What’s the hardest part of being chronically ill? In my opinion, it’s the wait.
Waiting for medications to work, waiting to get a bit more energy, waiting for a flare to hit, waiting until the day is over, and most of all, the wait for any doctor’s appointment or test.
If you’ve been in the chronic illness community for a while, you unfortunately know all too well about all the waiting game. Waiting is a big part of our lives as people living with illness, and it is also something that takes the most strength in my opinion.
I mean how strong are we all for making it this far?
Waiting for all these things can feel like it’s something that’s killing our patience, but also growing it at the same time. Time is a strange concept. As Einstein declared, time is relative. An hour spent having fun may only feel like a few seconds, while a second spent on a hot stove feels like hours. When you add pain, brain fog and medications to the equation, time becomes even more relative. On a particularly bad day, an hour can feel like a lifetime, but at the same time, also very short because you don’t really notice it going away.
Then, enter in waiting. In our little chronic illness bubble, waiting is something we are all familiar with. Some people may have become accepting of it, but easy is something it will never be. We are always waiting for the next thing, whether it be for an appointment, waiting for medications to kick in, or finally improving a little.
To be quite honest, the endless wait is crushing me.
Waiting for my next MRI and then a month later for an appointment, only to hear we have to do further testing — and then waiting on that is completely frustrating.
In the meantime, I’m stuck.
I’m stuck with a tube on my face going all the way through my body, stuck with an annoying pump, stuck with all the other symptoms and stuck in this way of life.
Now I hear a voice at the back of my mind saying you always have a choice. And to that voice I say, screw you. Yes, we always have our individual choice, but at the same time, we are dependent on healthcare professionals. So as much as I want to be in charge and manage my own time, I’m stuck again in a waiting game.
And so together we wait.
We wait for a new day filled with newfound strength to move on and grow our patience until we get to the point where we can freely plan our time.
We wait for a time where we will be actually doing things instead of waiting for things.
So with that I wish you all strength, patience and a universe or higher power that can perhaps ease the road a little.