Working While Chronically Ill.

October 26, 2022
A Black man stands behind a Black woman with white butterflies on her face.

Image credit: CottonBro Studio

The workforce is inherently ableist, wherein people requiring alternate work arrangements are treated as a financial liability. With a range of intersecting and often invisible characteristics, employers are slow to open the doors of disability and chronic illness accommodations, fearing that they will lose profits with each request fulfilled. 

Why should we ALL care about this? 

Because ableism impacts more people than we realize and is the one form of discrimination from which no one is immune. The fact is that thousands of people each year acquire a disability or develop a chronic illness. 

FYI: Not all conditions are congenital. 

According to the CDC, "chronic diseases are defined broadly as conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both." For a deeper dive into this topic, I interviewed someone who asked to be identified as emojis and has been actively managing a chronic illness for 15 years. 

Question: What would you like people to know about living with a chronic illness? 

🤎🤎 I would like people to know that living with a chronic illness is really hard. Although I look well most of the time, I struggle with invisible symptoms like pain, fatigue and nausea. During a flare, my condition feels like having the flu for weeks at a time. However, unlike the flu, no amount of time or rest will heal my body; I have a chronic condition for which there is no cure. 

Question: How has having a chronic illness impacted your career and lifestyle? 

🤎🤎 Having a chronic condition has made it hard to hold down an on-site job with a 9-5, Monday- Friday work schedule. Before COVID, most organizations were reluctant to provide accommodations like working from home and flex hours. Hopefully, this attitude will change since the pandemic proved that people could work from home AND be productive. People who need to work from home are not lazy or looking for a free ride; we just need support to work around our challenges.

I did not find such support from my employer at the time of my diagnosis, so I left. It took some time, but I was fortunate to find a remote 25-hour/week role that I enjoy. However, a part-time job doesn't provide health benefits, so I depend on my spouse's income and medical insurance. As limited hours are available in this role, I am not in a position to fully support myself. I could find a different job, but that would come with other, more challenging trade-offs.

Question: How has earning less income impacted your relationship? 

🤎🤎 Thankfully we have a great relationship, and my partner doesn't mind the financial imbalance, and we approach our life together as a team. That said, working part-time has limited some of our life plans. For example, I had aspirations of "moving up the ladder," buying a bigger home, and travelling. Now, my goals are more practical and center around attending medical appointments, maintaining a proper diet, and holding on to the life we have built. 

Question: How does working from home support the management of your chronic illness? 

🤎🤎 By working from home, my mornings are much less stressful; commuting requires ALOT of energy. When I worked downtown, it took me three hours to prepare and commute to work; my route required three transit systems; I was exhausted when I arrived at work and still needed to put in a full day. I don't miss any of that.

Working from home, I can wake up 60 minutes before my day starts, do some stretching and allow my meds to kick in without the stress of being stuck on a highway or navigating large crowds. Before, I couldn't be my best which was not good for my employer or me. Working from home allows me to allocate my energy better. After video conference meetings, I can take a walk or nap during lunch. With flex hours, I can attend a 20 min doctor's appointment without using an entire vacation day or taking unpaid leave. People who need accommodations aren't asking for the world; we simply need space to navigate within it.

I consider myself fortunate; I have a work situation that supports my life. But, unfortunately, this isn't the case for many people; many companies prefer to replace chronically ill staff with new people who are "less trouble."

Question: How do you define success? And what is one of your long-term goals?

🤎🤎 For me, success is finding ways to engage with others in meaningful ways; I put a lot of effort into finding others who see and celebrate differences. My condition makes it hard to go out and be social, so the times I can connect with others are a success.

My primary long-term goal is to remain above the poverty line. I read somewhere that 1/4 of people with chronic conditions and disabilities live in poverty. That stat isn't lost on me; it keeps me up some nights. For this reason, I work as much as I can when I can. I likely won't ever be able to retire fully, but my goal is to maintain my current health level and stay as far above the poverty line as possible. 

Question: What words of support do you have for those who have chronic conditions? 

🤎🤎 I would like all people with chronic conditions and disabilities to know that they are not alone and that they are not broken. Capitalist systems that only value one's ability to produce are what is broken. Not being able to work in the narrow constraints of the workforce doesn't mean you are a failure. Unfortunately, we live in a world that shamelessly exploits workers and has f*cked up priorities.

Also, I would like chronically ill people to know that they don't have live "inspirational" lives. We don't have to run a marathon or climb mountains daily to prove our humanity. Overcoming unrealistic challenges for the entertainment and gaze of healthy/non-disabled people is not necessary for your life to have value. Forcing ourselves to live up to ableist standards is not fair. Today I was feeling well for about 8 hours, during which I gave this interview and washed all my laundry. These tasks won't make the evening news or social media rounds, but they are valid wins. 

For more on this topic, read Chronic Illness and Disability: Key Differences and How to Get Support.

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