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.
Culturally, though, it gets weird. My wife has read women’s magazines with “advice” for avoiding toilet use or flatulence in front of a lover or spouse. The classic euphoria of Everybody Poops is soon substituted with a cruel sense of shame and the need to ignore bodily functions entirely, save for refreshing punchlines in screwball comedies.
Humour is the key to dealing with UC and other disorders of the bowel. Fart jokes, fart sounds, toilet humour, and toilet habits become much, much funnier by default. There is a sense of gratitude for those whose stock and trade is flatulence comedy.
During a colitis flare-up, farting becomes a form of sweet pleasure when it isn’t accompanied by other surprises. With unspeakably abrupt urges to go, crippling pain, exhaustion, and dizzying nausea, the search for comfort is all-consuming. Finding amusement during flare-ups can be complicated; finding disappointment, tears, and humiliation is much easier.
It is so important to be able to talk about UC or Crohn's Disease or IBD or any other “disgraceful” condition because the trap of shame is perhaps the biggest “side effect” of all. It is easy to give up bits and pieces of life to diseases and conditions. It is easy to let colitis or Crohn's or IBD dictate how things will be done, how things will proceed. It’s not so easy to fight back.
That’s where humour can be of great assistance. Learning to laugh at a condition, learning to giggle at the strange sounds coming out of a particular bodily orifice, and learning to smile during those extra-awkward situations can make all the difference in the world.
I, for one, am learning how to laugh again. I’m learning to laugh at myself, but it’s a damn-near-daily struggle against shame and the “need” to be respected. Respected by whom? Good question, especially when it leads to the revelation that “respected by myself” doesn’t appear on the list at all.
The irony, on a deeper level, is that I often act in such a way that is incredibly unlikely to garner respect from anyone, especially myself.
Sometimes, though, I realize the humour of my condition and see a sparkle of how things could be. I laugh relentlessly at a colon quack, at pant stainers, at shit sirens, at rumbles from the depths, at farts. I laugh at myself and the experiences I’ve had. Sometimes I celebrate and, maybe for just a few minutes, sometimes I’m over it.
I hate the dentist. I made a trip to the dentist a few years ago that I’ll never forget, however, and it involved a sudden stop-off on the side of the highway and an incredibly strange but welcome feeling of liberation.
See, the dentist brings out my most stressful feelings. Something about the feeling of those rubber gloves and the taste of the fluoride just does me in. I’ve never had a cavity or any serious procedure, save for wisdom teeth removal, but I’ve always hated the dentist. With colitis, this stress impacts the condition and creates many more urges than previously scheduled.
On my way to the dentist, one such urge overtook me driving 100 km/h on the highway. Amazingly, I didn’t panic. I didn’t freak out. Instead, I pulled over to the side of the road when it was safe to do so and hopped out of my car. It was as though I was being led by a spirit of some kind, but I made my way up an embankment by the side of the highway and, once behind a small cluster of bushes, "dealt" with my urge.
As I watched the cars drive by, none of them noticed the young man squatting behind a segment of bushes. I realized that there was nothing to fear and I laughed. I cheered.
I still hate the dentist, though.
Sometimes all we can do with UC or Crohn's Disease or IBD or life is just laugh. Sometimes, in murky moments of despair and shame and confusion, all we can do to alleviate our angst is to chuckle, to cheer, and to rejoice.