have never heard of it. And, it’s generally invisible. We don’t look sick…most of the time. In fact, most of us have learned to mask our pain so well, we can sometimes even fool ourselves into moments of normalcy. Sadly, there is nothing normal about sarcoidosis. There is nothing normal about the contrast in how we feel and how we look and there is nothing normal about having to make a daily assessment about our goals based on our pain and energy levels. There is nothing normal about the losses we have to accept.
We may look like our old selves, but we have changed. We are vulnerable because we have learned that life is fragile. We have come to understand that nothing is to be taken for granted. Our health could turn at any moment, forcing us to say goodbye to the life we are currently living. We understand grief in new and profound ways because may of us have lost careers, friends, homes and more. We’ve become watchers as those around us steam ahead, doing so with no recognition for our inability to keep up. In subtle ways, all around us, we know we’ve been left in the back of the pack. We might finish the race, but we aren’t going to win.
So, come April 30th, you might see less purple splashed on the internet, you might notice that your friends who have sarcoidosis, aren’t posting about it every day and you might see fewer “likes” for posts about the disease. For those of us who have sarcoidosis making people who don’t have it and never heard of it, more aware of it, is a life long event. It will remain something we strive to do until better quality treatment is offered, until the cause and cure are known….until we stop dying.