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Respecting Self and CF with Time Management and Healthy Boundaries

By Xan Nowakowski

When I was asked to join the Board of USACFA earlier this year, I ardently wanted to say “yes”. But I paused first and asked questions. Since the start of the COVID-19 pandemic, I had been busier than ever before—which is really saying something. There had already been many times this year when I had cut things close with my health, winding up with severe infections that took weeks to control and constant pain in my kidneys. I knew I could only have so many years like this one before CF finally began controlling me instead of me managing it.

At the same time, this was a summer of tremendous impact both in my paid job and all of my advocacy work within the CF community. I somehow managed to make it all work and learned some lessons along the way that helped me prioritize my health more. USACFA seemed like the biggest opportunity yet to make a difference for other adults with CF. So, I let myself explore how I could commit to this exciting leadership role without harming myself in the process.

Managing time is often the easier part of setting healthy boundaries around any activities you are doing. Some tips nonetheless:

o Maintain a task list—keep the things you have agreed to do planned out and updated as circumstances change

o Calendar carefully and use naming conventions for different types of activities so that you can balance your days instead of having six different back-to-back activities that require a lot of engagement from you.

o Start and end every day having read and filed all your messages. If something needs follow up, make sure you put it in your task list! You may also find it helps to use collaboration apps like Slack and Microsoft Teams to communicate more easily.

When thinking about committing to something new, take the time to envision how it will work—and see if you can adjust the dates on your task list in an obvious way to accommodate activities for the upcoming few weeks. If you find that you are able to map out time for upcoming activities without compromising either your other work or your time for rest, taking on a new role may work out well! Otherwise, tread very carefully.

I often encourage people to “work smarter, not harder” and try to live by this principle myself. However, I need to point out that this advice can turn very bad very quickly if interpreted in capitalist ways. People are not machines and should not be expected to try to cram more and more activity into smaller and smaller units of time so that we can take on endless responsibilities with no regard for our own peace of mind or overall well-being. Rather, “working smarter” is about using technology wisely to help us make the most of the time we do spend working, so we feel less burdened in the process.

All of this applies doubly for people who experience any kind of social disadvantage. We understand how quickly responsibilities can create situations in which we must work twice as hard as our colleagues while fighting against our own oppression. So, another piece of advice: If someone suggests that you thoughtfully saying “no” to something means you somehow see yourself as being too good for that task, you may need to remind yourself that you have the right to set boundaries on your own time.

Often the harder part is respecting our own time rather than simply managing it. “No” is a complete sentence. We need to practice saying it early and often, and also practice thinking about why saying “no” may be our healthiest choice in a given situation. One thing that often helps is thinking about the *impact* of your time in a potential new activity, not the quantity of it. Prioritize those activities through which you can make a big impact without spending huge amounts of time in meetings. Work that you can do on your own or collaboratively using asynchronous communication is often easier to accommodate.

And of course, think about the fact that CF will happen no matter what. Don’t waste your time or disrespect your health with wishful thinking about CF taking a back seat during times when life is especially busy. As many of us know, times of heightened activity are often the most dangerous for our CF management. So, hang a lantern on this right away, and consciously ask your potential collaborators how they will handle those situations.

A lot of us have also seen how saying “no” to anything can feel like a betrayal of the adherence that is pushed so hard on us as CF patients. We often want to do service work in the CF community even more fiercely because we are treated like we don’t contribute to the world in other ways. This simply isn’t so, but we can still internalize this message easily if we do not actively fight against it. Remember always that your life is a gift and so is your time!

So, I’ll leave everyone with this piece of advice—a “Pearl of Wisdom” if you will. Use your time with organizations where health and well-being come first. This will not only support you in setting healthy boundaries but also actively facilitate setting those boundaries.

This same principle helped me make wise choices in thinking through my involvement with USACFA and ultimately accepting the invitation to join the Board.USACFA’s motto is “health comes first”—and our leadership were able to tell me a lot of specifics about how that works in practice. Current members of the leadership team explained how workflow adapts as CF changes and nobody has to step back forever because they are in the hospital for a month.


About the Author: Dr. Alexandra "Xan" Nowakowski is a medical sociologist, public health program evaluator, community advocate, and peer counselor living with cystic fibrosis. They are the newest directors of USACFCA as well as the author of the column "Pearls of Wisdom" in CF Roundtable. Born in December 1983 with very rare CFTR gene mutations, Xan had a long and complex road to a conclusive CF diagnosis despite being sick since birth and having their first sweat test in early childhood. Xan works full-time as an Assistant Professor at the Florida State University College of Medicine looking at connections between health and social life, and exploring how programs for people with different health conditions work.

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