The trailer for “Five Feet Apart,” the spring 2019 film about two people with cystic fibrosis (CF) falling in love despite cross-infection guidelines, dropped on social media this month. Like every other person with CF, I clicked on the trailer eager to see what my disease looks like on the big screen. The trailer reassured me that this could be a good thing for our community, our friends and family, and random moviegoers. However, I was surprised by the reactions from some in the CF community; mostly the excessive criticism and the assumptions about the film’s shortcomings before seeing it in its entirety. I encourage everyone within our community to rethink the lens that may have influenced your reactions.
What is ‘right’?
Following the release of the trailer, I observed a lot of “I hope they get it right” speech on social media. I get it. I, too, hope the movie is a thoughtful and accurate representation of what it might look like to live with CF. Yet, I fear we might need to reevaluate our expectations. Remember this is a fictitious story that was written for the CF community, but also for a larger audience that probably has very little exposure to CF. The audience will not have the same degree of context we have living with CF. No, the movie will not be 100 percent “right” because all entertainment has a pinch of creative freedom and abbreviation.
The details of our experience may not be fully represented because no two people with CF are exactly alike. Sometimes I question whether we all have the same disease. How could the filmmakers explain the complex and dynamic CF experience within the constraints of a feature-length movie? They can’t. However, the film gives us a starting point to begin a dialogue about our own experiences, successes, struggles, and unique stories. Reevaluating our expectations might ultimately protect us from the disappointment that the film did not tell our individual story or our distinct “right.” I don’t think there is such a right. Or maybe there is.
Isolation hurts us
I believe isolation hurts us emotionally and mentally — perhaps more than we let on at times. It cuts deep, and I think that’s partly why emotions were so extreme following the trailer release. We all know the guidelines, just as we know the risks associated with straying from these guidelines. Every adult with CF determines how the guidelines best fit into their experience with CF. I do not believe that unwarrantable finger pointing and assumptions about how much an individual cares about themselves and others can be decided solely by the degree to which you follow the guidelines. That’s hurtful and condescending behavior.
Being isolated from those who understand your experiences best is simply terrible. I don’t know of any other chronic illness community that lacks the option of safe physical and social support like we do. I often wonder if the level of strict isolation affects the prevalence of anxiety and depression in our community. Due to a lack of available research, my uneducated guess is “yes.” Maybe in an ideal world where physical contact was safe, we would be both physically and mentally healthier. Who knows? I know isolation and cross-infection guidelines are not a black-and-white issue, and hopefully “Five Feet Apart” will encourage us to explore it further.
Overly critical = unreachable
The responses that worried me most were the blatantly critical ones. Social media serves a special role in the CF community. It provides us with connections that most of us would not have otherwise, and that’s great! However, I think it has harmed us in many ways as well. One of those ways is that our community can sometimes be unreachable because it is such a specific virtual niche.
I fear that if we are overly critical as a community, we will continue to be unreachable. No one will want to get to know us. No one will want to spread awareness or listen to our different perspectives because it’s very intimidating to try to permeate such a haughty and disdainful wall. No, we don’t need others to be our voice, but there’s also nothing wrong with building armies of allies and supporters. I hope as a community we are welcoming to supportive people who wish to spread awareness and refrain from prematurely denouncing their efforts.
Finally, if you want to discover the beneficial impact of the film, you will. The same goes if your sole purpose is to unravel the intended message and further awareness of the CF community. I will choose to process the film with an optimistic and open mind, the same lens through which I prefer to view my own experience of CF. “Five Feet Apart” could be a good thing for us, if we give it the chance it deserves.
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.