Hidradenitis Suppurativa and Higher Education
When I was applying to colleges, I had no idea that I would go on to develop Hidradenitis Suppurativa. I often wonder if I did know, would I have applied to other schools that were closer to home and were more welcoming to chronically ill students? If I’m being honest though, back then would not have even known what to look for in schools in terms of academic support for chronically ill students nor would I have even known who to ask.
During my first year of college, the only doctor that I had was back home, 800 miles away from where I went to college. I did not yet know how to manage my flares and I was scared whenever a new lump or lesion developed. This led to a constant need to leave school and fly back home for several days to receive treatment and to make the pain bearable.
My school couldn't accommodate my needs
Although learning to manage my condition was difficult, the challenges I faced because my school was not set up to accommodate my needs due to my HS were avoidable. During my first quarter of college, I had to fly home in the middle of the week because of a large flare-up. Due to this, I would be missing a quiz for my calculus class. Although I emailed both my professor and my academic advisor about missing the quiz as soon as I knew that I would have to fly home, my professor refused to allow me to take a makeup quiz a few days later when I returned. My advisor, who had been previously made aware that I had HS, was powerless in changing my professor’s mind.
Another terrible experience
I wish I could say that this was the worst experience that I ever had with a professor, but a situation that occurred during my second year of college really takes the cake. About mid-way through the quarter, I started to have a very painful flare that would not go away. It would send pain radiating down my arm and across my chest.
Through the pain, I went to my biology class because I knew that I could not afford to miss any lectures since the class had bi-weekly quizzes that made up a large part of our grade. At some point during the class, when I winced due to the pain, the professor thought I was making faces at the jokes he was telling. He ridiculed me in front of the entire class, and so I reported him to the department head. I told her about HS and how uncomfortable the professor made me feel. Without asking me, she forwarded my email to the professor, with ultimately nothing coming of it.
A week later, the pain in my chest from the build-up in my undrained lumps was so painful that I thought that there was something wrong with my heart. In the middle of the night, I went to the emergency room, where I found myself in a hospital bed writing an email to that professor and my academic advisor at 4 am because I had a quiz in that professor’s class in two days. He told me that going to the emergency room was not a valid excuse for me to have a makeup quiz. My academic advisor was once again powerless.
Being supported shouldn't be difficult
Attending college with HS can be difficult, but being supported by your school shouldn’t be. Through my own research and through taking various classes on higher education, I realized that the experiences that I went through with having HS accommodated were sadly more commonplace than I initially thought and were more reflective of the system of higher education not being created for students like me than my abilities as a student.
In spite of this, however, there are some ways to counter this system. I learned that because of my HS, I was able to qualify for make-up test dates as an academic accommodation under the Americans with Disabilities Act (ADA). This created some more obligations on behalf of my professors and the university at large to accommodate me, and it made the world of a difference in terms of managing my HS. Not everyone will necessarily qualify for accommodations, and the process of getting them can be tedious, but I think it’s worth a shot.
Students with chronic conditions, like HS, are invaluable members of academic communities, offer unique perspectives and life experiences, and deserve to feel supported in their pursuit of a degree. Providing accommodations for our flares and doctor's appointments seem like a good start.
Where did you first hear about hidradenitis suppurativa?