Hand gel and Hazmat suits

I went to the Australasian Cystic Fibrosis conference this year. Being a PWCF I needed to cut through some cross-infection themed red tape before I could attend. You see, our lungs are usually colonised with a short list of bacteria that just love, love, LOVE PWCF. Truly, they do love us – we receive Valentine’s Day cards and everything. These bacteria are pretty promiscuous and like to have intimate relationships with the lungs of as many PWCF as they can. According to the research disseminated through our clinics these bugs achieve their aim. To facilitate my conference attendance I signed one form declaring that I wouldn’t sue anyone if I picked up a nasty bug. I autographed another stating that I have never harboured any truly nasty bugs and provided a letter from my doctor verifying my claim. I was also issued a pin to identify me as a PWCF should anyone wish to avoid me and my general vicinity. Once the forms were signed, my pin was donned and I had bathed liberally in sanitising alcohol hand gel I really enjoyed the conference.

Dave and I

Dave and I at Great Strides 2013 – a walk to raise money for Cystic Fibrosis NSW.

The vast majority of attendees were parents. Naturally, the fact that I am a PWCF and am married to another PWCF came up. Upon hearing this unexpected bombshell, most of the parents would make a remark along the lines of “You aren’t supposed to do that you know.” or “You’re breaking the rules.” or “I bet your doctors aren’t too happy about that!”. In a few group situations people weren’t able to express their dissent verbally but their expressions were stricken and/or disapproving. Lovely reactions, aren’t they? So encouraging and positive.

You see, preventing infection or cross-infection is a top priority in the lives of parents of young PWCF. I’ve thought about why parents these days are so throughly focused on this issue and I can only conclude that as a parent of a child who’s lungs are currently not colonised with any bugs you see the world very differently to an adult who has been colonised for two or three decades as is the case with me and Dave. I imagine that parents feel a tremendous responsibility to do everything they can to prevent infection occurring at all or at least as late as possible in their child’s life.

Cross-infection is a consideration in our general life but it is not a consuming passion for us. We don’t think about it on a daily basis. We carry on as any normal couple does and only enact a strict “No kissing/hugging/coughing/sleeping/breathing or existing within 3 meters” rule when one of us has a cold or, God forbid, the flu. We essentially have the same bugs already and 8 years of living together as man and wife has not caused us any bacteria related troubles whatsoever. One day we might have a newbie bug to contend with but we’ll cross that bridge IF we come to it. We can’t live our lives around “if’s”. There’s too many!

Hazmat suitOn occasion we also hang out with other PWCF. No one turns up to these gatherings wearing a Hazmat suit. Instead, as intelligent and informed adults we take reasonable precautions to protect ourselves and each other. Each individual has a different idea of what reasonable precautions entail but I believe we’re pretty good at respecting each other’s boundaries. Dave and I do draw a line about meeting PWCF who are colonised with Burkholderia cepacia which has a distinctly nasty reputation. It has a tendency to wreak havoc in people’s lungs although it must be recognised that there are people who manage to coexist with cepacia for years and years. In our opinion it’s definitely a bug to black list so Dave and I have made a joint decision to be very cautious on this front. We are also pretty cautious about MRSA but not quite to the same level of paranoia. As such, there are people with CF who we regretfully chose not to meet face-to-face which can be very difficult at times. Apart from the annoyances of conducting a long-distance friendship within the same city, I feel like I’m treating my companions like they have ebola or the plague and must be handled with tongs and a gas mask or not at all. I feel horrible and I’m sure they could feel horrible about their enforced quarantine if they chose to.

Historically, I have also felt like a hypocrite for on one hand being married to a PWCF (which is tantamount to suicide in some people’s minds), yet on the other hand, not meeting up with people with certain bugs. It’s only just dawned on me how I have reconciled these two seemingly opposite positions. Apart from other CF couples or families where two or more relatives have CF, most PWCF have just themselves to protect from cross-infection. Everyone else is outside of their zone. Dave and I are not just individuals, we are a team and our zones overlap. We no longer need to protect ourselves from one another. Instead, we help protect each other from everyone else (in the least fanatical way possible). This is a crucial difference for me.

Cross-infection guidelines have caused real psychosocial problems. PWCF are probably living longer and healthier lives as a result, but they are living longer and healthier isolated lives. It’s becoming much harder to meet PWCF in a physical sense as we are forced to dosey do around each other from one sterilised room to another at clinic. We no longer share rooms with other PWCF when in hospital and are strongly discouraged from talking in the hallways and foyers. The legendary CF camps of yesteryear are banned. Folks old enough to have been on the CF camps talk of them as being some of the best times of their lives, the stuff memories are made of, the forging of lifelong and deep friendships. Peer support is so important. We all know it is. Life wouldn’t be much fun if we didn’t have colleagues who understand the unique challenges of our work, siblings that we can roll our eyes with at our parents, school friends united against a bullying teacher, cancer survivors swapping treatment stories or people in the armed forces who know exactly what it’s like on the frontline of battle.

Social media and other technologies are trying to fill this particular void with some success. The worldwide CF community needs to become more creative to facilitate friendships and the sharing of information and experiences between PWCF and their families. It would be fantastic to focus on and celebrate the things which unite us rather than the bugs which keep us apart.

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