Five Feet Apart stars Haley Lu Richardson as Stella, a teenager with cystic fibrosis who falls for Will, a dour fellow patient played by Cole Sprouse. Set mostly inside a hospital ward, the new movie is the latest entry in a growing genre of terminally ill teen weepies known as “sick flicks,” the most famous of which, like The Fault in Our Stars, have been centered around cancer. But cystic fibrosis, also called CF, affects just below 0.01 percent of the U.S. population, a much less familiar disease—and one that rarely gets the spotlight in pop culture.
Directed by Jane the Virgin’s Justin Baldoni, Five Feet Apart is apparently meant to serve as something of a corrective for this absence, raising awareness about the disease while offering those afflicted a chance to see aspects of their experience faithfully depicted on-screen. The movie aligned with the Cystic Fibrosis Foundation in fundraising efforts, but within the CF community itself, Five Feet Apart has grown into a divisive cultural event, denounced and boycotted by some even while being celebrated by others.
Five Feet Apart centers around a rule specific to the disease: In order to prevent cross-infection, CF patients must remain at a safe six-foot distance from one another. This presents a fundamental problem for Stella, our high-strung heroine, and her crush-to-be Will, a hunky newcomer to the ward who scans as classic teen rebel. (His filtering Vogmask, which has menacing skull teeth printed across it, is the medical equivalent of a motorcycle.) The physical obstacle to their budding romance is made more critical by Will’s infection with B. cepacia, a bacteria that’s particularly dangerous for other CF patients—and makes physical contact even more risky. The couple eventually decides to breach the guideline by one foot, hence the movie’s title.
Despite the rarity of its central disorder, Five Feet Apart hews closely to well-trodden “sick flick” tropes. Stella wears overalls and keeps a bucket list, just like A Walk to Remember’s Jamie, while Will is a cheeky bad boy neglecting his medical regimen. With Stella’s saintly nudging, he transforms into an affectionate boyfriend equipped to care for himself. As for the six-foot twist: In an icky, opportunistic way, the rule feels ready-made for a teen melodrama, taking that hearty romantic perennial, the star-crossed lovers, and pushing it to a grave extreme. If the two touch—to say nothing of kiss—they could literally die. The movie is, in essence, a tragic love story, with the six-foot safety regulation repurposed as a heart-tugging plot device.
For Gunnar Esiason, who serves as director of patient outreach at the Boomer Esiason Foundation and has written about the movie on his blog, that plot device was a deal-breaker. Sprouse’s character “felt like a prop,” he said. “His character was designed to make a villain out of the wrong thing. Cystic fibrosis should have been the antagonist, not the contact precautions between them.”
Were there more than a handful of depictions of cystic fibrosis in pop culture, the stakes for Five Feet Apart might not be quite so high. But given how little screen time the disease gets, Esiason wasn’t the only one in the CF community on alert. In a blog post, a CF activist named Elsie Tellier called for a boycott of the film for its “inherent ableism,” writing that “terminally ill people are not alive just to make healthy people ‘appreciate their lives’ more.” The heated atmosphere surrounding the film’s release was aggravated by a botched influencer marketing campaign that had popular Instagram users who don’t have CF post tributes to faraway loved ones, comparing long-distance relationships to the six-foot rule. Backlash was swift, and all the posts were promptly deleted, though the movie’s marketing and production teams did not offer an official apology.
The controversies come even as the project has been careful to show a link to the cystic fibrosis community at every stage. During production, Baldoni and the movie’s two leads consulted with CF activist and video blogger Claire Wineland, who died in September and to whom the film is dedicated. The team also enlisted the help of a retired CF nurse, who joined the set as an adviser. Leading up to its release, the movie’s marketing campaign included CF community screenings and video clips from patients Baldoni amplified on Instagram. While doing press, Sprouse similarly emphasized the CF-centric messaging, declaring in one interview, “The people that I care the most about are the people within the cystic fibrosis community, because that’s who we made the movie for.”
The real-life knowledge gleaned from this research does lend the story a measure of authenticity, according to Aimee Lecointre, another advocate in the CF community, especially when it comes to Stella’s feeding tube, treatments, and time at the hospital. “When they mentioned all the stuff she brings, my husband elbowed me. People with CF are kind of notorious for packing up for a good two-week stay,” she said. Most importantly, the movie touches on an underexplored topic: how cystic fibrosis can affect mental health.
People with cystic fibrosis are “two to three times more likely to experience depression,” according to an international study. Stella, who lost her sister in a freak accident, is beset with survivor’s guilt—declaring that she has a duty to stay alive because she isn’t sure how her parents would cope if they lost her, too. That sense of guilt “is something that really goes un-talked about in CF,” said Esiason, who has blogged his community’s need for better mental health testing and resources. “One of the things that we’re really trying to emphasize these days is the mental aspect of living with CF, and Haley Lu Richardson’s character was hitting the nail on the head.”
The death of Stella’s friend Poe (Moises Arias) exacerbates her emotional turmoil in a sequence that Lecointre, who lost a close friend to CF, said was the most difficult for her to watch. “When my friend passed away, she was in the hospital as well, so [watching] that kind of felt like a gut punch—but not necessarily in a bad way,” she said. For her, the movie “brought up a lot of really important conversations with people who had no idea that was something I dealt with.”
Esiason, who was largely frustrated with Five Feet Apart, still finished the film grateful for the conversations raised by Stella’s emotional struggle. “A lot of people with CF go through years and years and years of what I call medical trauma,” he said. “Our mental health symptoms aren’t a textbook case of something that would show in a patient. We’re dealing with some pretty specific issues and also a number of different triggers.” Stella also refers to her obsessive-compulsive disorder, controlling her treatment and her environment even when she can’t control her health.
While Stella’s mental health is only one detail in the grand scheme of the movie—it’s more consumed with its Romeo-and-Juliet love story and ice-skating melodrama—it does breathe some authentic life into a tired genre. If the “sick flick” doesn’t want to sputter out completely, filmmakers listening closely to the communities they depict would be a good start. “I would be happy to go back and watch a movie with Haley Lu Richardson playing someone with cystic fibrosis and talking about the guilt associated with living with illness,” said Esiason. “That is a great movie in my perspective. It’s interesting, and it’s a mature topic. That was the most powerful part.”