BY MADELINE HANDLEY
Madeline Handley is a third-year Molecular Biology student at Colgate University, who has learned how to navigate a college environment whilst managing lupus. Madeline was diagnosed with lupus in middle school. She is sharing her experiences in a series of articles to benefit others in the lupus community.
My transition to high school went smoothly for me, and I eased into a routine packed with academics, athletics, music, and friends. I involved myself in activities such as cross country, the orchestra, and learning sign language, balancing these with the higher standards for learning presented by my new classes. My lupus was still active, but nowhere near as impactful on my daily life as it was in middle school. I was able to fully participate in cross country, running several miles after school with my peers and competing in meets almost every week.
I was determined to remain active and involved despite my lupus and the side effects I experienced, such as fatigue, rashes, and soreness. In retrospect, I’ll admit I tended to push myself too hard as a result of this determination. I often failed to set boundaries for myself. I chose to ignore my illness and pretend like I was a completely normal kid, which wasn’t true and set unrealistic expectations for my abilities. As I grew up and learned to manage my disease, I accepted that I was different, and that having those different needs was okay. But in the beginning of high school, I was still very new to lupus and hadn’t quite given myself enough grace in that aspect.
For example, during the fall of my freshman year, I began receiving Rituximab infusions. These would require me to stay in the hospital for hours and miss full days of school. Those tiring and slow-moving days were spent catching up on the work I’d be missing and playing cards with supportive friends who would come visit me. Often after those treatments, I’d return to the track, pushing my body to perform in anticipation for the next cross country meet. I would refuse deadline extensions that were offered to me by my teachers who knew about the treatment I was receiving. I was insistent upon being a normal student and not needing extra support. Breaking out of this mindset was a slow and difficult process that took many years, but I’m happy to say that as a college student, I no longer feel this way.
I also had a 504 plan in place in high school, which was a plan that outlined the daily issues I faced because of my lupus and mitigated the impact those issues would have on my academics. This plan confirmed that I could receive accommodations in the event that my lupus was impacting my ability to go to class and complete schoolwork, which was useful for days in which I had Rituximab infusions or for days in which I was feeling too fatigued or ill to come to class. I was thankful that I had the flexibility that I needed from my school district– although I rarely allowed myself to use it. My teachers all knew about my plan, and were generally extremely supportive and accommodating, giving me extra time if I needed it.
However, there were occasions when I did have to be more assertive when it came to my needs. These moments were very uncomfortable for me, and oftentimes I would get into disputes with my parents about my inability to speak up for myself in order to get the accommodation that I needed. Once, there was an instance in which I was unable to participate in my gym class due to issues related to my lupus. My 504 plan excused me from this type of situation and protected me from any grade reduction; however, my teacher was unclear about my plan and didn’t know much about lupus. When I was unable to participate, I often received failing grades for the day and my grade in the class was very low as a result. This situation was very stressful, and after weeks of problems, I came to the point where I had to call in a 504 meeting to formally discuss the issue with the school administration. My teacher quickly realized how serious lupus was and all resolved very soon after the meeting. I was content with the outcome, but frustrated that I had to go so far as to educate my teacher and urge for my needs to be addressed.
High school presented new academic challenges that interfered with my lupus management. It was the first time that I had to become a true advocate for myself and communicate with teachers about my lupus and my accommodations. I soon realized that this responsibility was not limited to a high school environment, but would also be something I had to think about in college and beyond. With this consideration emerged a newfound desire to become more involved in the greater lupus community in Chicagoland. I began participating in walks hosted by the Lupus Society of Illinois my freshman year, even giving a speech or two in high school and involving my parents and family. It was heartwarming to see people come together for the disease and to realize that I wasn’t alone in my struggles. Up to this point, I was the only person with lupus that I knew, which was isolating. Seeing a crowd of lupus patients and their families reminded me that I do have a community all around me, even if I couldn’t see it.