This as-told-to essay is based on a transcribed conversation with Courtney Felle, a 22-year-old employee of a rare-disease nonprofit who lives in Washington, D.C. It has been edited for length and clarity.
In so many ways, the pandemic has been a nightmare for chronically ill and disabled people as they face higher rates of infection and death from COVID-19. But there’s been a slight silver lining — as employers were forced to figure out how to allow employees to work from home, we now know that virtual work is possible.
I love my work, and it’s definitely a success story for me, but I’m also endlessly exhausted by the balance of a 40-hour work week and managing my chronic illness — even while working remotely.
I’ve seen lots of workplaces offer hybrid schedules, where employees come into the office two or three days per week then work the rest of the week at home, but chronically ill and disabled people need more flexibility than that. I want to be able to wake up, realize that I’m having a pain flare or bad fatigue, and be able to decide to work from home that day without it being an issue.
These recent months of the pandemic have been nerve-wracking as a chronically ill person, because I’ve already seen the push to go “back to normal” and spend five days per week in the office. Some days, I wake up and just know that I have limited energy. Why spend it on a commute or getting dressed to go into the office?
Before the pandemic, I didn’t think remote work would be something I could fight for in my future positions. But now, I know that if a company doesn’t offer remote work, it’s a dealbreaker for me.
If a company doesn’t offer remote work, that tells me its leaders don’t understand disability, chronic illness, and the way ableism functions in the workplace. It says a lot about that company’s values, and it acts as a huge red flag before the hiring process even begins.
Being a chronically ill person living through a pandemic is exhausting enough. I don’t need to add a workplace that doesn’t make accommodations into the mix.
As people push to normalize the pandemic, I do worry that the accommodations I’ve gotten used to — virtual events, remote working, and digital work materials — will vanish.
When I was in college pre-pandemic, I thought I wanted to work in electoral politics. But as I reflected more on my life as a chronically ill person and saw all the entities I had to fight with for access and accommodations — my college, medical providers, and insurance companies — I started gravitating toward disability studies.
I did a few internships focused on disability history and policy, with the goal of working at a nonprofit in the disability space.
Managing my pain and chronic illness while working is hard, because most 9-to-5 work is designed around able-bodied people. I’ve been thinking about going into more flexible work options like freelancing, but then, there’s the question of financial stability.
The reality of being a chronically ill person has changed my career path in so many ways, including abandoning my hopes of working in electoral politics. I’ve also become a lot more radicalized in my politics throughout the pandemic, because I’ve seen how cast aside disabled and chronically ill people have been.
In a way, that’s made it harder to figure out what happens next career-wise because I’ve been so disappointed by the reactions of organizations that I used to hope to work for.
Not only is flexibility possible, but so many people would benefit from it. Now that I know how it changes my ability to handle my chronic illness, I won’t go back.
I hope other chronically ill and disabled people are given the option to work in situations that work around the needs of their illnesses instead of forcing themselves into schedules that exacerbate their illnesses and diminish their ability to care for themselves.
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