I am ill, too.
somehow I have lost myself, become both more and less than I was before. they say that what doesn’t kill you makes you stronger. they lied.
the worst part of this to me is the ticking of the clock, you know. the knowledge that it has decades to get worse. the realization that there is no cure—that it’s so rare there is no profit in fixing it. medical companies don’t care about our suffering and I wish I could call it indifference, but it’s not. they rely on us to be sick as much we rely on them to make us better. and the truth is, there’s no profit in curing my disease. and there may be no profit in curing yours, either.
type the name of my illness into google and you will eventually come across the following words: devastating, heartbreaking, tragic. my life is not a tragedy, unless if you count all the times I tried to be more than I could ever hope to be. being sick is not, in and of itself, tragic. but missing out on life? being technically alive but not being able to live? that’s the saddest thing I can possibly imagine. that is sadder than the death of someone you loved more than yourself.
I am not there, not yet. I might be one day. and I wanted to write this letter to all of the people I don’t know and will never know, to tell you that I understand what it’s like to feel everything slipping away through your fingers. I know all about the doctors’ false comforts, I know about the horrible tasting pills, I know about the intricacies of mental agony. I know the feeling of razorblades cutting through your chest in the moment you realize that you may not be able to accomplish your dreams. I know the feeling of being imprisoned in a bedroom while everyone else lives. I know, I know.
I know that dreamlike quality that settles over everything when you fully come to terms with how fucking terrible having a chronic illness is—the sense that you’re dreaming, because there is no possible way that life could ever do this to you. Life could never be this cruel. In a few minutes you’ll wake up.
But it did, and it is. And no, you are never going to wake from this nightmare.
I can’t fix you. I can’t fix myself. But hopefully someone will read this and feel a little better knowing that someone else understands. Because that’s it, isn’t it? We need to be reminded that we are people, not illnesses.
You are incredibly brave just for getting out of bed every day—even if you don’t get out of bed at all. You are incredibly brave just for opening your eyes in the morning to see the sun. You’re brave for taking a shower, for making a meal, for playing with your dog. You’re brave for trying to live when death might be blessedly easier. I don’t have it nearly as bad as a lot of people I’ve spoken with on the internet, no matter what their afflictions. I know I am lucky. And I try to make the most of absolutely everything that I have.
You are a precious, brave soul and don’t forget it.
“If you can’t fix it, you’ve got to stand it.”