I have always been someone who wanted to work. When I graduated with a degree in finance in May 2013 and started my first career job that September, I was pleasantly surprised to find that working 9 a.m. to 5 p.m. helped me become more compliant with my CF treatments than ever. The days I found myself missing a treatment were on the weekends when I wasn't on a schedule, and friends were asking me to hang out.
Don't get me wrong -- waking up was HARD most days and I felt exhausted a lot. But, once I arrived at work, I found camaraderie, meaningful work, and goals. I was glad to be there. Overall, work kept me motivated and on a great schedule.
When I was working, Monday through Friday looked almost identical. I'd wake up, do my treatments, go to work, come home, eat dinner, watch TV and hang out with my roommate, do my treatments, and go to bed -- like clockwork. Doing my lung care allowed me to stay healthy enough to work, and having a work schedule positively correlated with my CF treatment compliance.
Then, in June 2016, my health took a rapid and unexpected turn for the worse. I told my manager that I'd be back to work in one week. In actuality, I was out of work for 11 months. In just a few days, my lungs declined, and I was placed in a medically induced coma and connected to an external lung machine called extracorporeal membrane oxygenation (ECMO). I was immediately listed for a double-lung transplant, which I received just days later. I spent four and a half months in the cardiovascular intensive care unit (ICU) at Inova Fairfax Hospital, and did a lot of rehab at home after that.
Once I was able to walk again and my health started to improve, I frequently made comments to my doctors about how I wanted to go back to work. For a while, they said I wasn't ready. But finally, in May 2017, I got the OK to head back to the office. It could only be for eight hours per week, but it was something.
For two days a week, I went to the office for four hours. Then, I increased it to 10 hours a week in another couple of months. However, I was always stressed about appointments interrupting my work schedule.
I frequently thought to myself, “They have just given me 11 months off from work and now I need to change up my schedule, again, because of an appointment?” I felt guilty. When I'd call a doctor's office to make an appointment, the first thing I would blurt out was, “It can't be on Tuesday or Thursday until after 2:30 p.m.” Sometimes, the doctors only were in the office on those days and I'd spiral into, “Okay, how am I going to work this out with work?!” Because I was being followed closely by my medical team, I had appointments scheduled pretty much every week.
I continued to work 10 hours per week until mid-October 2017, when I spent six weeks in the hospital due to complications out of my control. That hospitalization made me realize I needed to focus on ME. I realized I needed to be 100 percent before I started working again, and that I was actually a little crazy for going back to work seven months after being discharged from my transplant hospitalization and less than a year after the trauma I had been through surrounding my transplant.
The decision did not come easy, though. I cried as I emailed my manager to let him know I wasn't sure when I could come back. But, after I pressed send, a weight was lifted from my shoulders. I no longer would have to worry about scheduling or feeling guilty on behalf of my company. I had to put my health first, no matter what.
For those of you making a similar decision, don't feel bad if you have to take time off from work. And, always prioritize your health! That being said, here are some tips that I found helpful while navigating the experience of working with CF -- from managing my schedule to deciding to take time off.
Some tips I have for those living with CF and working full time:
- Have a set work schedule, if possible. Do your treatments at the same time every day. Stay on a schedule.
- Don't overwork yourself. Working eight hours is an accomplishment.
- If you are not feeling well, call out. Missing one day of work is better than making yourself sicker and missing a week.
- Ensure your life isn't only work and treatments. Have some fun.
- Once you're hired, decide whether you will tell your coworkers that you have CF. I've always told mine and everyone has been so understanding. They don't even notice the coughing spells after a while … and no one will ask you if you're sick.
- Be deliberate about managing appointments. Schedule for the very beginning of the day, lunchtime, or at the very end of the day.
- Don't leave your health in the wind. YOU and your well-being are ALWAYS number one.
Some questions to ask when making the decision not to work:
- Is it getting in the way of your medical appointments/care?
- Is there any way to make both your career and your medical care work?
- Is your health declining because of work?
- Is it too distracting?
- Will work set you back in your recovery?
Ask yourself if not working is the right decision; you will know.