A student asked for someone closer to the panel to push the button for the second floor. The person next to me huffed and puffed, shooting the student a disapproving stare, as if the extra 10 seconds would ruin his whole day. Why did it matter so much to him?
I thought about the times I’ve taken the elevator to the second floor—I have a chronic pain disorder that causes moderate to severe pain in my muscles and joints, and sometimes even one flight of stairs can seem like Mount Everest.
But I looked just like that girl, the one exiting the elevator followed by rude looks—no crane, no crutches, no wheelchair, because my disorder is an “invisible” one.
It shouldn’t really matter what floor I or anyone else takes an elevator to, but it’s also important to take into consideration that things aren’t always as they appear. People who look fine aren’t necessarily so.
“We get that a lot,” said Lauren Highsmith, the student services coordinator for Temple’s Disability Resources and Services department. “‘He or she looks fine,’ or ‘They don’t look sick.’”
Highsmith often acts as a liaison between students and professors. She’s heard from professors about students with invisible illnesses. Though most are willing to make accommodations, Highsmith said having an “invisible illness,” or a condition without noticeable physical attributes, can complicate matters.
“They just assume because they don’t see someone in a wheelchair or with a seeing-eye dog that this person is fine and they’re not sick,” Highsmith said. “It’s not even just for a chronic illness. It can even be just for a learning disability.”
This occasional unwillingness to validate a student’s illness can make their time in class even more difficult, she said. Some students are afraid to approach their professors if their illness isn’t physically visible, Highsmith said, and those with rarer illnesses worry professors won’t understand exactly what they’re going through.
“It makes students even more hesitant to open up and explain,” Highsmith said. “It can also be embarrassing to talk about your bathroom needs or different parts of your body that are affected.”
Unfortunately, invalidation is a common cycle for those suffering with invisible illnesses, especially students. Our professors don’t believe us. Our bosses don’t believe us. Worse, sometimes even our family and friends don’t.
Elana Sorrin, a senior social work major, has had chronic migraines since she was 9 years old. She gets them in moderate to severe form just about every day.
“It kind of dictates my entire thinking,” Sorrin said. “When it’s bad, I can’t think or speak or coordinate myself.”
Despite what Sorrin goes through on a daily basis, people don’t always take time to understand.
“Most of the time it’s supportive,” Sorrin said. “But, I feel as though when it happens over and over again, people become unfazed by it. It’s like, ‘Oh, well, you said that already a few days ago that you were too sick to get out of bed. How do we know it’s real since we can’t see it?’”
Not everyone understands or is willing to take the time to understand what she’s going through. Instead, people downplay it. So Sorrin has to downplay it as well.
In my personal experience, this invalidation and downplaying leads nowhere good. Despite having strong support from some close friends and family, many others invalidated my pain, even some doctors. So I figured it couldn’t be that bad. I felt guilty for cancelling plans last-minute or making up multiple tests in high school. I didn’t—and, most of the time, still don’t—look sick.
But I am.
Today, when someone tells me I’m not, I just roll my eyes and walk away. But when I was 16, things were a little different, and I let other people tell me how much pain I was or wasn’t in—leading to an unhealthy dissociation with my own body I’ve spent several years working through.
There is undoubtedly a stigma against those living with invisible illnesses, an all-too-pervasive idea that something that can’t be seen can’t be real.
“They’re far and few between, but you do get some [professors] who are like, ‘No, I know they were absent, I know they missed a test, but I’m not letting them make it up,’” Highsmith said. “I think that if someone came into your class that had a vision impairment and a walking stick, people would be like, ‘OK, you missed class? Great. We’ll let you make up the test.’ But when you have a student who doesn’t look sick and says, ‘I wasn’t feeling well that day,’ they’re like, ‘Where’s your doctor’s’ note?’”
Sorrin constantly worries about being prepared, since she can’t just pull an all-nighter or do an assignment the day before like other classmates. Zachary Noel, a sophomore psychology major who suffers from Crohn’s disease, can be “fine one second” and “doubled over” the next.
Students with invisible illnesses need professors to not assume we’re fine because we look fine. We need our friends not to shame us when we cancel plans last minute. We need everyone on Temple’s campus to stop judging the girl who takes the elevator to the second floor. We need people to stop and think, because despite what we may look like, we’re not always all right.
But with some extra time, space and understanding, we’ll be OK. We are strong and resilient, sometimes to a fault. All we ask is that we do not become as invisible as our disorder.
Victoria Mier can be reached at firstname.lastname@example.org.