IPF Interviews: Rebecca

Rebecca was diagnosed with IPF in January 2021. I reached out to her for a Q&A, to learn about her experience with the illness, and hear her inspiring story of success, optimism, and positivity.

Q: “How has IPF impacted your daily life? Your life overall?”

A: “I think everyone will have the same response along the lines of profound sadness and shock being diagnosed. After a year of being in a dark place, I took control of my disease. I stopped drinking, I started taking better care of myself, I advocated for better care, started a small support group and now am an advocate for the PFF. I remember daily that I am sick but I’m not “dead” … as terrible as that sounds the idea of “not today” is what keeps me going. This disease might shorten my time here with my family and friends but it’s not today. That’s something my husband said to me once and it’s become my moto. I own my own company and I’ve learned to not let the stress of that get to me - I make sure to prioritizing my mental health along with my physical health. As far as day to day, I keep it as normal as I can. I have a daughter who wants to do swim team, basketball and taekwondo and I make sure she’s able to do everything she wants without mommy having to slow things down.”

Q: “What’s one thing that has helped you stay positive while managing PF?”

A: “I think I’m lucky that I’ve been stable so that keeps me positive but also learning more about the disease, the whole thing was so scary and overwhelming and things really took a turn when I finally accepted it and learned more about it, it’s not an automatic death sentence and lung transplants can help us. 

I’ve met people that have had transplants and are living full lives and I’ve met people who are 15+ years in living with this - so the more you learn and the more people you meet it gets easier to hope for a future and stay positive.”

Q: “Whats a milestone or achievement that has brought you joy during your PF journey?”

A: “I think the most exciting was hosting my first support group meeting. It felt very lonely for a long time - like in physical therapy I didn’t feel like I could relate to anyone. Most were retired and talking about grandkids and I was answering work emails on the treadmill and scrambling to pick up my kid on time from kindergarten - I also found that there are A LOT of online groups that aren’t uplifting and a little toxic so I ended up asking my Dr about support groups for younger women and she told me I should just start it -  I was so nervous that first group, thinking no one would show up but thankfully some gals did and I just had our 1 year meeting. It’s still small and I’m still working to grow it but I’ve met

some wonderful women and we’ve had some really great connections, sharing our journeys.”

Rebecca’s PF journey is truly inspiring. While being an advocate for the disease, she runs a support group for younger women, manages her own business, and balances motherhood. Her “not today” is so refreshing, emphasizing the importance of living life fully, for as long as possible, despite the diagnosis.

“I refuse to let this disease slow me down, the day I physically cannot do it, that’s when I’ll consider it.”

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Disclaimer: This content is for educational purposes only. It is based on personal experiences and perspectives and is not direct medical advice, nor should it replace is. Consult a doctor for further clarification and questions.