How Chronic Illness Affected My Education
In a previous column, I explained that I was diagnosed with mycobacterium abscessus — one of the deadliest infections for cystic fibrosis (CF) patients — in my junior year of college, and how that was one of the many times that my chronic illness affected my education.
I was absent from school for weeks at a time so I could receive intravenous (IV) medication at the hospital. But I kept up my studies, because I didn’t want to fall behind, although that meant teaching myself — attempting to learn geometry from a book, or perform a science experiment from my hospital bed. A day home sick from school was not a rest day.
This made the days that I was actually present in school overwhelming and stressful. I put way too much pressure on myself to make a good impression, especially knowing I could be absent again the next day. I was expected to keep up with my classmates, despite not having a tutor, and yes, this included knowing the choreography for dance class. I struggled with certain subjects, such as math, because I didn’t have a good foundation in it.
My reputation as “the girl with mono, or something” meant no one knew the real me.
I wonder if what I experienced is what children are feeling during the latest COVID-19 variant outbreak, having to school themselves from home with no consistency or confidence in themselves? In both cases, the loss of social interaction has been significant.
It’s why I saw college as my chance to start over. And I did. I made a point of being transparent about my disease right from the start. Admittedly, I did not want to be transparent, but it’s hard to hide a vest and a nebulizer in a 10-by-12-foot room. It turned out to be a nice change. My friends knew about my CF and still got to know me for who I was.
The drama didn’t end for me, unfortunately. I clearly remember returning to college after a lengthy tuneup in the hospital during my sophomore year and fainting in my dorm room shortly after arriving, leaving my roommates to find me and call my mother. Back to the hospital I went, clearly not ready to move past my “most likely to be absent” high school superlative. I played this game many times during my four years at Kean University, and my teachers received many emails that read, “My paper might be a few hours late.”
I’ve watched as many of my “cysters” and “fibros” talk themselves out of attending college, deciding they simply wouldn’t be able to make it work because of the severity of their infections. Even though I chose to push through with traditional schooling, there were things I would’ve changed. I would have known that I could still be a cool college kid, even if I had to do medications. I would have prioritized my health and not worked myself into the ground, which I’m sure contributed to my decreased lung function and the mycobacterium abscessus diagnosis. I would have advocated for cystic fibrosis when my clubs asked for fundraising suggestions, but I was too afraid of becoming “the disease girl who asks for money.”
The song “I Wish I Could Go Back to College” from the musical “Avenue Q” is an emotional lament with the show’s main characters sharing their college-related regrets: “Life was so simple back then.”
While I disagree about college life being easy, I understand the sentiment. I could’ve made things easier for myself. I should have asked a classmate to be my note buddy and help me get back on track when I returned to class. Why didn’t I explain to my teachers the extent to which my IV antibiotics were affecting my body and performance? I should have made my health my first priority. The list goes on.
COVID-19 has ravaged the country, and the educational system has been one of the hardest hit areas, revealing how little prepared we were to accommodate school students amid a public health crisis. I faced a similar situation throughout my own efforts to earn an education during my personal health crisis.
My hope is that students will be given the confidence, consistency, and accommodations they need through this trying time to help make their education easier. I found ways to make it work. I wonder what else I can achieve from my hospital bed.
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Paul & Debbie
We do what we do when we do it. No point or need to feel sorry for anything we did or didn't do. Apparently this is what happened. My career and choice of study have been affected by having CF, but also my myriad other things and circumstances that I know of, and many more that I don't know of or had any control over. This is how life goes. It is no drama.
On the forum this has come up a few times.
See https://cysticfibrosisnewstoday.com/forums/forums/topic/what-do-you-do-for-work/
and
https://cysticfibrosisnewstoday.com/forums/forums/topic/disability-employment-awareness-month-whats-your-story/
I guess I have been very lucky to be able to balance all circumstances the way it turned out. Of course, I did nothing of the kind: it just happened that way. I can only thank my Angels for doing a swell job.