Couples with CF

You don’t come across many couples where both halves have CF. We are few and far between. The most common and compelling reason for this is that PWCF pose a health risk to one another. We are not infectious to the rest of humanity but the unique microclimate of our lungs means that germs are happy to tour between us. Thus, there is a vague 3 foot rule: it’s not recommended that PWCF come within 3 feet of one another. In a relationship, there may be times when a 3 foot rule would actually come in handy, but it would mostly be a logistical impediment.

Dave and I at Rottnest IslandThe medical community and some in the wider CF community cannot officially condone a romantic relationship between two PWCF. Blessedly, the people surrounding us have managed to keep any negative opinions to themselves and supported Dave and I unconditionally. In fact, I’m often pleasantly surprised by the relaxed approach of the medical staff we come into contact with.

I follow another blog written by a guy with CF called “Welcome to Joshland”. I’m often reading away and Josh’s words resonate with me. It’s like I’m reading about myself. It validates my experience. He manages to put into words how I feel or what I’ve experienced. Josh is multi-talented because amongst other things, he has a podcast too. I almost fell off my chair when I discovered that Episode 4 deals with a couple who both have CF. If you have an hour of commuting, tackling the ironing pile or going for a long walk it’s worth listening to.

It was absolutely fascinating for me to discover the parallels and differences between Dave and I, and Kev and Rhiannon. What they agreed is the best thing about having a partner with CF is what I also think is the best thing: complete and utter understanding of what we go through. I concurred with the worst thing too: it’s unexpectedly and ridiculously difficult for Dave and I to respect each other’s individual CF experience. I’m so wrapped up in my own journey and what does and doesn’t work for me that it’s hard not to accidentally meddle. And vice versa. Kev and Rhiannon talked about the challenge of being sick at the same time. With CF x 2 a problem shared is a problem doubled. They talked about how important it is to have the hard conversations about end of life care that crop up earlier in life than with “normies”. They didn’t talk about kids but I imagine for most people with CF x 2 it’s a can and a half of squirmy worms. Interestingly, Episode 5 deals with parenting with CF – another fascinating listen. This podcast has invaded my head and my heart and set up camp there, affirming part of my life journey. It will enlighten those who choose to listen.

The interview is especially poignant because Rhiannon died shortly and unexpectedly after they recorded the podcast. Kev wanted their story to be told nonetheless and I’m so thankful he did. Kev, their family and friends, indeed the listener, have all lost someone who touched us.

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3 thoughts on “Couples with CF

  1. I listened to the podcast today while vacuuming and the commuting into SF as directed, and I must admit to having to blink away some tears by the end. Kev and Rhiannon’s story was so sensitively told by Josh and his producer and I was certainly greatly moved by their honesty and the directness of how they told the truth of their lives. No cloying cliches to get in the way of the insights they were offering I guess. I especially liked that her’s was the last voice you hear in the podcast. Thanks for sharing Janette, it’s stayed with me all day.

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  2. Pingback: Hand gel and Hazmat suits | capturing cf

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