Why I Finally Started Calling Myself “Chronically Ill”

Why did it take so long to call myself chronically ill? I’ve had debilitating migraines since I was a child. I had cancer in my early 20s. And a car accident left me with a traumatic brain injury, the effects of which still ripple acutely through my life more than two years later. There were times when I dipped my toe into the waters of self-identification. When I started grad school, I had only been cancer-free for two months and still had to take medication regularly. I emailed each of my professors and told them that I had been sick and I was getting better, but if they saw me taking medication in class, that was why. (Now I wonder why I felt like I had to explain at all.) Most were affirming and supportive, but one took me out of class during a quiz and told me that if I was in need of accommodations, I might want to think hard about whether now was the time to be in a strenuous graduate program. I nodded, fighting back tears. When class ended, I hid in a bathroom stall and cried because that professor had said my own worst fears aloud. What was I, a sick person, doing in grad school? How was I going to make it through? I was devastated then but I’m angry now. I hadn’t even been asking for accommodations. I was just telling her that if she saw me taking medication in class, that was why. And even if I had been asking for accommodations, that didn’t mean I couldn’t hack it in grad school. Critically, there is a law, Section 504 of the Rehabilitation Act, that protects disabled students from discrimination and requires that schools remove barriers to learning.

Years later, at the job I later had to leave, I tried again, however feebly, to advocate for myself. But I wasn’t ready to push for what I needed because that would have meant accepting how sick I was. At that time, I was still dreaming of a day when I would wake up without pain. If I were to hold on to that dream, on which so much of my mental health relied, I couldn’t push for accommodations. When a trusted supervisor gently suggested I might apply for disability benefits, I balked. I wasn’t disabled. I couldn’t take benefits meant for people in much worse positions than I was. Although I was sure I wouldn’t apply for benefits, I looked up the legal definition of disabled: “an individual who has a physical or mental impairment that substantially limits one or more major life activities.” It was a strange, shattering moment when I realized I easily met the parameters of that definition. But I wasn’t ready to contend with what that meant for my life so I swiped the page away and cleared my search history.

I’m not the only one who found it difficult to look my sickness in the face and talk about it with other people. Becca, a 32-year-old with Crohn’s disease among other related issues, couldn’t bring herself to discuss her disability with the resource center at her university even though colleges are legally obligated to offer accommodations. Because of that understandable hesitation, she missed out on accommodations that would have made school more accessible for her. “But I didn’t want to share what was happening, probably because of a combination of humiliation and a bit of pride,” she said. “I really feel like accepting my disability was like going through the stages of grief and denial was a big part of it. Then, anger and depression. Finally, acceptance, about a decade or more later.” Aparna Nair, PhD, a professor of history at the University of Oklahoma who studies disability and public health, says it’s understandable that people may be uncomfortable claiming, acknowledging, or accepting disability. “Society tells us we should be ashamed, silent, and in denial about our differences, rather than look it in the eye and choose how others talk about it to us,” Nair said.

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