Early in my diagnosis, a whole new world was opened to me and I found myself lost and struggling to leave it. I wanted what I thought was “normal” back. I didn’t like what was happening to my body, or my mind for that matter. The world that opened to me was terrifying and lonely. It was the world of the unwell, the chronically challenged, the forever changed.
There were a lot of things about being new to this world that were difficult, but one of the hardest was learning to use language that best helped me communicate my experience to those who were still living in the world of the well. Because, when you live in the world of the well, you have no idea what it’s like on the other side.
You can be sympathetic. You can be kind. But, you cannot understand this strange and other worldly place.
What I know now is that until it happens to you, you’re not really meant to understand it. You’re not meant to understand the happenings in this bizarre world of invisible illness. You see, because that’s the thing, we look just like you. We even act like you but we are most certainly not you.
We are creatures unto ourselves, living in a secret world of unseen seething physical pain. We hide it and we hide it well. We do this for you. We don’t want to make you uncomfortable because we know you cannot communicate with us when we do. So, we do our best to look good and speak of happy things.
We strive for what you call normal, knowing that even at our best we fall just a little bit short. Yet, we know that trying is better for you. It makes you more comfortable with us, with our kind, so we do it no matter how we feel. You don’t appreciate it. You take it for granted. You expect it.
This used to make me angry, infuriate me in fact. Now I just accept it as the social order of things, because what I know now that I didn’t know when I first entered this other world, is that until it happens to you, you don’t just lack understanding of it, you lack respect for its power.
This other world is a very powerful place. It is a place of sickness and pain and sorrow and grief and life altering things. Until it happens to you, you cannot also see the hope in this place. Instead, all you glimpse is the darkness and uncertainty and these are not things of your world.
What I know now is that you are more afraid of the world to which I belong than I could ever be. I am on the other side now. You are not. I am no longer silently tormented by the fear of the unknown. You are.
So until it happens to you, I will respect your lack of understanding. I will not hold it against you. I will put up with your ignorance and inability to communicate. I will do all that I can to make you comfortable so that you don’t have to fear what I know. I will continue to pretend that all is well because this is easier for you. It will always be easier for you.
Until it happens to you…