The heaviness that comes with being a part of the CF community

Is it just me, or did January feel like an entire year all on its own? From drastic political shifts to devastating wildfires, extra-cold temperatures to egg shortages, a surge in influenza activity to outbreaks of tuberculosis, 2025 has been exhausting so far.

On top of everything, I feel a heaviness online in the cystic fibrosis (CF) community. Again, is it just me? I see many going through extremely difficult health battles and feel they need to be addressed.

We as a community have also recently lost peers suddenly and unexpectedly. For me, this month marks one year since I lost my close friend Matt McCloskey. He had CF, received a double-lung transplant in 2015, and was the founder and executive director of the Take a Breather Foundation. We spoke almost daily, and the silence without him has been deafening.

The internet and social media can be a double-edged sword. We aren’t as isolated now, as we’re able to immerse ourselves in this disease community. Many CFers form deep and personal friendships that involve a level of intimacy and vulnerability we may never know with others. And true to the disease’s brutal fashion, things can change rapidly.

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There’s so much heaviness to carry, mentally and emotionally, and it can affect us physically as well. It’s heartbreaking to see others with CF facing such critical circumstances. My feelings vacillate among fear, sorrow, frustration, and helplessness. We all find different ways to carry this heaviness, just as everyone’s CF journey is unique.

As much as I try to focus on positivity and gratitude in my life and health outlook, sometimes we have to look the cold, hard, ugly truth of CF right in the eyes. And in those moments, realization sets in that we’re in for an ongoing and difficult process.

My energy level has been lower recently, which I attribute to everything mentioned above. I often whisper prayers for others and listen for what my body needs. At times, I find myself drawn to quieter activities such as reading, talking, taking a slow walk in nature with my dog, or cooking while playing calm music. Other times, I blast heavy metal or old-school rap music and belt out lyrics while doing some type of exercise.

Conversely, there’s also much hope to be found. I’m not sure I could’ve made it through my double-lung transplant without access to others who’d already gone through it. We have no choice but to ride the ups and downs of CF. But while doing that, we must find the light in the darkness, the hope amid the fear. I’m thankful to be able to do that together with my community.

Living with CF isn’t easy, physically, mentally, or emotionally. I’m always thinking about all of us collectively.

Love and light,

Jen

You’re welcome to share any feedback in the comments below; I’d be honored and appreciative to learn how others balance the heaviness of this journey.

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.