It’s been three years since I was diagnosed with Lyme Disease. Three years of seeing specialists, experimenting with antibiotics and homeopathic treatments, and experiencing relentless fatigue and excruciating body aches.
At first, I wanted to keep my chronic illness a secret. I didn’t want people to think I was weak. In hindsight, however, I think the real reason I kept my condition hidden was that I did not want to face the fact that I could no longer do the things I normally did.
My symptoms continued to pile on top of me like dirt on a casket, and this semester I finally summoned the courage to go to our campus’ Disability Resource Center (DRC) for help.
When I went to the DRC for accommodations, I thought I was seeking sanctuary. “Finally,” I thought to myself, “a support system.” Instead, I was sent on a longwinded obstacle course of errands.
What I needed was understanding from my professors in the form of a “flexible attendance policy,” allowing me to miss more than two classes without it penalizing my final grade. After extensive coordination with my doctor and the DRC, I was granted eligibility for a flexible attendance policy.
However, this accommodation came with duties that only I could carry out. It was up to me to print out the forms, fill them out with course information, track down my professors during their office hours and spend time with them to come to an agreement about my attendance. I had to do all of this while juggling my course load, writing articles for The Oracle and most of all, struggling with my Lyme Disease. Overall, getting help proved to be just another stressor on my already full plate.
I felt like I was bamboozled. Here I was, thinking that my chronic illness would be met with understanding and support, when really I was met with expectations of performing. Of course I don’t expect the DRC to hand out resources willy-nilly, but I was completely shocked to realize that I am responsible for doing all of the leg work.
I would be remiss if I criticized the DRC’s lackluster accommodations as a stand alone problem. The sociologist in me has to acknowledge that our institutions are tainted by social stigmas and cultural ideals. Despite my critique on the DRC, I believe the real problem is our expectations surrounding rest and performance.
In our capitalistic nation, we view rest as a luxury, a reward for a hard day’s work. We wear sleep deprivation as a badge of honor, bragging about how little hours of sleep we got the night before. We laugh at the mentioning of “free time” as if it is an elusive creature not found in nature. There is even a meme that reads “sleep, social life, school: you can pick two but you can’t have all three.”
America is obsessed with the virtue of work. This “hustle culture” that we are drowning in doesn’t treat us like vulnerable human beings, but machines perpetually shitting out essays, presentations and projects. I don’t think it is a coincidence that robots are replacing human employees. After all, robots can’t take sick days.
Our culture has made it increasingly difficult to take rest without specific intention. Rest has become confused with laziness. Those who work 60 hours a week are praised while negative assumptions are made for those who “only” work 40.
I find myself burdened by the constant worry of doing well and by the never-ending quest of proving myself. I mean, that’s the conveyor belt to nirvana we’ve been taught from the beginning: work hard, push yourself, perform, perform, perform and you will eventually succeed. You can always sleep when you’re dead.
No wonder I was afraid of appearing weak for admitting that I need rest and support, for not being on your ‘A’ game at all times is considered a weakness.
In reality, rest is a necessity, not a luxury. Rest grants us with a healthier body, more balance, fresh perspective, deeper relationships and less stress. It’s only when we get the appropriate amount of sleep that we can be our absolute best.
In the end, understanding and compassion should be applied to everyone, not just those with chronic illnesses. Until we realign our cultural ideals away from the crushing expectation of performance, I fear that we are headed towards a monumental mental breakdown. Sleep isn’t for the weak, it’s for humans.