This post was originally written for Girls With Guts’ online blog. Girls With Guts is a nonprofit organization seeking to empower women with Irritable Bowel Disease (IBD) and ostomies. Find the original post here, and consider supporting Girls With Guts or the Hermansky-Pudlak Syndrome Network.
(description: photo of me wearing a striped sweater and distressed denim overalls, holding a latte against a brick wall)
College is a time of transition and self-discovery. There’s no other time like your undergraduate career that you can try a variety of different clubs, meet people with similar beliefs/interests, and learn something new by being immersed in diversity, all while getting a degree and becoming a “real adult” to find a career.
However, for many students with Inflammatory Bowel Disease (IBD) (also called Crohn’s Disease, colitis, etc), college can also be a time of acceptance and re-acceptance of your condition.
While you no longer have to sit through classes for eight hours of the day like in high school, no one will force you to go to school like your parents did. As one of my professors reminded us in lecture last week, “College is completely voluntary. in fact, you’re paying to be here, and you come by choice.” Exams are stressful, your GPA will rise and fall like the tide, and you constantly question why you’re pushing yourself so hard for a piece of paper. So, if you’re chronically ill, have a medical device or take 42 different medications, why would you choose to do it?
I can’t answer that question on behalf of every chronically ill student, but my answer is: because we’re trained to survive.
I have a complicated rare disease called Hermansky-Pudlak Syndrome (HPS) that involves albinism (lack of pigment in hair, skin, and eyes, often resulting in legal blindness), a blood platelet clotting defect, and, in some cases, IBD around fifteen and pulmonary fibrosis around thirty. I was diagnosed with Crohn’s Disease when I was fifteen, between my freshman and sophomore years of high school. Although my doctors always said my case was very mild, it progressed quickly, and, coupled with my platelet clotting disorder, caused a lot of internal bleeding. I ended up having a total colectomy just shy of eighteen and two weeks after my high school graduation as a result of six hemorrhages and nearly fifty blood product transfusions in five short months. Two months after that, I started my freshman year at Ohio State with my new ileostomy, setting out to get my BS in Computer Science and Engineering.
I say all this not to gain admiration. However, due to the nature and progression of my illness, I was essentially incapacitated from February-June of the year I started college. As soon as I had recovered from surgery, I wanted to taste the world; I craved life and so badly wanted to feel like a part of society. I tried everything, went to football games alone because I didn’t know anyone but refused to miss out, and even rushed a sorority three weeks after removing my rectum.
What’s my purpose with all this? It’s just to say that life is a delicate balance, and college is the perfect place to learn that. Although I spent about two years medication free, I was recently re-diagnosed with another Crohn’s-related complication and have been reflecting on “sick” times and “healthy” times. I’ve re-learned that while chronic illness never leaves you, you have a very small amount of control on what you do in the time you’re given. If you’re feeling “healthy,” seize the time you have and try anything and everything. Otherwise, if you’re feeling “sick,” take the time to step back and give yourself what you need. Celebrate small victories, grieve losses, practice self-care and acknowledge your emotions. Still push yourself to maintain relationships with people who “get you,” and consider being part of a support group to remember you’re not alone. And, when you do graduate after 4(+) years, with maybe some stop and go, you can hold your piece of paper and say, “I’m a warrior, and I’ve learned to push hard and pull back, move forward and pause, laugh and cry, pass and fail, thrive and survive, and I’m not going down without a fight.”