I’m ambitious, often regrettably so. I take 18-hour semesters, pile on extracurriculars, work two jobs and publish my journalism, writing and poetry. I’m determined to stand out, because at the end of the day, I’m just another résumé in a pile. When I get the opportunity to get more experience, I jump at it. But no matter how much effort and hard work I put in, my illness still wins.
At six years old, I was diagnosed with polyarticular juvenile idiopathic arthritis. It’s a chronic autoimmune disorder that manifests in the same ways arthritis would: painful joints, damage, inflammation and stiffness. I’ll have it my whole life; there isn’t a cure. When it rains, I’m in pain. If the weather changes too quickly, I’m in pain. If I move too much I’m in pain, and if I don’t move enough I’m in pain. I can’t win.
According to the Arthritis Foundation, arthritis is the leading cause of disability among adults in the United States. Psychiatric conditions, particularly depression and anxiety, are common in patients of arthritis. Among adults with arthritis, at least one in four has work limitations.
What constitutes being a hard worker, being a productive member of society, isn’t fair to those of us with arthritis. When I miss class due to an arthritic flare, even though I have disability accommodations, I’m put at a disadvantage. I look like I care less. I miss out. I get behind in classes. At many of the jobs I’ve worked, my bosses and managers have gotten angry with me over something I can’t control. A guidance counselor in high school called me a liar and a manipulator, and told me that I’d never graduate. I get scared to speak up because I don’t “look” disabled or sick. One person not believing you is devastating; that person having power over you is infinitely worse.
I’m not the only person fighting to live a normal, respectable life with an invisible illness.
We have to start accepting that not all disabilities look the same and that they don’t determine a person’s worth. My inability to come to class on a rainy day doesn’t make the points I brought up in a discussion less thought-provoking. Not being able to climb stairs doesn’t make my writing less awarded. Being so stiff I can’t get out of bed doesn’t make me any less passionate about all the work I do.
So maybe it’s time to stop caring as much about the “traditional” aspects of hard work and start looking at the product. Because I’m sick of letting my illness win every single time.