By Alex Haagaard
It’s 6 AM 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 twelve 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.
Why It’s So Hard to Work With Chronic Illness
In many cases, chronic illness limits how much you can get done in a day. You start with limited energy levels, and when you add in things like chronic pain and immune problems, everyday tasks can drain your batteries before you even get to work. (Not to mention that doctors’ appointments and endless phone calls chasing after prescriptions and referrals can take hours out of your day.)
Learning to manage your energy levels is essential when living with chronic illness. You get used to checking in with your body, assessing how much any activity will cost you, and creating a kind of energy budget to figure out exactly what you can get done without pushing your body past its breaking point. But what happens when there’s just no way to balance the budget?
This is a huge challenge in workplace cultures that place a premium on constant productivity. Chronically ill employees often end up going into energy debt trying to keep up with what’s expected of them. Pushing your limits is often seen as a way of committing to your own personal development, but it can have a serious negative impact on your personal life and health, especially if you have a chronic illness.
Caitlin has fibromyalgia and currently works from home, but she used to work in retail. “My quality of life at the time was non-existent,” she says. “I couldn’t do anything except lie in bed or on the couch when I wasn’t at work. I couldn’t even job hunt because the pain and fatigue were so severe that I couldn’t think straight. I ended up quitting with nothing lined up.”
Chronic illness is also unpredictable. It’s one thing to manage your finances when you know how much money is coming in every month, but as any freelancer will tell you, making long-term plans becomes a lot more difficult without that certainty. Similarly, when you’re working with chronic illness, you often find yourself in a position of having to create weekly or monthly energy budgets without knowing what resources you’ll have at your disposal from one day to the next.
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.
“To be uncomfortably honest, I am probably more disappointed in myself than [others] are,” says Kristina, a designer and digital modeler who has epilepsy. Struggling with even the most basic adulting tasks can leave her riddled with self-doubt, she explains: “One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth or getting dressed.”
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 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:
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