Lessons I've learned as the sibling of a person with ulcerative colitis
Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon."
-Crohn's & Colitis Foundation of America
My brother was diagnosed with ulcerative colitis when he was in fourth grade and I was in seventh. Writing it down in one sentence like this makes the whole ordeal seem so trivial, as if it was a simple discovery the doctors' pulled out of a hat on the first doctor's appointment. Anyone that has suffered from a chronic illness will tell you, that's not how it works. At first, there were a lot of trips to the hospital at two in the morning. I would wake up to the sounds of either my mom or dad leaving and the other waiting at home with me. My brother was typically dehydrated when they made it to the hospital, but there was nothing the doctors had to say other than it probably being food poisoning or the flu.
The doctors thought it was a severe case of lactose intolerance after that. That was a fun one because my mom cut dairy out of the entire family's diet for a few months. Then my brother was hospitalized for the first time. Since they had no idea what was wrong, the doctors thought it could be a rare infection. They refused to let me into his hospital room without wearing a yellow hazmat suit. It was quite the fashion statement. I remember walking into the hospital room for the first time and experiencing a sensation of true helplessness. My brother was hooked up to so many tubes and looked like a skeleton. His eyes were sunken in and he just looked defeated. What was worse were the looks on my parents faces. As a kid, there's nothing more terrifying than seeing your parents looking as scared as you feel.
Finally, my brother was sent to a children's gastroenterologist and at the age of 10, he had his first colonoscopy. That was the first time our family heard the words ulcerative colitis. Since then, my brother has been hospitalized multiple times and recently had his large intestine completely removed.
wanted to give you this back story because I'm about to tell you the positives that have come out of my family's experience with UC. Colitis and its nasty cousin, Crohn's, will never be blessings. However, I think it's important to realize you can learn a lot of lessons about life through something as harrowing and awful as a chronic disease. Watching my brother's long and constant battle with colitis has taught me more than I could ever imagine, While the whole thing can feel like a curse bestowed on our family more times than it feels like a lesson, I want to share some of the things I've discovered over the last nine years of my life as a sibling of a person with ulcerative colitis.
I will always have faith in humanity. There's a simple reason for it too. Every time my family has been faced with hardship because of my brother's illness, people from all over have stepped up and helped. Sometimes it's a family friend stopping by our house with a casserole so we don't have to cook after spending the day at the hospital. Other times it's an aunt or uncle calling from miles away just to check in and see how everything's going. Then there are the people that have no actual connection to us outside of ulcerative colitis, like a past patient who makes tie blankets in her free time for other kids suffering with the disease. My brother still has the one he got during his first hospital stay. More times than not, people have shown me that there is more good in this world than we often give it credit for. Nurses are seriously some of the most kick-ass people you will ever meet. I'm giving a shout out to all the nurses that have walked through my family's life. They can make or break a hospital stay and know way more about the patients than any surgeon or doctor. They know all of the logistics just like the doctors, but they also know the person behind the patient. They're able to figure out what'll make a patient tick and often become a personal cheerleader for the people that walk in and out of their hospital wing. I could never do what they do on a daily basis and I hold every last one of the nurses that have helped my brother over the years in the highest regard.
You are not always the most important thing in the world. Imagine being a pubescent, angsty teenager while your sibling is being diagnosed with a chronic illness. That was me and it wasn't pretty. I felt resentment towards the situation and then guilt for feeling resentment at all. It took at least two or three years for me to really accept how little control my brother and parents had over the hand our family was dealt. I'm not proud of how much anger I felt towards my family early on in my brother's diagnosis, but as an adolescent I didn't know how to handle something bigger than my own agenda. I've learned over the years that sometimes you need to put your own ego aside to help the people you love. If that means you need to clean the house for your mom because she can't be home, then throw on some fun tunes and get cleaning. If that means your parents can't afford to get you a car because the medical bills are too high, learn how to enjoy walking-- it's better for you and the environment anyways. I'll never be a saint and still feel resentment and anger about the situation from time to time, but now I know how moments of selflessness can make a negative experience better for those around you.