At 19 its hard to be told you have a chronic disease. Its even harder that at 19 you realize this disease takes away the control you had over your own body. After a year before being properly diagnosed, I thought I was just happy to have an answer. I thought that an answer would mean a treatment (if not a cure) and life would go back to normal.
After more discussion, you find out that Crohn’s Disease, in laymen’s terms just means “unpredictable, uncontrollable diarrhea” aka “gross and awkward embarrassing disease”.
I worked hard to hide it the best I could for a year. It wasn’t easy. Leaving group meetings at school to go home and shower for the times I didn’t quite make it to the bathroom was sometimes difficult to explain. Or leaving class 10 minutes after it started at sprint-speed seemed a little atypical to my peers.
The medication worked wonders. Oh boy did it work. Of course, it didn’t cure anything, and it wasn’t healing me but it took away the urgency and that was a life-saver. The urgency was gone but the pain, not so much. There were nights I couldn’t get to sleep, and when I did, I would wake up several times in the middle of the night in pain. But these were things that people could see, it was easier to hide.
But sometimes it wasn’t as easy to hide. Sometimes it hurt too much to walk straight or walk at a normal pace. Sometimes it took deep breathing and concentration to work through the pain. People would notice this, not understand, but notice it.
That’s when I realized it was time to make a change. As a university student, I knew all about stigmas and how they worked and if I didn’t do my part to educate people, to teach them, then I’d only be creating a larger cloud of silence.
It wasn’t easy. Of course it wasn’t easy. But each day at a time, each conversation it gets a bit better. Even writing this blog is a little nerve-racking at times. Putting myself out there, it can be scary.
The thing that helped me the most was getting involved. Doing things with my local CCFC chapter made it easier to talk about it. People understood, people got it, heck, people had their own stories! That is comforting. Once you talk with people who can relate it becomes a whole new world, suddenly the topic isn’t that odd or weird or even embarrassing if you can believe it. When you can become comfortable with it, others become comfortable with it.
If Dr Phil is right then we really “teach people how to treat us”. If we act like IBD is so taboo, people will read into that, they will treat it like its something to not talk about, to not deal with. But if we go into conversations with knowing what we want to say, how to say it, and that its not something to keep underwraps, they’ll understand to.
IBD, as life, is what you make it.
Yours in good health,