In Defense of ‘Five Feet Apart’ — Sort of

In Defense of ‘Five Feet Apart’ — Sort of

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.

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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.

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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.

19 comments

  1. Jorge says:

    Hollywood makes films about illnesses so that healthy people rejoice over their condition, and pity for a short time those who suffer it.

    • KRISTEN says:

      I saw the trailer and was curious why five feet.
      I Googled and educated myself. I’ve heard the word Cystic Fibrosis but never knew. For that reason, even if not completely accurate, it brings awareness and that can never be bad. Also, all my co-workers learned as well.

  2. Jill says:

    I do not have Cycstic Fibrosis. I know no one living with CF. The last time I heard CF mentioned in any form of entertainment was a Lurlene McDaniel young adult novel in middle school. Hint: I’m almost 40, so that was some time ago. I always want to show respect to the communities made vulnerable when Hollywood uses their struggle as a plot point. So please, understand that I only approach this conversation with the utmost respect. I hear the worry, the anger, the concern for what Hollywood has produced with “Five Feet Apart.” That said, as a viewer, when I walk into the theater to this movie it is with the understanding that I am not signing up to watch a documentary. I will not expect everything or even a majority of the ideas portrayed in the movie to be factual. When the credits roll up and the lights turn on, that is when my job as a viewer begins. I will do the research, ask the questions and have the conversations to educate myself beyond the movie. It is my hope that members of the CF community will meet those questions with patience and a willingness to help those wanting to educate themselves about CF.

  3. Sherry Berka says:

    I have a daughter with CF. I have not even seen the trailer for this movie. I don’t know if I will go and see this movie or not. But my hope is that maybe it will educate the public. Some people think that everytime my daughter coughs they can “catch” her disease. I even had a young doctor who knew little about CF who need educating.

  4. Leeba W says:

    I’m someone who watched the trailer and thought “how sweet and romantic” but also “cystic fibrosis looks pretty brutal” and started googling to learn more about it for the first time in my 31 years on this planet. I mean I’d heard of cystic fibrosis but only as one of hundreds of other genetic diseases. So I went down the googling rabbit hole for an hour or two and it really opened my eyes. I even gave a small donation to CFRI. So I really do think that the awareness from this film will be a good thing for the cystic fibrosis community overall. Even though it undoubtedly won’t be completely accurate or fairly represent everyone’s experience.

  5. T. Bane says:

    I ended up here because of the trailer since I had no idea there was a 6ft apart rule for CF sufferers or even why they would need one since I do know CF is not contagious. So yeah… even just the trailer can make people want to learn.

  6. M.A. H. says:

    I have three daughters, the youngest with cystic fibrosis. My girls have separate bedrooms, separate bathrooms and we are always aware of putting a buffer between them when we go to a sporting event, play, etc. The disease is brutal enough but this extra restriction classifies it as cruel. There are no longer CF camps where kids with this disease can be with others going through the same struggles. They can’t go to the playrooms when they have a hospital stay (and a hospital stay can last for weeks!) They must wait to take a shower when they are in the hospital until the shower has been deemed “safe”. Technically, my two girls should not even speak at the same CF fundraiser. If this movie educates people, even just a little bit, about the devastating effects of CF then it will have been worth making.

    • TK says:

      I didn’t know any of this and found this (and the concept of the movie) interesting. I had a cousin die of CF in the 60’s and from what I was told compared to what you wrote – things have changed a LOT!
      I too hope the movie helps people understand. Best wishes to your family.

  7. bcc says:

    I think it’s a new way of telling a Romeo & Juliet “star-crossed lovers” story. (After all, in the 21st century, so few families are at war with each as in 15th century Verona.) Of course, we could always read the book…

  8. Charlene Wiley-Gehrung says:

    I lost my 28 yr old to CF. This is not a movie I want to see but I hope this movie opens eyes for people who always ask what the disease is. It is the most devastating disease I believe. I hope some of the proceeds to this movie are donated to the Cystic Fibrosis Foundation.

  9. Diana says:

    My daughter was diagnosed at birth and I did not like the idea of this movie because it romanticizes something that is far from romantic. I think children are vulnerable and it gives credence to the age-old idea that dying for love is somehow… well romantic and beautiful and it’s really just a stolen idea from an event that actually did happen. Which means they make money off an idea but give no credit to the couple and families that gave them the idea. I do hope it brings awareness to CF.

  10. Jim Sutton says:

    I think there’s a misconception here that’s not being addressed. The “six foot” rule is NOT because CF is contagious — which it is NOT (it’s genetic ! ) — it’s because CF reduces one’s immunity to communicable diseases. Technically, anyone with CF should wear a mask and stay at least six feet away from anybody! But I’ve known several people with CF who never wore masks and, listening to them talk, either ignored the “six foot rule” or never knew about it (but they did know about the possibility of reduced immunity and took appropriate precautions when away from home).

  11. John says:

    I saw “Five Feet Apart” not really knowing the premise of the story beforehand. This film moved me and my awareness of CF went from practically zero to an empathetic alliance. My mom was recently diagnosed with Interstitial Lung disease which is fibrosis.
    My heart goes out to the CF community.

  12. Melinda says:

    My 19-year-old son has CF. We saw the movie together this past weekend. As a teenage boy, he has been very closed off about his disease and what he’s thinking and feeling. This film prompted the most honest dialogue we’ve had in a very long time. And I think he was encouraged just to know that maybe people might actually know what CF is now, after a lifetime of feeling like he was dealing with a disease few have heard of or understand. I’ve heard all the concerns about the movie. I understand them. But I fall in the camp of being grateful that maybe now people will have more awareness of CF. Already, I know it has helped me son feel a little less alone.

  13. Cheryl Radley says:

    I went to this movie alone on my birthday. My 27 year old son, Keith, died after his second lung transplant because of this horrible disease 20 years ago. I cried all through the movie , but it was good that I saw it. It was good that it was made. Hopefully it will help for others to see how young people are suffering from this illness. Research needs to be advanced to cure this awful way to die, unable to take a clear breath,😢

    • Luisa Palazola says:

      Hi Cheryl, I’m Luisa and I am 25 and I have CF. I know seeing 5FA must’ve resurfaced a lot of emotions, and I think it’s awesome you saw it. I wanted to note, because the movie didn’t quite highlight this, but recently the medicines coming out for CF have been phenomenal. I am currently on one, and it’s changed my life. Things are moving forward, and things are getting brighter everyday for our community. <3 Much love!

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