Wake up, fumble around on your bedside table to turn off your alarm, roll yourself out of bed and get dressed just in time to catch the bus for your 9:00 a.m. class. Wait… Let’s try that again. You wake up to the almost deafening sound of your fourth alarm and inch yourself out of what feels like the comfiest bed in the world. You feel remainders of the aches you felt yesterday in every inch of your body, and for a second you don’t feel the headache that lingers all over your skull on a daily basis. You take the first round of pills, most of which will make you drowsy and confused for the full day. You remember that assignment due two weeks ago and your brain can’t think of anything to do but cry because you can’t remember the email address for your professor or what the syllabus looks like. Upon finally getting to your afternoon class (you registered in them because they could be scheduled around doctor’s appointments and treatment schedules), you see your peers gazing at you in empathy, because you just look like any other late student.
Being a university student is a frustrating and tricky task to navigate. This isn’t the experience for every student with a chronic illness, but it is for many. The Spoon Theory, written by Christine Miserandino, is what countless people suffering ‘behind the scenes’ with an illness rely on to best describe their experience to family, friends and other people who love them. In the piece, Miserandino explores the concept of how to describe how they feel on a daily basis. Using spoons as a metaphorical object of measurement, those with a chronic illness (also sometimes referred to as “spoonies”) describe their energy levels and ability to tolerate everyday interaction based on their illness’ effects and symptoms.
For people, or more specifically students with an illness, it can be increasingly frustrating to have to explain certain things over and over again to questioning peers, such as why you use a mobility aid or appear unbalanced when you look ‘perfectly healthy.’ It also becomes frustrating when you have to cancel on social engagements because you’re feeling too sick to go out or you can’t do something because you have a treatment scheduled for that day.
I don’t claim to speak for every student with a chronic illness or accessibility needs, but I speak from a place of frustration. To those who are involved in our lives daily, we love you and we appreciate that you care and are curious about our illnesses. We encourage you to ask questions and become more aware to gain more of an understanding. All we ask is that our needs and accommodations be respected when we can’t do something or have to do something in a different way than you do. Simply don’t judge a book by its cover because although some of us may not ‘look sick’, it doesn’t mean we aren’t struggling on the inside on a daily basis to cope with something that affects every part of our lives.