Because of a certain novel and now movie, both of which I enjoyed, people got their first look into the world of someone with a chronic illness. This made me realize that not everyone fully understands what it’s like to be sick forever. It’s different from having a seasonal cold that you know you’ll get over in a week. It’s being stuck knowing that the medicine you’re taking isn’t going to cure you.
People love cancer stories because they’re “inspiring”, but being sick isn’t as glamorous as it is in the movies. You don’t miraculously lose your virginity a few weeks before you die. You don’t fall in love with someone who has it as bad as you do. You end up living every day in fear that you might just die because of something going wrong. There isn’t someone who crawls into your hospital bed with you and holds you until you fall asleep. Augustus Waters doesn’t exist, but people like him die every day.
In movies, people with chronic illnesses are either miraculously cured or they’re seen dying while putting up a fight. They’re supposed to be an inspiration to us all. However, audience members can walk away whenever they want to. They can continue living their lives as they always have been. In these stories, there’s an end and there’s closure. They’re entertained by someone’s fight with a deadly disease.
My life isn’t a story. There isn’t an end yet. I always hear jokes being made how I have the body of an old lady, yet I look even young for my age. I’m seen as old already, so what’s going to happen if I ever made it that long?
I’m already seen as if I’m at my end.
The physical pain of a chronic illness is nothing compared to the emotional pain. The guy who wrote the chest burster scene from the movie Alien actually had an IBD as well. He based the pain of an alien creature busting straight through you to the pain felt with an IBD. That being said, I still claim that the emotional pain is worse.
There is no light at the end of the tunnel for me. There isn’t going to be a happy ending. I’m stuck with this ball-and-chain of a problem for the rest of my life. I’m the caged bird – trapped as my peers spread their wings. I feel like a burden. I feel completely useless.
My current life plan is hoping that my doctors wait to remove my large intestine after I graduate from college. I’ve already got it all planned out that I can write from a hospital bed. Isn’t that sad?
I crave normalcy. I crave a cure that doesn’t involve me losing a major organ. I crave to have a happy ending, but I’m not going to get that.
So no, being sick forever isn’t all fun trips to Disney Land and Amsterdam. It isn’t holding hands in the pale moon light with your fellow misfit of a significant other. It’s going through medication treatments that are going to probably hurt you more than help you.
It’s living in fear that today’s going to be your last good day.