Sometimes living with ulcerative colitis can take you to some pretty dark places. Sometimes the shame and fear is too much to take. Sometimes the pain…well, nevermind the pain.
Talking about ulcerative colitis with family and friends can be difficult. Explaining what it is tends to be an uphill climb, especially for those with little patience. I have dealt with countless suggestions to “hold it” or to “wait” in the last few years, especially from my less-than-understanding parents.
Some, regardless of effort, will refuse to understand. Some, regardless of effort, will refuse to offer patience. And some, regardless of effort, will refuse to comprehend the notion that it is no longer “fun” to take long drives to strange places without having an exact map of the restrooms along the way.
Yeah, I get bitter.
Beyond animosity, though, I get scared. I get scared a lot more than I used to.
I’m fearful of where UC is going to take me and of how I’m going to end up. I’m fearful of getting worse, of losing more security, of losing my mind. There are moments when fear gets the best of me, when it keeps me indoors and away from the fray. In these moments, I begin to understand just how strong a hold colitis has on me and I begin to understand just how hard it can be to admit that you’re afraid.
Fear comes with every mad dash to the restroom, with every thought of “What if somebody’s in there?” or “What if the toilet is clogged?” It comes with not being able to make it in time, with the absurd impression that people are actually noticing the struggles and the shame and that they’re laughing.
Sometimes I wonder why I care if people are laughing at me. I chew over the days when I used to “go for the laugh” and how I used to love getting a giggle out of anyone, no matter what the cost to my personal dignity. Ulcerative colitis manifests itself in different ways, but for me "it" produced an unbelievable spell of self-awareness, indignity, and self-pity.
When did I get so worried? When (and where) did I lose myself?
Because ulcerative colitis is, by all rights, an embarrassing condition, it can be hard to talk about. There are support groups, both online and “IRL,” that do tremendous work getting people together and getting people talking. These groups are great for understanding conversation, plus there’s usually music after the meetings.