“This disease doesn’t define you.”
This is a well-meaning piece of cliched advice that I’ve gotten countless times over the years. I’m sure that if you’re reading this, then you have too. While it may be true that Crohn’s disease doesn’t define me, it is a big part of my life. When my parents, doctors, friends, and family told me something like this, I thought it meant that my IBD would and could exist in the periphery of my life. I was diagnosed with Crohn’s 10 years ago, and that has never been the case. It wasn’t until about a year ago that I finally accepted that to be true. My resistance to my reality hurt me much more than it helped me.
So, if this “oh yeah I have IBD but it’s no big deal” narrative sounds familiar to you, then read on. The most helpful thing you can do for yourself as a college student with IBD is accept that this illness is a big deal. And guess what, that’s ok! We can’t run from what is hard for us, we can only face it.
When I first got to school, I thought I’d be fine. I was in remission, and I was determined to make any flare in symptoms insignificant in my life. Sure, I had some tough days in high school and weird medicine side effects and symptoms, but I’d be fine.
I met with my professors, but I was embarrassed to be meeting with them in the first place. I felt the need to explain myself and let them know that “I'm doing well now so there shouldn’t be anything to worry about.” I didn’t want them to see me as weak or as less intelligent or dedicated than other students. It’s honestly still an internal dialogue that I struggle with. I tried my best to organize my schedule so that I didn’t have class or I had very little class on the day of my Remicade infusions. But even though I didn’t have class, it wasn’t a day of rest. Getting Remicade looked like hopping in an uber to commute thirty minutes to the hospital, sitting there all day, ubering back to my dorm room, and being exhausted when I got back. While in the infusion chair, I often thought about my friends who were back on campus attending class and going about their days as usual.
I quickly learned that I couldn’t just make a wish upon a star and make my IBD disappear. I was not comfortable accepting the inevitability of the challenges that IBD would present. Around the end of my first semester, I started to experience some symptom complications and an increase in medication side effects. This persisted on and off until the end of my sophomore year at school. For the duration of that time, instead of asking for help, I blamed myself for not being able to manage my disease better. I’ve since learned that sometimes, unfortunately, it doesn’t matter how well you manage your IBD. The nature of an auto-immune disease is that my body is going to do what it wants to do sometimes, whether I give it my permission or not.
After all of that difficulty, I learned a few things, and I’d like to share some of that with you.
Get comfortable asking for help. That’s what being an adult means and not just an adult with a chronic illness. It means biting the bullet and asking for help and doing it before the proverbial shit hits the fan. It’s a great idea to build a relationship with your class dean or with a professor early on in your time at school. It’s so helpful to have an adult on campus who can offer advice and help advocate for you when you’re too tired to do it yourself. This includes getting to know the people who work in the accessibility office. They will be your people when you need it! Also, get yourself a therapist. I’ve been seeing a therapist since I was seventeen, and I wish I started going as soon as I was diagnosed. It’s so important to have someone to talk to who I know won’t judge me.
Find community. This is a big deal. You may be used to having family and friends at home who understand your illness and know how it works. These are people you don’t feel like you have to explain yourself to. College is new and different and people have questions. Sometimes the questions are stupid. Sometimes they’re difficult. In many ways that’s the purpose of this website, but one of the biggest problems with IBD is that too many of us deal with its challenges alone, and it’s a huge thing to carry by yourself. In the past I’ve attended a support group for women with chronic illness. My life also got significantly better when I joined online communities on facebook or instagram. There’s a lot of funny IBD meme content, believe it or not.
Learn how to set boundaries. This includes setting boundaries with yourself and others. Learn what your limits are and respect them. If you absolutely need 8 hours of sleep to function, then get 8 hours of sleep. With others it means giving them the answer you actually want to give them. If someone asks if you will do them a favor and you are simply not up for it, then politely tell them no. If someone wants to hang out and you really want to but you know you need to get this assignment done, then tell them no. Your energy is precious. Spend it how you want to as well as how you need to.
Accept yourself. Do you judge yourself for having ibd? Really ask yourself. Because if I never did, I would never have felt ashamed of turning in an assignment late or missing a class or not having it in me to go out one night. I felt a desire to “fit in,” and I thought I had to bend myself to fit into the mold of what other people wanted. Once I started setting boundaries, I learned that there are so many people who love me for who I am and who are happy to support me when I’m feeling great and when I’m not. I have friends who want to learn and understand my Crohn’s disease. You deserve support.
There are times when you’re gonna feel great, like I do right now. And there are going to be times when you’re gonna feel absolutely awful. Yes, you’re right. It is hard. Yes, you’re right. It is unfair. But you know what else it is? It’s reality. What good does ignoring that really do for you? Be your biggest supporter, the person who is most patient with yourself, and build the network for yourself that you deserve. Good luck out there, kids!
Thank you so much for this! I'm almost 20 years into my diagnosis and JUST TODAY was railing on myself for being exhausted. My wife was like: "You have a chronic illness and are on a million medications to manage it; of course you're tired!" But there's a part of me that still insists on seeing it as some kind of moral failing. So glad to have a community to rely on in these moments.