How Do We ‘Speak CF’ in a Way that Connects Us?

Tré LaRosa avatar

by Tré LaRosa |

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We all play different roles in our lives: We are friends, children, siblings, parents, cousins, employees, and more. In each of these roles, we assume the jargon of that role when we talk in those environments. In our workplaces, we may use the scientific, technical, or specific jargon that is impossible to comprehend if you’re unfamiliar with the specifics of that workplace.

This is true for all the roles we play, though in some roles the jargon may be easily decipherable. For people who are both a sibling and a cousin, for example, language doesn’t change that much depending on who you’re speaking to. But in the lives of people with CF, we use very specific jargon and language in many different contexts.

When we are speaking to our clinicians, we use terms like “sputum,” “culture,” “FEV1,” “resistance,” “PICC lines,” and hundreds of others. In our everyday life, however, those terms change: “Sputum” and “culture” become the amorphous term “mucus,” “FEV1” becomes simply “lung function,” and the others may just be a bit too difficult to explain.

And then there is the language CFers use with one another. Since I’ve been more active in the CF community over the last year, I’ve developed some cool relationships, and I’ve noticed how differently we talk (and joke) with one another compared with how we interact with those who don’t have our shared experience.

The overarching term for different language in different roles is “code-switching.” It’s most often used to describe multilingual speakers talking to one another and utilizing different components of each language to communicate; a popular example of this is “Spanglish.” It only recently occurred to me how often I code-switch in everyday life. When you’re code-switching dozens of times a day, it becomes a language in itself, where you learn how to intermingle scientific terms with everyday language, to show expertise, and to also give insight and teach others new language to explain the complex world of CF.

I realized my code-switching as I talked last night to a community of friends and family of those with CF (it was a CFF Great Strides launch event, so I was the only CFer). This is a community of people who have a shared experience — caring about someone with CF — but have uniquely different language for explaining CF to others who aren’t familiar with it.

As I mentioned above, we use a lot of simplifications to explain CF to “healthy” (bad word!) people. Instead of explaining exactly what FEV1 is, we call it lung function. For all intents and purposes, there really is no reason to explain, in passing, what “forced expiratory volume in the 1st second” or “forced vital capacity” really mean. What’s important is what they measure: lung health. It’s also not uncommon for us to still call CF a lung disease, because that’s what causes the majority of morbidity and mortality, but it’s also common for people to be more hindered by their sinuses, pancreases, livers, or stomachs than by their lungs.

Tré speaks at a CF Family Education Day to family members of people with CF. (Courtesy of Tré LaRosa)

Ultimately, we all know language is important. I find myself focusing too much on specific and technical lingo that it prevents me from properly conveying my points without tripping up on the language. My scientific background teaches me that nuance is important and that some people will hang on every single word I write or say (which is why I try to be specific). My real-life experience shows me that most of the time, the spirit of what we are saying is the most important part. If we’re too specific, people can lose what we are saying.

So, when we are talking to the “normies,” code-switching is OK. It’s OK for us to use different language. I’d argue it’s crucial for awareness, to use generalized, simple language until people become more and more familiar, at which point, we can educate them on the more technical language.

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Lorna Allen avatar

Lorna Allen

Do people have a preference to how they are referred to in type? You've used "CFer", some use "pwCF", some prefer the whole thing "person with CF". I think at the moment in depends on the platform - formal documents use the full description, Twitter often has the abbreviations for character economy! I wonder if the CF community minds which of these is used?

Tré LaRosa avatar

Tré LaRosa

Hi Lorna – this is a great question. I don't think any single person can answer this. Ultimately, I think the right answer is that it's up to each person specifically. When I'm speaking to an audience or writing, I tend (not always, though) to use "adult/child with CF" because I think it's more formal and less divisive. People *definitely do* have a preference. The simplest solution is to ask people how they preferred to be identified. Thanks for commenting!

Karen M avatar

Karen M

... And then there are the many acronyms that are part of the coded language within the CF community.


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