Progressive Phenotype ILD: Effect on Personal Life

The effect of chronic fibrosing ILD with progressive phenotype on personal relationships with friends and family.

Transcript:

Dawn Repola: There’s nothing like getting diagnosed with a rare chronic disease to show you who are the really great people in your life and who are the folks that maybe you don’t need to be around. Some of my friends couldn’t deal with my diagnosis, and those folks I had to let go. That was OK. Other people actually showed up—friends who I hadn’t had contact in a while started showing up—and it was wonderful because they are supportive, and they don’t understand my disease.

But they understand that I have some limitations, and they’re OK with that. Talking about my disease with my parents and my brother, my immediate family, along my nephew whom I’m very close to, that was more difficult. My parents have had a really hard time getting their heads wrapped around my disease, thinking that they could tell me, “Oh, you just need to breathe differently or just breathe deeper.” Of course, that wasn’t the case. What I did is I shared the Pulmonary Fibrosis Foundation website with them. I said, “You can go look at the information that’s out there about IPF [idiopathic pulmonary fibrosis]. Know that I don’t have that disease.”

My disease is related. There’s a lot of information out there that you can really use but bear in mind that I’m not going to die in the next 3 to 5 years. I don’t have that type of a diagnosis. That actually worked well for my in-laws as well. The bright shining light for me in all this is that I’ve been married almost 26 years now, and my husband and I have always had a really great relationship. But there’s just nothing like a crisis to really let you know who it is that you’re sharing your life with, and my husband has just been a champ.

He is my unwavering support. He’s been my caregiver when I needed him to be. He’s just stepped up and helped reassure me that he’s going to stick around. He’s in it for the long haul—“in sickness and in health until death do us part,” he’s really serious about it. That’s really been a pleasure. One of the things I did that I always thought I was going to do someday and have never gotten around to was volunteer for my local botanical gardens. I started doing that last year. This year we can’t do that while we’re dealing with COVID-19 [coronavirus disease 2019], but last year I did that. We have a 700-acre farm at my botanical garden that’s really close to my home. I got to go out there and be part of the farm for all of last summer, and that was amazing.

That’s transferred into some other volunteer work I do with them, so that’s 1 of those really great decisions. Finally, I spend a lot of time with my furry family. We have 3 cats who allow us to be their staff, and we have 2 dogs who love us unconditionally. They’re a highlight for me. I love having my fur babies around, as I call them, and that’s of how life has gone. I don’t want to be Pollyannaish about it. Quite frankly, it sucks to have this disease. But I feel like there are places that it forced me to make some choices that made my life better.