My ninth-grade algebra teacher looked down at me under her spiked eyelashes, frizzed blonde hair and deep eye wrinkles, and breathed the five words I cannot stand to hear: “But you don’t look sick.”
I had just explained to her that I spent the week in the hospital, and that the administration excused me from the math quiz I missed.
She assessed my round cheeks, thin shoulders, and chipped nail polish, and repeated her piercing words. “You don’t look sick at all.”
I dropped my head, washed with shame. I knew, by her tone, that she was accusing me of lying, of faking a disease I had no control over. Tears plopped to my thigh. Suddenly, I felt responsible for missing school. I should have pushed through my flare up; I should not have told my parents; I should have taken that quiz.
After all, if no one could see my sickness, maybe it was all in my head.
I have experienced comments like my teacher’s countless times since. I generally answer the same way: no, my lupus is not visible. You cannot see how my white blood cells attack my joints, my legs. You cannot see my overactive nerves zap down my back when I have a fibromyalgia flare up. You cannot see my arthritis.
You also cannot see my anxiety, my depression, the pain I feel when I walk up stairs.
When someone thinks of the word disability, of chronic bodily sickness, they think of physical limitations that you can easily see. They think of people in wheelchairs, people with canes. But, believe it or not, visibly disabled people are arguably the minority of the disability community. The majority live in secret.
My mother works with adults with disabilities, and I have witnessed able-bodied people treat them with utmost kindness, beyond hate or judgment. I have witnessed sensitivity, compassion, and friendliness toward them. So while there are still ableist people and policies out there, I have not witnessed their impacts particularly strongly; however, I cannot say the same for people who are plagued with chronic, invisible diseases.
Visibility does not define disability. In my experience, people’s sensitivity to secret sicknesses, autoimmune disorders, mental illnesses, arthritis, and other chronic conditions has decreased or remained stagnant. People are not taught to treat seemingly healthy-looking people with compassion; they are not taught that they do, in fact, exist.
Invisible conditions are not acknowledged in classrooms, so observers rely on their sight. Based on a glance, observers assume that the people around them are healthy, that they can do anything. Well, I cannot do anything. Just because you see me as healthy, does not mean that I am. The way you see me does not define me.
The reason why secret sickness is so convincingly invisible is because people with disabilities taught themselves how to be high-functioning when they should not have to be.
Since I was diagnosed at 11 years old, I taught myself how to blend in. Even after my mother injected me with my weekly dose of chemo, I still went out with friends over the weekend. I learned how to hide my sickness, which made it difficult for people to be sensitive toward my condition. After all, if no one knew about it, how could they be empathetic?
This is the core of the problem: ignorance toward secret sickness is caused by those who keep it a secret. We do not tell people because we are afraid of judgement, pity, and others’ fear. We cultivate this ignorance toward ourselves because, deep inside, we want to be “normal”—I do, at least.
I believe people with mental illnesses want the same. For instance, I often swap my anxious emotions with my roommate who has depression. I walk into the dark room and almost always see her lying in bed, awake, yet unmoving. Her depression chains her to the bed most days, but when you see her in class, you would never know. She is in the honors program; she gets good grades; she is high-functioning, but she is not healthy.
Sickness comes in so many forms, but when I go through the disability line at a theme park, I do not want to be accused of taking advantage of the system, and I do not want to apologize for my lack of looking diseased. No one else should, either.
Does Rollins address invisible illnesses adequately? Yes and no. Rollins tries, but it does not always succeed. For instance, I called to make a CAPS (Counseling and Psychological Services) appointment at the beginning of this month, and the only open date that worked with my schedule was Feb. 25, more than three weeks hence!
There are also extreme accessibility concerns when it comes to buildings on campus, which have been and will continue to be addressed in The Sandspur.
At the same time, though, the fact that Rollins even offers a free counseling program is admirable, and the fact that the Office of International Programs checked in with me before my spring field study was heartwarming. So, at the moment at least, I am torn.
Rollins prides itself on its inclusivity, but I encourage students to evaluate whether that holds true or not for them. The student perspective is invaluable on a college campus, especially at Rollins.
If nothing else, I hope this article opens up your eyes to the possibility of empathizing more with others. You never know if your friends’ own bodies are attacking them; you never know if your friends are living with constant pain; and you will not know unless you try to.