The cystic fibrosis community gets buzzing at the news of a successful Vertex trial or when a well-respected researcher even casually mentions the word “marijuana.” When a trailer for a fictional romance movie about cystic fibrosis was released, our community was more of an angry swarm than a happy buzz. Not much has been as divisive for the CF community as “Five Feet Apart.”
Why are we so quick to judge?
I want to throw my chips into the debate … mostly to say it’s weird to judge a movie before it’s released. People both in and out of our community keep asking me what I think about “Five Feet Apart,” and I typically respond that I haven’t seen the darned thing, nor has anyone else outside of the film crew.
Remember when the film name was first released and people (including me) gasped, saying the cross-infection precaution is a six-foot rule rather than a five-foot rule? We judged the film by the title alone. Then, the trailer came out and directly states that it’s a six-foot rule, but they want to be one foot closer to each other. I’d have thought we’d already learned not to judge the film without seeing the whole, but alas, people now judge the entirety by a small trailer.
Do we want realistic depiction or idealistic?
Yes, there are “mistakes” within the trailer, such as the depiction of the two people with CF walking around their hospital ward without masks. (Other scenes show the woman, played by Haley Lu Richardson, with a mask on.) But let’s face it, we rarely meet a person with CF who follows all of the rules. In fact, the trailer makes it clear that the dude, played by Cole Sprouse, is a rebellious patient who doesn’t want to adhere to the guidelines and prescribed treatments.
If we want a realistic depiction of CF, maybe including two patients — the compliant and the noncompliant — is only fitting. I don’t think an idealistic depiction really hammers in the grueling psychological torture of CF. Noncompliance is, unfortunately, a real and common result of CF mental health issues. I speak as someone who grappled with this problem. Additionally, yes, I know many people with CF who meet in person. I even know three CF patient couples. Some people theorize that this movie will encourage people with CF to meet up and fall in love. Do you really think this movie will have a happy ending? We know our risks and I predict this movie will affirm them.
OK, maybe the romance part is really weird
Yes, I feel weird having my disease romanticized, especially when a popular CF couple died in 2016 and the media called them a “Fault in Our Stars” couple — a prime example of the dangers of CF romance. And I’m tired of seeing chronic illness and disability used only as a romantic plot device. But I can’t place the entire blame on “Five Feet Apart.” I know that this is a general Hollywood representation problem. They romanticize anything, and they seem to believe people with chronic illness and disability are only valuable if someone falls for us despite our myriad problems.
It will be hard to wrap my mind around the romanticization of something that’s tried to murder me and has killed many, many friends. But, I don’t know, I guess the trailer at least made the disease seem brutal. I hope people see the movie and think, “This disease is monstrous and we need to stop it.” Let’s stop it.
Let’s own ‘Five Feet Apart’
Claire Wineland and some other people in the CF community were involved in the making of this movie. That doesn’t completely ensure an accurate depiction, but it does give me hope. At the end of the day, accuracy isn’t even my biggest hope. Rather, I hope for CF awareness unlike any known before. I hope for massive funds raised to help us. I hope for people to get a glimpse of the alienation and isolation of CF life. I hope that people care. Of all the forces of the world, who’s better at gaining positive attention than Hollywood? Our invisible disease will be visible for the first time.
The movie might be trash and mislead people about our disease. But at least people would bring up our disease so we can tell them the truth: that this disease is monstrous and we’ve endured its pains silently and often without the in-person companionship of people who fully understand, like many other disease communities are afforded.
I’m not saying our anxieties about the film are invalid. “Five Feet Apart” is a gamble. But no matter what, more people will know the words “cystic fibrosis.” We can attack the movie and tell everyone not to watch it, or we can open dialogue before and after the premiere to control the narrative of our disease. Frankly, if you only condemn the movie, people will fear discussing it with you once they’ve watched it. Let’s be honest that we have hesitations about “Five Feet Apart,” but let others know that many of us are open to discussing our reality.
P.S. I do hope that people project Cole Sprouse on me and I get many more dates.
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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