'The Ick' of Ulcerative Colitis

It’s 2:47 a.m. when I first wake up to rush to the bathroom. As I look in the mirror, under the buzzing glow of the overhead fluorescent lights, I can’t help but feel trapped within my own body. All at once, I feel so confined to my internal reality, yet deep down, I am desperately scratching at the boundaries of my own body. I plead with bones, guts and white blood cells to relax. I know I can’t get too worked up at my body because I don’t want to add any turmoil to the war waged inside of me. I’d like to credit my calm demeanor to rigorous Buddhist training, but really I just don’t want to make anything worse. I argue with myself and with my body like a bitter old married couple. In these moments, I am two different people, though really, there is just one of me, alone in the bathroom at 3 a.m. It’s an odd feeling.

• What is Ulcerative Colitis?

It doesn’t help that my house is silent and I am alone in a slumbering world. The unwatched TV sits silently screaming late-night infomercials behind a dark screen, my friends are all binging tonight’s latest dream, and I am so alone. I scamper back to bed and wrap myself in a bundle of cold sheets. Slowly, I drift back to sleep until eventually, I awake to an intruder breaching the tranquility of my bedroom. An icy wave of panic washes over me as I realize the mysterious invader is under my pillow. Then, I reach over and hit the snooze button on my phone’s alarm. It is 7:21 a.m., and I am no longer alone.

Over the past three years that I have lived with ulcerative colitis, I have experienced many challenges. Anemia, bleeding, pain, weight loss, and other symptoms have all forced me to confront health as a process rather than a given. “The ick” is one of the most complex struggles I have faced since my diagnosis. The ick strikes at any time and in any place. Whether it is 4 a.m. or 2 p.m. and whether I am at home or on a roller coaster at a theme park, the ick is there. The ick sticks to the moments I spend in the bathroom in the dead of night and the moments when I am surrounded by my friends at a party.

The ick is a persistent, sickly, and grimy feeling that sticks to me. The ick is isolation, discomfort and doubt all mixed together like the ingredients of a pot of gumbo. The ick marks me as sick, as a patient and as abnormal. Sometimes, I wonder if I’ll ever get rid of it. Secretly, the truth is I feel like the ick is a part of me. It makes me feel unclean and tainted. When I try to explain the ick to others, often I feel even more alone than before I said anything.

Eventually, however, I’ve discovered the cure for the ick. Sadly, it’s not removable with Clorox, or Oxy Clean or any organic cleaner from Whole Food. Instead, and ironically, the ick is best treated by surrounding myself with supportive others. Today, by connecting with my community and the chronic illness landscape, I have learned I am not icky, or alone. While I am different and challenged by my health, the ick is not really what sticks to me. Instead, what sticks is what I make stick and what I choose to put out into the world. After all, together we are more than any disease.