Working with chronic illness doesn’t always look like a 9-to-5

In the past three decades of dealing with unpredictable health issues, a pain point has reared its head over and over again for me. After countless conversations with other chronic illness warriors, I know it’s an ongoing struggle for many: employment and financially caring for ourselves.

The constant struggle for balance in this area is fueled by numerous factors, such as flare and remission periods of our disease, daily symptoms that we have little control over, and a world that seems to spin on the axis of a 9-to-5 work schedule.

The mental and emotional seesaw of finding meaningful work that provides financial stability is at times made worse by a lack of understanding by employers and peers. They may not realize that even if we look OK on the outside, we may feel terrible. In addition, we often need flexible schedules because of treatments and doctor appointments, as well as much-needed rest days.

All of these things combined can make employment seem like an overwhelming battle. The following are things I’ve learned from my own struggles in this area.

Recommended Reading

January 22, 2024 by Margarida Maia

Buildup of TLR7 protein in immune cells may be among lupus triggers

Our career may not look like what we’d originally planned

This truth was probably the most difficult for me to accept years ago. I spent years in college working my way through an undergraduate chemistry degree and then a bachelor’s nursing program. During my last rotation semester, my lupus spun out of control, resulting in a pulmonary embolism and a stroke. My college career — and career in general — died that day.

I spent the next few years either in bed or in the hospital. Thankfully, I was able to live with my mother and grandmother at the time because I needed constant care and help. In fact, we had a nurse who would come to the house three times a week to help me bathe and do some light rehabilitation exercises. During that time, I felt angry and bitter. Wasn’t I supposed to be the nurse helping other people?

After a few years — once I was more stable and understood that, in my current state, there was no way I could work in a hospital 12–14 hours a day — I returned to an old love: writing. With my educational background, I wound up becoming a health journalist and enjoyed that career for 15 years.

That’s not to say I didn’t face challenges; it took a lot of hard work and negotiating to get most news outlets to allow me to work part-time, or partially remote. And, trust me, before COVID-19 solidified that remote work was doable, it was beyond difficult trying to find employers who would allow it. Fortunately, several existed. Most of the people I worked for either had a loved one with a chronic illness or dealt with one themselves. In the end, I was still able to help people — just not in the way I originally thought.

If you are in the limbo state right now of wondering what your career path is, my advice is this: What do you absolutely love to do? Think about what you spend the most time researching or looking at online, what your hobbies are, etc. Then think about how you can potentially use that passion or skill at a job that allows you to work from home or set your own hours. Also, don’t try to reinvent the wheel. Take inspiration from other warriors who are succeeding in a similar area, but put your own original spin on it.

Don’t let the guilt and negative self-talk take you down

Some years I just couldn’t work — at all. I couldn’t even bathe myself. It wrecked me mentally because I put so much pressure on myself. Everyone around me was working and I felt like a failure. But the reality was that they weren’t battling an out-of-control illness like I was.

When the time comes that you may be able to work, remember that the strength, resilience, and unique skills you have learned while advocating for yourself and managing an illness will all be used in some way in your career journey. If the word “failure” pops into your head, remind yourself of how you battle each day and what a warrior you are.

No matter where you are in your current career situation, I want to remind you that having a chronic illness doesn’t diminish your worth or capabilities. Our journeys are different, our paces will absolutely vary, but that doesn’t make us any less valuable to the world.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.