Work and Cystic Fibrosis

“Sounds like someone has a case of the Mondays,” is a fairly well-known phrase, especially in the working world. It’s an acknowledgment of the fact that weekends are too short, and the first day of the workweek always shows up too soon after the end of the previous work week.

The phrase is commonly used jokingly in disdain of work in a general sense. However, in a strange way, as someone with cystic fibrosis, I look at it in a different way now. I view it as an achievement of a sense of normalcy. After all the hard work I put into school and medical treatments, staying rigorous and diligent has paid off and allowed me to lead a professional life on par with that of my peers, which is significant for me.

Working with cystic fibrosis

I’ve been working, in one sense or another, for nearly 20 years now. Growing up, I was fortunate in that my CF didn’t require hospitalizations or extended treatments that prevented me from performing daily activities or attending school and other events.

I had time to babysit from ages 12 to 16, and at 16 I started working at the local movie theater. That job lasted for almost 7 years, all the way through my college career and up until I got a salaried position. I never really appreciated it at the time, but those years were valuable for much more than the spare change I was able to keep in my pocket to buy comic books with.

Balancing work and cystic fibrosis

My early jobs taught me how to manage life with CF when life started to expand beyond just school and sports. I had to learn to be more efficient when doing my treatments, which are by far the most time-consuming part of daily CF health maintenance. If I didn’t get things done in a timely manner, I would be directly affected by earning less money. I learned to remember pills I needed to take and be mindful of time while still focused on work to make sure I was taking medications when I needed to. The alternative was to skip pills or a treatment or not work as hard doing a treatment, which in my mind could never be an option. Health always had to come first, and everything else would just learn to fit in behind it.

The lessons I learned about balancing CF with my work life would start to become important when, during my summers off from college, I was fortunate enough to work as an intern for a few different companies. Suddenly, I was commuting and working 9-5 from Monday to Friday every week over the summer, and again I needed to learn how to adjust my life to allow the time needed for doing what was required for my CF maintenance and keeping up with my work schedule. It was a difficult adjustment. I did not enjoy my time working at my internships, but I took with me the important lessons about balancing work and cystic fibrosis that I would rely on from my college graduation until today.

Building a career

Growing up, one of my major life goals was finding a stable job that had good health insurance. Having relied on my parents for most of the money in my life and all of the health coverage for 22 years, I wanted to be able to stand on my own and manage it all myself, and subsequently allow them to relax and focus on other things.

I was able to achieve that goal a few months after graduating college. I earned a job at a large company and moving out of the family house. At that point I faced another test: would I be able to manage my health from top to bottom, without anyone physically around to help keep me focused on staying as healthy as possible?

My first role at the company had me traveling 3 weeks out of each month for a year. I was really learning by heavy practice the best ways to travel through many different domestic airports with all the equipment and medication I would need each trip. Luckily, most of the rest of the job consisted of working from home. This gave me ample time to work while doing treatments and increase my daily exercise. During my time working from home, I haven’t felt better in terms of my CF in my adult life.

Overcoming work obstacles

Unfortunately, all good things must come to an end, and I was laid off from the company after 6 years. I found a role at a startup after that, at which I continue to work today. I look forward to work every day, but I now spend almost 2 hours a day commuting by car, which obviously eats away from time I could spend doing treatments or exercise. In the current job, my exercise and social life has been significantly impacted for the worse. However, using all the experience I have gained over the years and through my different job experiences, I was able to stick it out and find success in my career.

I was transparent about my condition when I began work at the startup. I made sure to let them know that there was always potential for me to have unexpected flare-ups and needs to stay home for extra care. I never took advantage of that, nor asked for any additional concessions. I would even stay late or come in early when I felt up to it, to build trust and credibility as someone who wanted success for the company. That has certainly helped to make things easier when I need to make a doctor's appointment with short notice, or feel an infection or illness coming on, and I need to take some personal time.

In summary, balancing work and cystic fibrosis is a tightrope walk; it requires patience, attention to balance, focus, and plenty of practice. Of course, it is different for everyone, but I hope sharing my experience can help others look at phrases like, “Sounds like someone has a case of the Mondays,” in a new, more positive light.

Tell us about your experience in the comments below, or share your story with the community.