What It’s Like Working With a Chronic Illness

Author: Alex Haagaard
Source: The Muse

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.

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