Five Feet Apart and My Reality

When the cinematic trailer for Five Feet Apart was released, mixed reviews emerged from the online Cystic Fibrosis (CF) community virtually overnight, and they crossed a wide range of emotions. Some believe that any publicity for CF is beneficial – both for public understanding and for awareness – and if the details aren’t quite accurate, that’s just Hollywood.

On the other end of the spectrum are those appalled by the trailer, believing that no good can come from any publicity that has the balls to suggest that people with CF may actually stand in the same room, let alone touch.

The issue of cross-infection has been the subject of raging debate in the CF community for decades. Guidelines, also known as infection control protocols, differ from country to country, and even from clinic to clinic.
But this wasn’t always the case.

Born in the early 70’s, I grew up surrounded by other children with CF. We played together, shared hospital rooms and our social highlight was always the annual camp. Camp was a place where we were no longer the only child who had to take handfuls of capsules before we ate, no longer the only child who couldn’t play because it was time for physio. Instead, those things that marked us as different were our shared normal.

Cystic Fibrosis Western Australia CF Camp 1980. Photo from West Australian, April 28th 1980

Towards the end of the eighties, cross-infection was a buzzword that I never paid a great deal of attention to. At the time, I was sharing a house with other people with CF. Because of my choices, I was warned repeatedly it was inevitable that I would cross-infect. I accepted that inevitable risk and did nothing to prevent it, engaging in all the activities that were frowned upon. We shared bedrooms, food, drink, and not only did we do physio in the same room, we also shared a physio table.
For a while, I even dated another person with CF.

When Burkholderia Cepacia reared its ugly head, whirling through our tight-knit community, it fractured life as I knew it. Cross-infection, the buzzword I’d ignored, became a much bigger deal. We were segregated, classified and ranked by the bacteria we cultured – into those who had Burkholderia Cepacia, and those who did not. The segregation that was designed to stop cross-infection saw policies designed that treated some people as walking health hazards, and they were not welcome on the same clinic day or invited to officially organised events and fundraisers.

This time I paused to take note. I view the cross-infection guidelines, for what they are. Guidelines. I work within those guidelines, by following good practice and not taking stupid risks, but ultimately, outside the hospital and clinical settings which have a duty of care to their patients, the decision to remain in personal contact with my friends with CF is my own.

These people are my family, my tribe, an important part of my identity, my sense of self – even if they could no longer be part of our official social gatherings, I was not prepared to cut them out of my life altogether. So I stayed in contact with my friends who cultured Burkholderia Cepacia within responsible infection control guidelines. We met in the open, we stopped sharing food or drink, and most importantly, the hugs and kisses goodbye ceased. While our social gatherings were a risk, they remained a known, and therefore manageable risk.

Cross infection for people with CF has become a minefield. It seems that every year the guidelines change, and now its normal for a person with CF to grow up isolated from other people with CF. Despite all these preventative measures, which can include cleaning and sterilising clinical rooms between patient visits,  even those people with CF who have never had known contact with another are still contracting Pseudomonas, Burkholderia Cepacia and other infections.
Is it the fault of the cross-infection guidelines?
Are even these extreme measures not enough?
Here the answer is more clear cut, bacteria that thrive in CF lungs also grow in the environment. Naturally.

People with CF might be able to avoid one another successfully, but they can’t avoid life.

For me, the knowledge that cross-infection between people with CF was not the only method of contracting bacteria is why I chose my mental health over what I consider a feasible and manageable risk. I know that my identity and my sense of belonging would not be the same without my friends with CF. No one truly understands me like my friends with CF do. I don’t have to explain, they understand me because they are my tribe.

I cannot begin to imagine how isolating it must be to grow up feeling different, never meeting anyone else with shared experiences. I don’t know of any other disability or chronic illness where contact is frowned upon, making this isolation unique. I know that without my CF friends my mental health would have suffered.

Does cross infection exist?
I have friends who cross-infected. On the other hand, despite living together without preventative precautions my housemates and I never cross-infected. It’s possible that I avoided cross-infection while living with other people with CF by sheer luck, I’ll never know. But I’m confident of this – I don’t think luck has played any part in the years since.

Another person with CF is a known risk,
one that is manageable.
It’s the unknown risks that scare me.

My friends with CF have never coughed on me, never kept a lunch date when they have had either a raging infection or a common cold because, like me, they know what damage these seemingly innocuous illnesses can do. They know it is better to cancel, to not take that risk.

I wish I could say the same for everyone else I encounter. Especially the people who lurk near me, as they complain how dreadfully ill they feel, while they cough and sneeze contaminating my surroundings with their germs. The same germs, which for me, can mean more than a slight inconvenience and result in weeks in hospital.

Despite personal opinions, whether you are a rule breaker or someone who follows the guidelines to the letter, the desire for contact, for your tribe, is an inbuilt human trait. It is something we need to thrive, and as much as an online community can try to substitute, it will never replace personal interactions.

In storytelling, emotion is a far more powerful tool than facts – and if the movie lives up to the trailer, it’s this emotion that Five Feet Apart has gotten right.

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