Finding community in the world of cystic fibrosis cross-infection
CF poses a challenge by isolating those who have it from others in their tribe
The release of the movie “Five Feet Apart” was being publicized during my pregnancy with our second child, Claire, who we’d just learned would potentially inherit cystic fibrosis (CF). I’d never heard of the disease until around the time of publicity blasts for the film.
Suddenly, I was surrounded by information, not only through the endless doctor appointments I was having to attend, but also in the media. I was dealing with so much stress about the unknown then. I knew I wouldn’t be able to watch the movie without becoming anxious. So I skipped it and to this day haven’t watched it.
However, those quick film trailers had an impact on me. They taught me the first thing I learned about cystic fibrosis and relationships: Those with the disease cannot be within 6 feet of each other due to the high risk of cross-infection.
The movie’s storyline was clear from the previews. It told a Romeo-and-Juliet-style, star-crossed love story of two adults with cystic fibrosis. But this forbidden love wasn’t the result of feuding family rivalries; it was created by the disease.
At the time, I honestly didn’t understand the significance of the cross-infection precautions or how they would affect us if Claire inherited cystic fibrosis. My husband and I had just tested positive as carriers, though we had no family or friends with cystic fibrosis. I thought CF was so rare that we’d likely never encounter another person with the disease. I forgot about the prospect of cross-infection quickly after dismissing the unlikelihood of the situation. The movie came out, left theaters, and life went on.
The need for community support
Claire was born with CF, but cross-infection was still one of the less-pressing issues I had to worry about. That was until I started attending Cystic Fibrosis Foundation (CFF) events. The common thread among these events was community. I quickly realized how crucial that village of support was for me to maintain my mental health as a caregiver.
Still, there was the deafening absence of those with the disease at these events. I met mothers, sisters, aunts, and grandparents, but seldom someone actually living with cystic fibrosis.
The CFF maintains strict protocols for their events, which limit the number of people with CF who are allowed to attend. Often it’s contingent on whether the event is indoors or outdoors. As I kept attending events, I realized the gravity of these precautions.
Only then did I realize how impactful these safety measures are on finding your support community. It isolates those with the disease in a unique way. It also leads to a sort of isolation among us as caregivers. I understand and respect the significance of adhering to cross-infection safety policies from a medical perspective. But I can’t help feeling like this trait of cystic fibrosis is one of its cruelest.
As I continued to meet more parents, the sudden implications became apparent. It meant that as much as I wanted to schedule play dates and hang out with other families like ours, we couldn’t.
It made me feel for people with CF in a new way and also consider my daughter’s future in a new light. These types of relationships seemed crucial for a person’s mental state. How does one reconcile that the person who can relate to you the most can’t be within 6 feet of you? Would my daughter ever be able to relate to another person with the disease in a significant way?
For now, I can only dare to dream that someday cross-infection won’t be an issue. Until that day, I’m grateful we have FaceTime.
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.