My name is Dana–I’m 25 and was diagnosed with UC two years ago. I’m a writer, currently living in sunny Santa Barbara, CA. When I’m not in the bathroom, I’m hiking, beaching, or holing up in my room reading The Hunger Games.
I’m sure there’s no fun place to be living with undiagnosed (or diagnosed, for that matter) ulcerative colitis. But I’ve gotta say New York City may be one of the worst.
Two years ago, I was waltzing around Manhattan without a care in the world. I was between my second and third years of law school and I had decided to spend the summer doing an internship in NYC. As a West Coast native, I was ridiculously excited for what I assumed would be a summer of jumping in taxis, drinking cosmopolitans, and spending evenings on the observation deck of the Empire State Building.
Of course, I quickly found that A) I couldn’t afford taxi rides, B) cosmopolitans made my stomach hurt, and C) nobody goes to the Empire State Building. Of those three realizations, the one that really ended up negatively affecting my life that summer was the first one. Under ordinary circumstances, the subway is an acceptable, if slightly dirty and not-so-slightly crowded, mode of transportation.
But when you have to go to the bathroom every 15 seconds, the subway is an underground pit of anxiety, sweat and desperation.
I had been in the city for about three weeks when the symptoms started. It was the summer of 2010; I had just turned 24. Every day, I rode the subway from my Brooklyn Heights apartment to my job on the upper-upper-upper east side of Manhattan–which, as anyone familiar with the city knows, is a bitch of a subway ride. But for those first few weeks, I was fine with it. I actually enjoyed walking to the 4 train every morning, balancing a cup of coffee and what felt like 17 bags of personal belongings.
Then the UC symptoms flared up and my commute became a whole lot more interesting. I don’t know anyone else with the ailment (to me, disease is too strong of a word and sickness isn’t quite accurate…I played around with calling it a ‘condition’, but that sounds weirdly mysterious), so I’m not sure if my experience was the norm.
For me, the ailment popped up in a 24-hour span. One day, my digestive system was tough as nails–I could eat anything, drink anything, and never seemed to get those things called ‘stomachaches’ that my friends complained about. The next day, I was standing on the subway platform, reading a romance novel (I used to be embarrassed by that particular habit, but after experiencing UC symptoms on a New York City subway, a stopped Los Angeles freeway and in the middle of a few opposite sex sleepovers, my addiction to romance novels doesn’t seem so shameful), when I felt a tug coming from my lower abdomen.
All of a sudden, it felt like someone was scraping the inside of my intestines with an ice cream scoop. “Pay attention to me!” my stomach seemed to be screaming. In what would prove to be one of the most ill-advised decisions I’ve ever made, I stepped onto the subway train when it pulled into the station a few minutes later.
Within about 30 seconds, I knew it was a mistake. I had to go to the bathroom. Like, now. Anyone who has UC knows the feeling. The problem was, I was a hostage of NYC’s underground transportation system. I couldn’t get out of the train between stops if my life depended on it. And at that moment, I felt like my life (or at least my reputation, my pride, and my clean track record of never having gone to the bathroom in the middle of a crowded subway car) depended on it.
At the next stop, I maneuvered around the 19,000 people standing between me and the subway door. I ran up the stairs in a blind panic, emerging onto a completely unfamiliar Manhattan street corner. I pulled out my iPhone and frantically typed “FIND ME A BATHROOM” into the map application. Unfortunately, that’s the one thing iPhones can’t do. Eyeing a McDonald’s down the block, I started running in the direction of the Golden Arches, a sure sign of a public restroom.
I ran about four steps before realizing I was caught in a catch-22. Running would get me to the bathroom faster, but it would also increase the urgency of my need for a toilet. So I walked. At that time, I had never been happier to see a bathroom–though my appreciation for public restrooms would continue to go up in the coming months.
There was one woman in line ahead of me. I managed to arrange my face into a soothing smile, one that was completely mismatched from the panic I felt inside. Concentrating heavily on breathing in and out in an effort to NOT concentrate on my bathroom emergency, I waited. When it was finally my turn, I didn’t know what to do first–dance a celebratory jig or pull my skirt down and run for the toilet. Of course, I went for the toilet. The jig would come later.
It was glorious, as the experience would be so many times after that. Sometimes I think suffering from UC is worth it, just because finding a bathroom when you really need one feels so satisfying.
That first day, I spent 15 minutes in the McDonald’s bathroom, then left and headed back to the Brooklyn Bridge subway station. After stopping at a Starbucks halfway down the block for another bathroom stop, then waiting there for 10 minutes to make sure it was safe to go back underground, I hopped on the train.
My stomach, my colon and I finally made it to work in one piece.
The next three months were a blur of sweating on trains, fielding pissed-off looks from McDonald’s employees every time I used their restroom and failed to buy something (my all-white-rice-and-ripe-banana diet wasn’t really conducive to BigMacs), and trying to explain to my boss why I would periodically disappear to the bathroom for hours in the middle of the day.
I was finally diagnosed with UC a few months after I moved back to Los Angeles–but that’s a whole different story. Teaser: to this day, I can’t decide which is a worse mode of transportation for someone with UC–a packed subway with the potential to strand its passengers underground between stops, or a crowded Southern California freeway where traffic could come to a dead stop at any minute.
Where I’d Like to be in 1 Year: