By Anonymous.
This is the latest in my ongoing series of volunteered guest posts by Black women and other WOC. These posts will be going up on Wednesdays in 2020.
I saw an article online once that called people with a chronic illness “spoonies.” It said that people with one or more chronic illnesses have a limited amount of energy, or “spoons,” to spend each day. Whether you spend your spoons on taking a shower, grocery shopping, or completing some other vital function, once they’re gone, they’re gone.
I’m a spoonie. I have aggressive endometriosis, a condition that produces varying symptoms in each person. With endo, uterine-like cells live all around the body instead of just in the uterus. My appendix, liver, diaphragm, ovaries, and intestines are covered in these cells. Endo causes a myriad of problems, not least among them, pain. For me though, the most challenging thing about having endometriosis isn’t managing pain. It isn’t that I’m constantly running out of spoons (although that certainly is true). It’s that every single day, as my spoons rapidly deplete, I’m constantly trying to hide the fact that I don’t have more.
For a person who spends most of her time rationing spoons, working in academia is tricky. Don’t get me wrong, I love being a professor. It’s my dream job. I’ve always thought of academia as a place that revolves around the exchange of ideas and the pursuit of knowledge. However, once I got on the tenure track, I realized it isn’t my job to pursue knowledge. It’s my job to produce it. And if, as a tenure track professor, you can’t produce knowledge quickly and consistently, you have very little value.
That task seems easy on good days, when I feel I can conquer anything. I teach, advise students, maybe run a committee meeting, and still get loads of writing done when I get home.
But.
Some days are nothing like that. Some days I wake up… and I can’t move. I take medicine. Sometimes it kicks in, sometimes it does nothing. Sometimes I cry for hours. Sometimes as I lay there, I use Instagram or Spotify to distract me from the pain. And I hope to God it doesn’t last long, because pain flares are so intense that I can barely think. Which means I don’t write or revise anything. I don’t grade. I don’t review journal articles. I don’t lesson plan or rework my classes so that they’ll be better next semester. I am not productive.
In addition to managing the physical challenges of endometriosis, I have to navigate systematic obstacles. Like all disadvantaged groups in higher ed, those with a chronic illness must prove their competence despite institutionalized prejudice and bias. I knew revealing my invisible illness would have consequences.
As my illness progressed from an inconvenience to an encumbrance, I faced a dilemma. Do I tell my colleagues and superiors about it?
I didn’t know if I wanted to deal with the drawbacks. My mind went through a series of what ifs:
· What if my superior (chair, dean, provost) withholds opportunities because they think I can’t handle them?
· What if they give me opportunities, but I can’t handle them? I’d feel ashamed that I let them down.
· Since I’m Superwoman some days and a blob of jelly on others, what if people think I’m faking? It wouldn’t be the first time people didn’t understand why my capacity changes from one day to the next.
· Many people don’t understand the chronic nature of chronic illness. What if, after years of seeing me struggle, they lose faith in my ability to complete long-term projects? What if their misgivings affect my tenure case?
I couldn’t stand the idea of people dismissing my capabilities based on my illness.
So I told no one. Still, my choice had its own consequences. Among the things I dealt with:
· People wondered, aloud, why I didn’t take on the same load as everyone else.
· People said I was flaky when I took a longer time to finish projects.
· I sometimes overestimated my ability and took on more than I could handle, then later had to retract my commitment.
· I was always hiding signs of my illness. I buried a stack of heading pads under my desk, I excused myself when I needed to take medications, and I snuck breaks just to sit down and relieve pressure from my body. Sometimes, on painful days, I closed my office door and curled up on the floor instead of going home (I didn’t want to create a record of leaving frequently- nor did I want people to see what I looked like when I was in pain. I am lucky I was never caught).
Most importantly (to me):
· I used all my spoons to keep up the appearance of healthiness and productivity at work, but then I had none left for my spouse and child.
Eventually, I couldn’t hide my chronic illness anymore. My flares became too frequent and too intense. Plus, I needed procedures that would render me unavailable for weeks at a time (and we all know unavailability in academia is a no-no).
I finally told my chair and a few key people. I had been terrified to speak up, but some good things happened:
· I found out I wasn’t the only one. Others had been hiding health issues, too.
· I was able to extend a few deadlines because people understood why tasks might take me longer.
· My chair was, or at least seemed, really understanding.
I’m happy about my decision to reveal my invisible illness, if only to a few people. No, things aren’t perfect. The “what ifs” I listed above, along with other obstacles, do sometimes occur. Moreover, I know any drop in my productivity level could change my colleagues’ tone from a warm, “tell us if you need anything,” to a fed up, “listen, I know you’re sick but-” Consequently, I don’t always reveal the extent of my pain or the sparseness of my energy. Nevertheless, it feels good to be done with the extreme maneuvering it sometimes required to hide my health issues. I refuse to waste any more spoons convincing people that I’m capable. I’ll let my work do that. Overall, I think I made the right choice.
This is so so so relatable.
I have made the choice not to cover mine up (as sometimes I haven’t had the option), and it has been both a relief and incredible frustration, as now when I *am* productive, people assume I am “feeling better” (forgetting the chronic part) AND as one of few out disabled/chronically ill faculty on campus, am often put on committees and other service opportunities to represent this population…which then triggers more flares and exhaustion.
Thank you to this author for sharing her truth.
Solidarity,
Fellow spoonie