3 lessons I learned as an employee with chronic illness
It’s 6 a.m. and your alarm is going off. You hit the snooze button, hoping for a few more minutes of sleep before you drag yourself out of bed. This is a morning routine most people are familiar with. But for workers with chronic illness, it can look very different.
Five years ago, I was working as a research assistant at a design school. I was also struggling with several undiagnosed illnesses, including narcolepsy, an immune condition, and a painful connective tissue disorder. Every night I’d set 12 alarms, turn the volume up, and plug my phone in on the other side of my bedroom. And every morning I’d sleep through them all. I started every day feeling like I’d already run a marathon and been hit by a truck as I crossed the finish line.
No, we’re not just lazy and incompetent
When your illness is invisible, you often face doubt from colleagues. Laura, a middle-school teacher with an immune disorder, also struggles with PTSD because of harassment she faced at her previous job.
“I was told I was being ridiculous and overdramatic, that I was ‘letting kids down and setting a bad example’ by not pushing myself,” she says. Even after leaving that job, that experience continued to impact her work relationships. “It took probably five years in my current position before I didn’t have anxiety attacks if my boss needed to speak to me or I needed to speak to my boss about something.”
When you’re chronically ill, it often feels like doubt rules your life. People doubt that you’re sick. They doubt how hard you’re trying. They doubt that you’ll follow through on your commitments. And eventually, you begin to doubt yourself.
When your abilities change so dramatically from one day to the next, you can end up questioning your own grip on reality. You know none of this is your fault, but deep down you can’t help but wonder if maybe, somehow, it is.
How I’ve made working, work for me
Three years ago, I had to stop working in my chosen field so that I could begin working full-time as a patient. And it was work, even though I wasn’t getting paid for any of it. My weekdays were suddenly filled with doctors’ appointments, lab tests, and phone calls to social services. I essentially had to become an administrative assistant to the six clinics I was dealing with, a biomedical researcher, and a health-justice advocate. Just like my previous jobs, I often felt like I was just barely treading water, trying not to drown.
Last spring, I finally received the diagnoses I was fighting for, and this fall, I went back to work as a consultant with a disability-led design group. Although I expected to feel overjoyed about returning to paid work, I’d become so used to struggling and failing that for weeks all I felt was terror.
But I’m still there, loving the work and starting to feel more confident that I can actually do this. I’m also realizing that my experiences with chronic illness can be an asset. They’ve made me conscientious about time management, connected me to an amazing community of disabled creatives, and given me insights into how public systems and services are designed—for better and for worse.
Here are three key things that have helped me succeed in my new job:
1. Learning how to manage my illness
This one was by far the hardest. It was also the most important for me because, without access to the right medications and lifestyle strategies, I just couldn’t work reliably. I was lucky to have understanding bosses and colleagues at some of my previous jobs, but even with their support, I couldn’t get all my work done.
For many people with chronic illnesses, it takes years to receive a diagnosis. For women with autoimmune disorders, the average wait time is 4.6 years. For people with rare diseases, it’s 7.6 years. For me, it took 26 years to figure out what was going on in my body and how I could manage it through a combination of medications, mobility devices, physiotherapy, and lifestyle changes.
2. Finding the right accommodations
Living with chronic illness is a learning process. Your body doesn’t work the way most do, so you have to figure out what makes it work better and what makes it worse. Bodies are complicated, and so are the environments we live in, so it’s not always easy to tell immediately what’s making you feel a certain way. Some accommodations will help you and some won’t, and you won’t necessarily know until you’ve tried them out. Even when someone has the same illness, what works for them may not for you. You get used to treating your body like a science experiment—until you figure out what’s most effective.
One of the most challenging aspects of seeking accommodations for chronic illness is that many of the things you need can seem like luxuries to other people. Sitting in a desk chair causes me pain, for example, and can even make my joints dislocate after a few minutes. At home, I have a chair with memory-foam padding on the armrests and seat and an adjustable footrest. Even so, I spend most of my day working in bed, propped up by mountains of pillows, and wearing leggings to reduce pressure points.
These are things I probably couldn’t get away with if I worked in an office. There are other advantages to working from home too. Astrid works in the aviation industry and finds that, with her chronic pain and fatigue, her commute is a major barrier. It can be hard to get a seat on public transportation if you’re young and not visibly disabled. The walk from a station’s entrance to the platform can be long and exhausting. The heat of a crowded subway car can trigger a fainting spell.
But avoiding such obstacles isn’t always an option. “I once handed my boss a letter from a doctor saying I need to work from home for a couple days a week, but he completely ignored it. Scoffed at it even,” Astrid says.
In fact, although the Americans with Disabilities Act requires employers to provide “reasonable accommodations,” many chronically ill people find that the accommodations they need are defined from the start as unreasonable.
Part of the problem is that disability rights legislation like the ADA only protects accommodations if they don’t cause the employer “undue hardship.” What an undue hardship is, exactly, is open to interpretation, and when your illness is invisible and your access needs are complex and change over time, they can be easier to dismiss.
Unfortunately, there’s no easy or straightforward solution to this. What can be most helpful is to connect with local disability-rights groups, and to develop support networks with your colleagues.
3. Building a support structure at work
Travis Chi Wing Lau is a gay Chinese-American academic whose disability causes chronic pain and cognitive dysfunction. He’s found that connecting with other coworkers from marginalized backgrounds has been invaluable.
“Rather than on a departmental or institutional level, I’ve had to find support in key colleagues that understand this experience,” he says. “Many of these colleagues are those from other marginalized groups—queer/POC scholars who actively navigate an academy that isn’t built for bodies like ours have offered invaluable advice and tools for someone in their early career like myself.”
I can relate. Working alongside other disabled people has helped me to regain some of my lost confidence. Because even with medications and an adaptive work setup, I am still chronically ill. There are times my symptoms will flare up in response to the weather or stress. I get things done, but I can’t always get them done on a rigid schedule.
Knowing my colleagues will understand if I disappear for a few days has made me feel more able to take time to rest when I need it—which has made it easier to get my work done when I’m feeling well. That trust has been the most helpful accommodation I’ve found—trust that I’m doing my best, that I’ll get my work done even if it takes me a bit longer, and that I have something valuable to offer.
What we can learn from all this
It can often feel like work has no place for chronically ill people. You’re slow and unpredictable. You’re low-energy. Dress shoes, suits, and uniforms cause you pain.
Work is changing, though. Remote work is becoming more common and accepted. I’m based in Toronto and connect every day with my colleagues in New York and San Francisco by email, text message, and video call. As digital environments change the ways people work and interact with each other, I’d love to see workplaces rethinking what it could look like to have chronically ill employees. What if accommodating chronic illness became a starting point for creating more comfortable and flexible working environments that would benefit everyone? What if accessibility were seen as a way to build workplaces that are truly welcoming and inclusive?