Balancing full-time work while living with a chronic illness isn’t something you can plan for—it’s something you learn as you go. When I was diagnosed with pulmonary fibrosis (PF), my daughter was 5 years old. I was working full time and had no idea how I’d manage everything. I felt overwhelmed, uncertain, and scared of what was ahead. That shifted when I met other women living with PF. Each approached it slightly differently, but they were living their lives to the best of their abilities. Their example helped me believe that I could figure it out too—and I have, one day at a time.

Here are five tips that have helped me manage juggling my responsibilities while living with PF:

1. Get (and stay) Organized—Relentlessly

When you’re managing doctor visits, infusions, and follow-ups with multiple specialists, it’s not enough to be kind of organized. I rely on a physical calendar, my online calendar, and the one on my phone—yes, all three. It might sound like overkill, but when your memory isn’t what it used to be (which is especially true when managing illness), backup systems become your lifeline. Color-code appointments, set alerts, write things down. It might take a few extra minutes each day, but it saves your sanity in the long run.

2. Be Present—It Matters

When you don’t know how much time you have, every moment matters. I try to be fully there for my daughter—volunteering at school, going on field trips, or just watching her swim without my laptop open. I don’t get it right every day (there are plenty of times I’m working from the bleachers), but I try. I work for myself, so I have some flexibility—something I don’t take for granted. If you can, make space for those core memories. They’ll mean more than the unchecked emails.

3. Find a Way to Escape—Even If It’s Just in Your Head

I don’t quilt like some of the amazing women in my support group, and I wouldn’t call myself crafty, but I do love a good murder podcast. Finding something that’s just for you—reading, watching a favorite show, gardening, whatever—can help quiet the constant hum of daily life. You spend so much time thinking about everyone else. Give yourself permission to mentally check out and take breaks regularly.

4. Prioritize Mental Health—Your Way

There was a stretch of time when I was in a really dark place. I tried therapy, and it didn’t work for me—but antidepressants did. Sometimes it’s a hot bath. Sometimes it’s saying no to plans. The point is: you matter too. If something feels off, address it in a way that feels right for you. My outlook has changed a lot since those difficult months. I don’t sweat the small stuff as much anymore. I simply don’t have the energy to.

5. Build (or Find) Your People

Having a chronic illness is a different kind of loneliness. Well-meaning people can’t always understand what it’s like to celebrate getting a handicap placard while simultaneously mourning the fact that you need one. My support group has been essential—people I can talk to openly without worrying I’m “bringing them down.” Whether it’s a formal group, a close friend, or an online space—finding people who get it is huge.

I also do my best to stay as active as I can. My goal is simple: to keep doing what I can, for as long as I can—without pushing myself too hard.

These are the tips that help me—and I hope you find what works for you. Living with PF isn’t one-size-fits-all. Give yourself permission to try, adjust, and do what feels right for you.

Interested in joining or leading a support group? Learn more today!

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About the Pulmonary Fibrosis Foundation
At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.
As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.