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Her Story: I Have Ulcerative Colitis

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In 2006, when I was in the sixth grade, I was sick for about five months with stomach pains and nausea. I constantly woke up throughout the night in pain, and consequently, I was tired all the time. I missed school, and when I went to a normal pediatrician, she sent me to a specialist. After blood tests and numerous doctor’s visits, I was told I had ulcerative colitis.

UC is an inflammatory bowel disease in which the colon’s lining becomes inflamed and develops tiny ulcers. It requires medication, and it can cause painful flare-ups that disrupt your everyday life. During flare-ups, my body has trouble absorbing nutrients, so I lose weight, always feel tired and have a constant pain in my lower abdominal region. This disease is manageable, but it’s incurable, and very little is known about it.

As a 12-year-old, I couldn’t spell the disease, much less understand what it was. It took a few months, a few different attempts at medication and plenty more blood tests to find what treatment worked for me. With no cure and no known cause to the disease, the only answer was daily medicine and a carefully watched diet.

Moving in to college my freshman year, I was absolutely terrified. What if my roommate thought I was weird because I took meds? What if I felt sick and couldn't find the bathroom? What if I couldn't control my symptoms? A year earlier, a family friend went to college and dropped out his first semester because his ulcerative colitis flared up and he ended up in the hospital. My biggest fear to this day is that my ulcerative colitis will prevent me from living a normal life.

I went to college and had a flare-up the first week. For two weeks, all I ate was salad and fruit, plain with no dressing. I slowly got used to college life—taking the bus to class, finding the right building, convincing myself to study and not watch Netflix. To everyone else, I was a normal, healthy college student. Few people could tell that sometimes I couldn’t sleep because I was in pain. Some people noticed I tended to stay away from any “complicated” cafeteria food, but few thought of it as anything more than me being a picky eater, which I actually am.

Due to a weakened immune system and constant contact with hundreds of other people, I was sick for most of the year. I had bronchitis leading up to freshman year and a constant cold from November to April. Some days I felt fine, and other days I felt like I would pass out while walking up a flight of stairs. It's difficult to explain to friends that when my stomach hurts, it’s not the same as their experience of a stomachache. When my stomach hurts, I can barely move. It wasn’t easy, but towards the end of the year, I found a rhythm.

I've never been one to complain about this condition because, honestly, it wouldn't help. My close friends know I have it, and at a February retreat, I broke down in front of a room full of 100 people and explained how alone I felt. Later, I would cry again in front of the 100 people I had just met because a girl came up to me afterwards and said, “I think we have the same thing.” This fall, I met yet another girl with ulcerative colitis. It’s not something people talk about, and you really can’t tell just by looking at someone. But now that I know there are others going through the same thing I am, I don’t feel so alone anymore.

Yes, the pain is still felt just by me, and it’s impossible to understand unless you have the disease yourself, but even by telling people about it I felt less alone. No one judged me for being sick, and no one thought twice about asking me to hang out. They still thought I was normal, and they just didn’t ask questions if I said I felt sick. They understood I had to deal with it and they didn’t take it as me avoiding them or being weird.

Now, midway through my sophomore year, I’m planning my semester (or maybe even year!) abroad. Studying abroad has always been a dream of mine. I want to live in Europe for at least a semester. I want to explore all the cities that are older than the United States. I want to send postcards, each with a stamp from a different European city. However, ulcerative colitis makes it hard to travel. For no reason, I might start to feel sick, and there's nothing I can do but curl up in bed with a heating pad. I can eat well and exercise, but it's still a random occurrence.

A recent vacation abroad showed me how sick I can get while traveling, but I’m really trying to not let that stop me. I honestly don’t know if I’ll make it abroad. When you say you have a chronic illness, people tend think you’re limited in what you can do. I don’t take it personally, but after meeting with an adviser about a semester overseas, I knew she had her doubts the second I mentioned my condition.

It scares me that I don’t know if I’ll be fine tomorrow. It scares me thinking about how I’ll be able to manage a job if I can barely manage long car rides. I dream of new places and adventures, but in the back of my mind, there’s always the possibility of getting sick. This disease doesn’t define me, but it has had a huge impact on who I am.

I take advantage of the days I’m feeling good because I know that tomorrow I could be sick. I don’t take life too seriously because petty fights don’t seem as serious compared to this disease. I like to smile and laugh because being sad about future possibilities is pointless. I don’t stress over exams because I’m healthy now and I think my health is more important than my grades.

I have a whole other aspect of life to worry about that other people don’t have to worry about. If that’s under control, I rarely try to find fault with the rest of life. Am I scared for the future? Yes, I am terrified that this will affect my entire life, but I realize I will cross those bridges when I get there.

For now, I’m planning on accomplishing my dreams. Going to Boston College was one of them. I made it here—through hell and high water, I made it to my dream out-of-state school. Ulcerative colitis will always be a part of me, but I am trying so hard for it not to be the reason I don’t do something. So yes, it’s difficult; yes, it’s painful; yes, it’s scary. But I’ve learned to live with UC, and now I’m learning to thrive with it.

 

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