Why Me?
A Story of Ulcerative Colitis
I started writing this in June 2021 when I was at my physical worst. Back then, I didn’t have the courage to finish writing it because I hadn’t yet encountered my happy ending to this story. Since then, I’ve learned that perhaps not all stories have to have a satisfying close; some chapters are meant to be left open as you go on to write other novels.
The idea of publishing such a personal experience is terrifying. But when I first got diagnosed with ulcerative colitis, I scoured the internet to see if anyone had a similar story to share. A post like this would have given me some solace and some perspective on the long journey ahead. I sincerely hope this can help at least one person who may be going through the same ordeal.
In the final semester of my undergraduate degree, I started seeing the first symptoms of what would be ulcerative colitis, from dizziness to loss of appetite. These, I believed, would disappear on their own. And so I let the symptoms fester until I had to be admitted to the ER in March with general weakness, nausea, and stomach pain. After being diagnosed with iron-deficient anemia, I was discharged with a gastroenterologist appointment in a couple of weeks. However, I was back in the ER a week later with a significant fever, which, with COVID cases rampant in Vancouver, was cause for concern. This time, I had to be hooked up to an ECG to monitor my elevated heart rate and to an IV since my blood pressure was dangerously low. I was discharged again after having some X-rays done, a COVID swab, and advice from the doctor to “not catastrophize my situation by using Dr. Google.”
But, when all you know is excruciating stomach pain, bloody bowel movements throughout the day and night, inexplicable fatigue, unprecedented hair fallout, and a disconcerting 10 lb weight loss, it’s difficult not to assume the worst. I compared myself to my fellow students, who probably don’t have to deal with so many problems. I compared myself to my friends, who would never understand what I have to go through. I even compared myself to myself from a year ago and envied how things were so much easier back then. At every moment, I would ask the universe, “Why me?”
I’ve been running non-stop, achieving milestone after milestone, but my body was screaming at me to slow down.
I was juggling my capstone course, final exams, and general post-graduation anxiety, along with this newfound uncertainty of my health that significantly limited my options. I had originally hoped to travel around, maybe do grad school, and just enjoy my life. Now, my life definitely was not enjoyable; I wasn’t sure I could even work a job from home, let alone travel. After building a career for so many years, I could no longer cash in my effort for results. I’ve been running non-stop, achieving milestone after milestone, but my body was screaming at me to slow down. In fact, even at the ER, I was writing a final paper for a MTRLs course and thinking about how I would have to catch up on the lecture I was missing. I wanted some promise of my life back, but there was nobody I could ask and nothing I could do except wait. Not having any certainty or any answers allowed my imagination to take control of my emotions.
After nearly two months of doubt, fear, worry, and tears, I finally got a colonoscopy and was formally diagnosed with ulcerative colitis on May 21st, 2021. I knew that this moment was one of those pivotal moments that changes your life forever. At first, it was actually a relief to finally attribute my symptoms to a singular cause, and I felt almost hopeful because “at least it wasn’t Crohn’s disease or cancer.” It didn’t last long. All I could do was cry — not necessarily because I was in pain, but because my symptoms were finally real. It wasn’t just a passing phase, but something I would have to deal with for the rest of my life. Any hope I had left for having a “normal” future came tumbling down around me. At just 22 years of age, from this point forward, I have an additional factor to consider — a footnote to read before I make any decision. Will I be able to socialize with people? Go out for drinks? Participate in sports? Company dinners? Just hang out with friends?
I was no longer, and have never been, completely “normal” compared to other people.
Part of me continues to wonder how I suddenly became so ill so fast, as if having a scapegoat would make me feel better. It would be too easy to blame it on a germ-laden meal rather than accepting that there was something wrong with me this whole time. But if I look closely, the symptoms were probably there all along, just waiting to flare up. This was another mental obstacle that I had trouble accepting — I was no longer, and have never been, completely “normal” compared to other people. There is something new I have to append to my identity from now on.
So why me? I’ve always held the belief that everything happens for a reason. I also believe that you are only handed problems that you can handle. But when, at the worst of my illness, I found myself praying to a God I don’t even believe in to tell Him that I couldn’t handle it anymore, I was truly stumped. Maybe it’s a consequence of my poor ability to take care of myself. Maybe I needed this to grow closer to my mom, my emotional pillar. Maybe it’s a sign that I shouldn’t pursue stressful jobs. I don’t think I’ll ever know the answer to this question, or perhaps there is no answer in the first place.
Most days, I just try to get by without thinking too much about the future or the philosophical questions of “why.” I can almost forget I have this disease, save for the four pills I rely on to curb my physical symptoms. In these instances, I can sit outside and enjoy the breeze, thanking the world for giving me some time to breathe and continue my race. But, seemingly unprovoked, I might feel a cramp in my abdomen, sparking unbridled fear at the prospect of experiencing the nightmarish symptoms all over again.
One good that came out of this is a new perspective and a newfound appreciation for the truly small things. I feel relief after each successful bathroom trip, and I am excited when I can eat congee without cramping up. I am proud when I do a low-intensity workout, and everyday it feels like I am learning something new about what I can do. More than ever, I am forgiving myself for being less productive or for being tired, whereas I would have felt frustrated before. My body may not be as predictable as it used to be, but I am learning to just take it one day at a time. I’m still in this race, just running a little slower and with a lot more help from my mom. It’s been a sobering experience.
