uncertainty & unification

I don’t know how to live without sickness, simple as that. Even though my long term memory isn’t bad, I still hardly remember what life was like before I started getting ill. Back in grade school, I remember supervisors and classmates asking why I missed so much class. I’d tell them about hospital visits and bizarre medical happenings like it was routinely and average to do so. Their reactions proved that it wasn’t. So, right off the bat, I felt sort of isolated from my peers. It was so minor a sensation that I overlooked it. I ignored the expectation of censorship. I think that small dose of isolation at such a young age is part of why I’m so okay with being alone now.

Oftentimes, I become unaware of the uncertainty that comes with chronic illness. My body and mind grow so accustomed to unpredictability and unpleasant surprises, that I'm easily able to roll with the punches. And then, there are times like these, when I realize just how deeply routed my fear of doubt is. For a couple of months, I put this fear on the back burner. When I didn't feel like welcoming it, I ignored it. And now, it's all coming crashing down. Parts of my childhood come rushing back into my mind out of nowhere, parts I forgot to remember. Even events of 2016 that I brushed under the rug are deciding to, now- of all times- haunt me. It's conflicting. I'm so used to living with being unsure, but somehow, it's still my biggest fear.

Imagine it like this: we're all puzzles. Our pieces are scattered before us throughout our lives. As we grow up, we start collecting them, discovering how we're built and the pieces that are still missing. As soon as you start getting used to who you are, though, something changes. A piece disappears while you're sleeping, with no warning, and no chance to try to find something to put in its place. It's just gone, vanished. And, it keeps happening. You can't keep up with time when something keeps setting you back. That's what growing up with chronic illness has been like for me. Because of that, I'm not great at settling with unanswered questions. Hoping can be a challenge, and learning how to cope is a continuous journey. I'm trying to trust more on the puzzle itself than in the pieces I can't find. (A similar concept to what's said here is the incredibly educational and eloquent "spoon theory." If you haven't read through it, you should.)

I was told recently, "well, nobody likes uncertainty." I agree! Of course not. The lack of knowledge isn't notoriously enjoyable, especially for people who enjoy learning. We all deal with qualm from time to time. But, it's different with invisible illness. The doubt becomes chronic, it becomes a lifestyle. When you're weird like me, your symptoms can be too complicated to find a diagnosis. When you can finally find a diagnosis, you have to deal with the fickle behavior of the disease itself. Blood sugar spikes and dips. Arthritis flares. Good days. Bad days. Presyncope. Or, is that syncope? Countless questions, thousands of "what ifs," constantly reminding yourself that recovery is trial and error... it's exhausting.

That's why I'm here, that's why I'm writing this. There are so many of us who live with the same sicknesses and unique stories. Too many of us, however, feel alone when we shouldn't. Sometimes, remembering other people are out there with the same illnesses and problems as myself is shocking. A different "what if" pops into my head: what if my experiences can help people? The thought alone helps chip away at the hopelessness a bit. I'm here for the chronically ill. We are not alone. The uncertainty can't consume us if we let it bring us together.

#community