Finding My CF Community Has Restored My Sense of Belonging

Growing up, I was insulated from the wider cystic fibrosis (CF) community. Since I had a sibling with CF, I didn’t feel the need to meet other kids with CF. My sister Alyssa and I had an amazing bond in which CF was a part of our lives. It allowed us to understand each other in a way that no one else could. It helped us to grow as friends and siblings, and we gave each other the kind of support that no one else — not my parents, friends, or extended family — could provide.

When my sister’s health started to decline before her first transplant, I began to fear what seemed to be inevitable. I was terrified of witnessing my sister’s health deteriorate, seeing her struggle to breathe, walk, and perform simple tasks. I knew that hospital stays would become more frequent. I was horrified to think that one day I might watch my sister die.

For as close as we were, death was a topic that we chose to avoid. My sister wanted to look toward the future, even when it seemed that hers was fading. Alyssa thought about her life more than she communicated on social media or disclosed to us. Looking back, I understand why she shied away from talking about it. With CF, we are often shouldered with the burden of other people’s emotions. My sister likely didn’t want to discuss her fears and innermost thoughts so that we didn’t have to deal with those forever.

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My sister was my best friend, the one person in the universe I could talk to about life with CF. She was the only one who understood what I was feeling. I miss her texts about hospital peeves every single day.

In the months following her death, I committed to my writing. I made an effort to write on my blog consistently about grief and my mental health, and I worked on a CF writing project titled, “#31daysoftré.” After writing for a couple of months, I gained some confidence. I talked to Brad Dell, and he referred me to the amazing Serena Lawrence, to whom I sent some writing samples. I was promptly offered a column at Cystic Fibrosis News Today. I was ecstatic about the opportunity to write about science and social commentary.

What I didn’t expect to gain from the column was my first group of online CF friends. Bionews Services, this site’s parent company, has a stable of writers with CF, and we are in a group chat. In this group message, we talk about everything: life with CF, healthcare, advocacy, dating, the weather, whatever random topic is brought up. It’s people with CF talking about life, which for us, happens to include CF. Though what’s cool about it is that it’s not specifically about CF. For the first time in my life, I have a community of people I can talk to where CF is implicitly understood but doesn’t need to be explicitly stated or considered in every conversation.

When my sister died, I was devastated to realize that I’d become an only child. It hurts to think that I’m moving alone in this world for the first time in over two decades, but finding a community of people with CF has helped to restore a sense of belonging in my life. And I’m so thankful for that.

Follow along with my other writings on my humbly named site, www.trelarosa.com.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.