Some time ago, I was speaking with somebody about a story regarding CF that was in the news at the time. The story itself isn’t pertinent, but rather it was what that individual said to me that resonated with me. I consider this person to be a very-well-meaning friend so I didn’t take this as a slight, but an opportunity to educate him. Basically we got into a deeper discussion about my potential future as a father and if the future mother of my child is a carrier, would I still be willing to risk having a child with CF (assuming we figured out that whole infertility thing for men with CF). The specific phrasing of his question, though, was “would [I] be willing to have a child that was sick like [myself?]” (I can’t express enough how I bear absolutely zero ill will towards him for this comment and he immediately realized how it sounded.)
I don’t speak for the entirety of the CF community, but I personally object to the labeling of being called sick for my genetic disease.
First things first, a bit of pedantry. From the purely linguistic perspective, I view the term “sick” as a term that references a transient sickness, like pneumonia, the flu, or a cold. Having CF does not preclude me from ever feeling healthy, so I think it’s a disservice to our entire community to label all people affected by CF as sick all the time. It also discounts the fact that considering our lives are already so often affected by genuine ills and sicknesses, grouping all of our issues together seems dismissive and inaccurate.
Secondly, and probably more importantly, it stigmatizes us, reflects poorly on us, and “others” us. When others view the entirety of our CF – the simple reality of having CF – as “sick,” it revokes our ability to define our struggles in our own ways. It makes nearly everything we do an achievement “in addition to that CF thing,” as opposed to a genuine accomplishment. I wholeheartedly realize that CF makes my life harder in a lot of ways, but every congratulation I receive is appended with “that is so amazing in addition to your CF!” Coincidentally, today marks a year since I ran the Flying Pig Marathon. Separating the fact that running a marathon is an achievement in and of itself, it's still a common thing for me to hear "I can't imagine how you did that. I can't even imagine doing it and I'm healthy!" I understand people mean well, and this piece is not an indictment of people meaning well, but since I have to deal with CF in nearly every facet of my life, this writing project is an opportunity for me to educate others and maybe dictate the lexicon surrounding our collective experience a bit. When people are saying they can't imagine doing what you did when they call themselves "healthy," it shows how they view you differently. Navigating the realization that people mean well but it still hurts can be difficult.
When people mention that in passing, it can sometimes reflect a more genuine underlying belief, sort of like a Freudian slip. I realize CF is so much a part of me and is deeply ingrained in all of my writings, but when it’s hammered home to me that everybody always views that as a major part of me, it starts to feel like a scarlet letter. Like when I walk around, I have a name tag on that says “My name is Tré and I have CF.” I can never escape this disease, so I’ve tried to take control and be open about my experiences so as to guide what other people learn about it from me (uhhh most of the reason I went to school for biochemistry).
The belief that you’re “sick” or that others believe your entire existence is essentially a sickness is pervasive and psychologically damaging. An initial response to a cough is the assumption that you’re contagious; life expectancy is so often one of the first things people learn - and while I willingly got the tattoo of Alyssa’s handwriting so I expected this, people have become quickly familiar of Lyss’s passing because of that - so I always feel obligated to hedge my wellness; people don’t really know how to talk about the disease so it’s become an additional responsibility of mine to be as educated as possible to always give people accurate depictions and facts about it. These outwardly social aspects of life with CF become so burdensome in addition to the already mentally exhausting charge of being anxious about a tight cough or impending infection and, you can’t forget this pesky little detail, that you’re always physically dealing with CF anyhow.
Maybe I’m wrong here. Maybe I’ve succumb to a victim mentality. Maybe I’m just a millennial that feels entitled.
Or maybe I’m a part of a small community of individuals that are trying to make life as easiest as possible for us. Maybe I really care about humans being treated fundamentally compassionately and that we can all make the world easier or others so I hope others are understanding of my situation. Maybe I just want to feel like CF doesn’t separate me from everybody else other than the small population that can understand what it’s like. (Most people don’t know this, but people with CF are advised to never come into contact with one another due to infection prevention protocols; in outdoor spaces, we are allowed at CF Foundation events as long as we’re 6 feet away from one another. This can also at times perpetuate that feeling of "otherness.")
Alyssa and I discussed this a lot. She hated feeling like people constantly viewed her as sick, so she did her best to embrace it. And she inspired so many people in doing so, very obviously including myself. She was the only person in the world that I felt comfortable knowing I could talk to her in the event that my health began to fail quickly. Here's my attempt at changing the dialog a bit. So please don't label me as sick just because of my having CF.