A letter to students by Dr. Keziah Tinkle-Williams, Residential Faculty, English, and Phi Theta Kappa - Alpha Sigma Nu Chapter Advisor
Dear Students Living with Invisible Illnesses & Diseases:
When I was first learning about MS after my diagnosis in 2015, the phrase “invisible disease” became a recurring motif. At first, I believed that my disease was invisible as well, until I had the realization that I just needed to know where to look, and most importantly, what I was looking for.
In the early years, I rarely shared my diagnosis with my students as I was determined to show the world, my family, and most importantly, myself that I could soldier on and live my life as a normal person. Whatever that meant. To me, normal meant able-bodied, and I learned in time that mentality was only doing me a disservice. Trying to be “like I was before” or “just like everyone else” left me feeling alone and isolated. Students in my classroom felt the same way too.
Sharing my issues started slowly. Students with a variety of these so-called invisible diseases would start to rationalize and justify why they needed various accommodations, I started to simply respond with, “I understand. I have MS. Just let me know what you need.”
Every student responded with a sense of relief. Usually, the conversation progressed into an open conversation about the difficulties the had encountered trying to navigate courses while managing symptoms with lack of understanding or empathy because they “looked fine.” One student even had someone on campus yell at them for parking in an ADA spot, despite their placard. Others shared they felt instructors doubted their sincerity or that they were exaggerating their ailments. Because they “looked so good.” That is until you realize where to look.
“It’s nice to talk to a teacher that understands.”
If I feel vulnerable and isolated living with MS and trying to navigate an able-bodied world, I know that my students do as well. At first, sharing part of my own complications just navigating daily life in these personal conversations felt uncomfortable to me. I was not used to sharing such difficult, personal information about my so-called invisible disease with students. My students were not used to sharing so much with an instructor either. But as the nods of understanding and empathy progressed, from a descriptive phenomenological perspective, these students and I experienced a sense of kinship in these moments. We were not alone.
To the students sitting in classrooms managing a broad range of illnesses and diseases who feel as if they have been doubted and scrutinized because they “don’t look sick,” I see you. I hear you. And I understand the fight. Please, keep going. Persevere, as only you know you can. But, please, be kind to yourselves along the way. I also have a difficult time managing my MS in an able-bodied world.
Read other posts about life with MS by visiting drkeziahjenisis.com.
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