Last updated: December 2021
As I'm sure we're all well aware -- and honestly, probably sick of hearing -- >Crohn's is an invisible illness. This is something that I’m used to repeating to people, especially when working to get proper accommodations in a workplace or at my college. And yet, it’s still not something I’ve entirely taken to heart.
I have a long Crohn’s journey, one that started in 2009, just a few days after my ninth birthday. I’ve transitioned medications many times, from Pentasa, steroids, Remicade, Entyvio, Stelara, to now Humira. All of this has made me well acquainted with how to advocate for myself as a patient, student, or worker; though over the years, I find myself struggling to accept that I’m a person who needs accommodations.
Crohn's affected my mobility
I’m the kind of person who likes to, as my mother always says, “set the world on fire.” Wherever I am, I get involved in my community as much as possible. But to do this, I usually need a certain degree of understanding from the people around me. This came to a head this year. As I headed back to college for the first time since Covid started, I found myself mid-flare: completely exhausted, no appetite, excessive bathroom trips, and intermittent pain. One of the symptoms I wasn’t expecting was how much my condition affected my mobility. I could barely get across campus, and I found myself skipping class from sheer lack of energy to get from building-to-building.
At the advice of my doctor, I was able to get a handicap accessible parking pass. This completely changed my life; I went from skipping almost half of my day’s activities to going to nearly all of them. Still tired, I was struggling -- but at least I was there.
Then came something I didn’t expect… the guilt. The handicap spaces have a little wheelchair figure on them. I don’t have mobility issues, I told myself. The individual parked next to me was on crutches. I’m taking up their spaces, I told myself.
I realize now, I am deserving of help
I wish this was something the Crohn’s community -- from patients to doctors -- were more open about. The struggles with coming to terms with needing accommodations is not something anyone had ever talked to me about before. It took a few weeks of using the pass, and getting all of the benefits, for me to come to the realization that I am deserving of help. Just because you can’t see my pain doesn’t mean it’s not there. If something as simple as a seat closer to the door, a bathroom card, or a handicap pass will change my life -- why should I deny that?
I’d love to hear any words from anyone else in the community. How do you accept your status? Do you get enough help for yourself?
Does living with IBD impact you financially?