Reflecting on my Chronic Condition

By Shahin Saberi

“I am starting to come to terms with the chronic condition, and, while not letting it define me, am comfortable with letting it be a part of who I am.”

After sixteen years of living life as a healthy child, I was suddenly diagnosed with a chronic condition: ulcerative colitis.

It was the summer after my junior year in high school. I had just been in Iran visiting my extended family. After getting back to the States, three-quarters of the summer had flown by. While my fellow cross-country teammates had been training every weekday morning, I was spending time with family in Iran---I was surely going to have some work to do to get back into shape.

 After getting back to the States, I was sprung right back into the hard-working routine of a student-athlete. It didn’t help that “cross country camp” started on the weekend after I got back. This camp is when the whole team goes to Brown County State Park in Indiana, sleep in tents for a couple nights, and run miles and miles and miles through trails cutting through Hoosier National Forest.

 Of course, camp was a blast, as usual. Being with my teammates, playing football, listening to music in the woods, enjoying nature; what a time! But this ended up being an interesting experience for a number of reasons.

First, I got stung by a bee on my first run at camp. The welt grew quite large for a normal bite. The bite was on my calf, so when I ran, I could feel it sweltering painfully. Not off to a great start, this weekend. Then, one night, we were playing two-hand-touch football, and Eric (goddamn it, Eric) elbowed me in the mouth, making my mouth bleed. Two for two on bad luck. But it doesn’t stop there. It rained all weekend, and my friend and I were sharing a tent that wasn’t as waterproof as the packaging described. Everything I packed became soaked.

 At the end of the day, all of these predicaments were slight hiccups in life. They frustrated me at the time, but I grew past them, and now, I can tell funny stories about that camp. There were a lot of great experiences, too, like playing Mafia and watching the Mafia win in a game of 80 players, telling scary stories around a campfire, and more. But, this trip came with one thing that is more significant than all the rest. Something that I will not grow past---or, if you will, outrun (get it?). Let me tell you what that was.

The bathroom system in Brown County isn’t the cleanest. But you make do. One morning after a run, I went to the bathroom. After I finished, I notice that my stool has a lot of blood in it. I become worried. Maybe that hot dog I ate last night had some sort of pathogen in it? Or maybe I swallowed a bug while sleeping? Was that “bee” that stung me actually poisonous? Thoughts were racing in my head, but I decided to postpone my worries until after camp was over. After all, that’s a pretty embarrassing thing to say to a coach. In addition, I had no idea what this symptom meant. Never had I heard of ulcerative colitis or anything of the sort. I just thought it was some sort of infection.

 I eventually returned home and told my family. They took me to a doctor. I ended up getting a colonoscopy. From camp to the colonoscopy, I don’t really remember how things went. I don’t know if I did research and figured it out. I don’t know anything. But I do remember some things. I remember being on the trolley and looking around, seeing that everyone else there was old and I was the lone teen. I remember the GI doctor coming up to me after the procedure and telling me the results. “You have ulcerative colitis,” he said.

 I said, “What’s that?” And he explained. I don’t remember everything that he said, it’s all a blur. But I do remember one thing he told me: “It won’t go away. It’s chronic.”

 My mom started tearing up. Granted, my mother is very emotional, but I can get why she felt this way. My older sister has CHARGE syndrome, a very rare genetic syndrome that leads to a number of complications. My sister had to fight so hard against her disabilities. She was predicted to be unable to talk, walk, or eat on her own. Now, she can do all three. I am beyond proud of her. But that’s not the point. The point is, my mom had to go through a lot finding out that her first-born daughter has a genetic disorder. I had good health for my entire life, and when my mom heard that her other child also has a health condition, albeit much less severe, that will never disappear, I couldn’t imagine the emotional toll it took on her.

“I don't remember everything that he said, it's all a blur. But I do remember one thing he told me: ‘It won't go away. It's chronic.’”

 For me, however, it didn’t set in. I have a chronic condition, now, I should’ve been thinking. I didn’t think too much about my diagnosis. This doesn’t seem like a big deal. I didn’t realize that ulcerative colitis was going to change my life.

 I was 16 at the time. On October 26th, 2017, I turned 20. It’s been about 3-and-a-half years since I was first diagnosed. During these next years of my life, I graduated high school and began my collegiate career at Indiana University. I was a completely normal college student, balancing academics, extracurriculars, and friends. But I wasn’t like the other normal college student. I was balancing my student life with my “chronic condition life.”

My flares came and went. Medication after medication, failure after failure, side effect after side effect. Occasional triumph in remission. Figuring out what caused the remission. Before I knew it, it was back to a flare. Failure. Failure. Failure. I couldn’t seem to find an adequate treatment to keep me in remission. Even though we live in such a technologically advanced world with incredibly inventive medical innovations, my condition was unsolvable. It was like I was a puzzle that couldn’t be put together. I always thought, with the current state of medicine and technology, and the miracles you hear about it the news, my small problem should be easy to fix. But it turns out that life simply is not that simple. I spent multiple hours a week taking the public bus to downtown Indy so that I could go to appointments with my physicians (since Bloomington doesn’t have as good of doctors). Since medical offices are open during the typical workday of 9AM to 5PM and that’s when my classes were, I had to miss class quite often. This was hard, to say the least. Missing class. Having to catch up. Having to sleep. Having to stay involved. Having to put on a facade that nothing is wrong with me. It was hard. I look back and am proud of myself for getting through it, for sure. But wow, it was tough.

 

“I was balancing my student life with my "chronic condition life." My flares came and went. Medication after medication, failure after failure, side effect after side effect.”

 

Now fast-forward to sophomore year of college. I am still struggling to find the optimum medication. I have gotten most symptoms of my flares to subside, but some persist. I have a new doctor. I have new friends who have chronic conditions and can help me with advice and suggestions to deal with the symptoms. I am starting to come to terms with the chronic condition, and, while not letting it define me, am comfortable with letting it be a part of who I am. This all culminated in the Health Advocacy Summit on October 21st, 2017.