The cystic fibrosis (CF) community was in an uproar during the lead-up to the release of the film “Five Feet Apart.” Viewers had many reactions, such as the following:
“It glamorizes our disease.”
“There should’ve been more involvement from the CF community.”
“But it creates awareness.”
In this column, I would like to share an experience I had in the wake of the “Five Feet Apart” release, and the connection that blossomed as a result.
I found myself in a local bookstore, right after an unusually hopeful clinic visit. Realizing the cost of books was far out of my budget, I opted to journal about my experience at the clinic instead, in the adjacent café. I’m a chronic cougher and writer — and an incurable eavesdropper, too. So, I was listening to a conversation in the café when I heard a voice saying something like this:
“Yeah, it’s about that disease,” and, “They died.”
I knew immediately that they were talking about “Five Feet Apart.” I had a million thoughts and emotions in the space of a minute. I felt defensive; that disease is my disease. I needed to talk to this person and set the record straight. However, at the same time, I considered that perhaps it wasn’t my place to do it, nor was I obliged to. And besides, would they even care? Before I had settled on a decision, I stood up and started walking toward the table.
I didn’t know how I would begin the conversation, but I had a choice: I could be aggressive or be kind. When I reached the table, my voice quavered. I realized my anger was coming from a place of hurt. I chose to be kind.
“Hi! I overheard your conversation about ‘Five Feet Apart.’ I have that disease. Cystic fibrosis.”
The person’s eyes widened. After their initial shock, we had a conversation. There were a lot of questions about my disease.
“Yes, I do take a lot of pills.”
“No, I don’t need a transplant. But a lot of people with CF do face that reality.”
I found myself doing what I do best: sharing my experiences with someone who may not be receptive to my message. It’s something I often do when I see unfamiliar doctors. Or when I’m on a date with a guy I had swiped right. I found my voice and tried to stay authentic.
I emphasized the importance of acknowledging the name of my disease — the one that had confronted me with death and caused me to lose so many friends, and the mutation that single-handedly influenced every facet of who I am. That disease. I found myself trying to establish a connection from kindness.
I think most people come from a good place, even when it doesn’t seem like it. Being aggressive is rarely necessary, and being brave enough to start a dialogue — even when it makes you feel vulnerable — is often met with understanding.
The questions were rooted in concerns shared by many in our community. I had the power of knowledge to refute the misconceptions surrounding cystic fibrosis; this was advocacy in real-time. I shared that cystic fibrosis is not a one-size-fits-all disease; it can be devastating, which is why I took the comment to heart. But I told the person that there is a lot of hope and new therapies are in development, which are positive aspects the movie didn’t portray.
It was an honor for me to be able to share and educate in this way. To cross paths with someone who previously had no idea of my existence and vice versa. It took a little bravery to break down barriers, make a connection, and be kind.
To me, that’s what it is to be human.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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