Hi folks –
This morning it was affirming to read a slightly humorous account of someone else’s Ulcerative Colitis. Tales of unplanned public pooping always invoke a kind of slapstick comedy. Anyway, I felt the urge to forward this piece by Cedar Burnett to folks I know. UC disease can be kind of invisible. It was great to see the last 15+ months of my life reflected in mainstream media. I think this notion of “reflection” or “visibility” is an important component of the support I find participating on UC discussion boards, but this was a general web/news site. Hooray!
Please have a read.
http://www.salon.com/life/mortifying_disclosures/index.html?story=/mwt/feature/2011/04/25/when_nature_calls_mortifying_disclosure
Not quite sure I’ve reached the acceptance stage yet.
Most every day I function and get through the morning diarrhea and cramping and bleeding, and show up at the office in slacks and a sports shirt to talk complex statistics and research methods. After long periods of insomnia, leg cramps, irritability, anxiety, elevated blood sugar, or fatigue, these medicine side effects are now mostly minimized or managed. Most days the gut is quiet and, if not, an occasional trip or two to the john is not a big workplace problem. The people who see me every day, see me at my best; and I suspect they are really unaware about how heavily chronic disease is constricting my life. It generally would be awkward to casually mention that I feel lousy, or that I could not catch my breath walking into the building, or that it took half a codeine tablet to get the cramping to stop, or that I’m worried that one of my meds might cause colon cancer, or that dependence on prednisone has made my veins fragile and brought back adolescent acne. You can drop little hints without going into details about blood or rectum or anal mucus or ulcers. You can mention needing to go to the hospital for iron infusions, or you can mention in passing that blood loss might need to be more directly addressed. The story about how you will surely hit your co-insurance cap this year, or deplete the medical savings account months before the year is over – well that does give a little reminder that you have an ongoing struggle. Some colleagues start to get it when they offer you plane tickets and per-diem to attend conferences, and you decline because of concerns about travel. Others just puzzlingly say things like “glad to hear you are consistently feeling better” and you wonder what you said to give them that idea. Maybe it’s because whenever folks ask, “How’s it going?”, you answer “getting by” instead of “river of bloody crap” or “I have nightmares about having my colon removed.”
But, in the end, except for the handful of really sick mornings (or sick days) where you send a polite email about GI distress, or feeling lousy, there you are at the office, looking healthy, functioning, week after week, month after month, 15 months into treatment, wondering if anyone is talking about your lowered productivity, or if they misapprehend that I was “treated” for that way back last year – problem solved. I know that I’m luckier than some who aren’t insured or aren’t functioning. Maybe that insight is the bridge to the Cedar’s closing thought “Most days it’s easy to feel grateful.” Like I said, I’m not quite there yet.
Still, it was great to read this piece on a mainstream site – not sequestered on a discussion board. It was great to feel visible.
Just saying,
-Daniel