Lara’s CF story: Talking about our struggles can help others

My column is for CF News, which is “Valiant Voice.” I write twice a month and get to talk about all the things that most people don’t like to.

One of my last columns was about pooping with CF, and also just life with CF. It can be complicated. And I know that’s been my personal journey with GI issues and digestion, and I think it’s OK to talk about.

I actually didn’t share with people that I had CF until just before my transplant. I was always just self-conscious about it because my lung disease was very aggressive, and I coughed a lot and spit up mucus all the time, and didn’t want to do that in front of people and to have people know what I was struggling through.

I think once I started talking about it, because I didn’t want people to get confused why all of a sudden I had oxygen on prior to transplant, so I started sharing my story, and that connected with a lot of people that I was sharing vulnerably.

And so from that landing point and through my own therapy, I was able to just step more into who I am and not being ashamed of parts of me that weren’t my fault.

What also helped was that I was dying, and so I think things became very real. And just all of the external forces kind of melted away, and I wasn’t scared to show who I really was, because I was like, “I could die. So who cares what people think of me?”

Since then, I’ve done a lot of advocacy around CF, and transplant and organ donation, and just really wanting to advocate for people that are ashamed of what they’re going through, and also just so they feel less alone.

Because I think that in different disease communities, it can be very isolating due to, of course, having to be isolated because we’re sick, but also because a lot of people aren’t being open about it and struggling outwardly.

I think a big one is mental health. There’s such a stigma around mental health struggles, and I’ve had a lot of my own due to medical trauma and just living with chronic illness my whole life. It’s definitely taboo, because people kind of shy away from talking about that openly.

I think some other ones are relationships. I got married last year, and it was definitely a struggle to date as someone with a chronic illness. Thankfully, my husband’s a good sport about me talking about him, but I think that is definitely something that people don’t like to address because it’s uncomfortable, and just the difference in interabled relationships.

I think also just the daily struggles of, I know for me, being judged because I have an invisible illness, and people don’t know what it’s like to live in my body and how tired I am most of the time. And just even though I have a transplant, there are other organs that are angry the majority of the time.

And I think just too, talking about how hard it is to live in a very ableism-driven society, where disabilities are kind of put over there in an “other” category. And so I’ve talked about, too, how I was fired for being sick, and that can be really uncomfortable to talk about and just shame around that.

But I think the more that people talk about their stories and normalize it, the more that we can come together and help each other through that.

My advice is that if you’re struggling with something, then most likely someone else is too. And getting connected in the community and finding people that you are able to talk with.

And I’ve found some of my very best friends in the community, where we can share stories and swap what we’ve been through, and also just encourage each other through the uncomfortable symptoms or things that we thought only happened to us, and just feeling less alone in your struggle, but also just having people to walk alongside through the journey is so important and really valuable and meaningful.