Adapted from a YA novel, Five Feet Apart stars Cole Sprouse (Will) and Haley Lu Richardson (Stella) as teenagers who fall in love while undergoing treatment for cystic fibrosis in the same hospital. For those in the CF community, the film’s plot is controversial: Some are excited to see a movie that focuses on their disease, while others find the depiction inaccurate and even dangerous.
Cystic fibrosis is a genetic disease that occurs when a baby inherits a genetic mutation from both parents (these days, prospective parents can find out if they’re at risk for having a baby with CF). CF causes serious problems in the lungs and digestive system, interfering with a person’s ability to breathe and absorb nutrients. Children born with CF in the 1960s often died in elementary school, while today, medical advances have allowed some with the disease to live on into adulthood and have children of their own.
One of those medical advances was the discovery of how dangerous it is for two people with CF to be near each other. Proximity risks cross infection, which occurs when one person with CF transmits certain germs to another. Because some of these germs can result in life-threatening infections, it’s recommended that people with CF stay at least six feet apart — which is exactly what Five Feet Apart’s main characters are up against.
To get a sense of the varying discourse around the film, the Cut spoke to 11 people from the cystic fibrosis community (10 with CF and one parent of a child with CF) about their reactions to the movie. Some related to its characters, while others had concerns about accuracy and representation.
Gemma McLarty, 23, “CF is an isolating disease. It’s true.”
“As a teenager I definitely related to Will’s character. Facing mortality … dealing with all of that at that age is really scary, so I had a big rebellious stage. I’ve always kind of lived as though CF was not me, so when I was a teenager, I think I was in denial of being defined [by CF] and I pretended it wasn’t real because it scared me so much. I didn’t want people to know about it, and I think the fact that I hid it also pushed me to rebel and not take as good care of myself. They say CF is an isolating disease. It’s true. I felt very unloved when I was lonely. So having the support system that I do now has really honestly changed everything.”
Annie McMahon, 22, “Not only am I trying to live for myself, but more for my family and my friends.”
“In the movie, [Stella] was helping her friends pick out bikinis for spring break and she couldn’t go with them. She would FaceTime her friends at parties and that’s what I would do. In front of her friends she’d act all happy and excited for them, but in reality she was upset that she couldn’t be joining them. I definitely feel that way sometimes. Not only am I trying to live for myself, but more for my family and my friends because I don’t want to let them down.”
Ruby Steuart, 19, “I find it very unfair that I’m over here so healthy.”
“When [Stella’s] sister passed away it took everyone by surprise and so she had a very hard time dealing with the survivor’s guilt that came along with that. I identified with that. I’ve watched so many of my friends with CF pass away and I find it very unfair that I’m over here so healthy — which I know I should be happy about — while I have so many friends that are dying.”
Shelby Klug, 21, “CF changes every day with where you are.”
“I wish [the movie] had shown more of what is CF when you’re out of the hospital. CF changes every day with where you are. It’s different in a hospital, in a classroom, sometimes you’re trying to hold in how much you cough in a classroom and then you can be in the hospital just hacking it out. There’s a social change wherever you go, there’s a physical change wherever you go; if you’re closer to the beach you’re going to feel better because of the salt water. If you’re in a city you’re going to be feeling worse because of the air quality. Your body goes through these adaptations and I feel like they could have shown that because it’s not just like a person with CF is only sitting in a hospital and doing treatments and pills, it’s actually living with it.”
Mariah Hanley, 26, “That just doesn’t represent life with CF.”
“I just don’t think the plot point of two CFers falling in love is really a story line that should have ever been made. By having them galavant around the hospital and go on scavenger hunts and hikes, and go swim in the pool together … that just doesn’t represent life with CF. And if it had [to be] made, they could have made sure that it actually represented what life with CF looks like, not a fairy-tale of what people think CF looks like.”
Carly Lindmeier, 23, “Why can’t this be romantic?”
“Why do we have to say, this isn’t a romantic disease, you know? I’ve been up in the middle of the night having coughing fits and stuff, and my boyfriend will roll over and pat my back for me and help me. And I’m like, that’s romantic. In this ugly disease, why can’t this be romantic? Why is it that you can say CF isn’t romantic, therefore my life can’t be romantic?”
Tré LaRosa, 24, “We hate it because we can’t really ever have a true friendship.”
“Most people with CF don’t hate the six foot rule because they can’t hook up with other people with CF. We hate it because we can’t really ever have a true friendship. For example, Carly [Lindmeier] and I have gotten pretty close over the past six months, and it sucks that if I were to ever to visit California, I couldn’t go grab a coffee or beer with Carly. It’s not necessarily that I can’t have an emotional relationship with other people with CF, but I can’t be in the same space where we’re sharing a beer over our joint experience.”
Luisa Palazola, 25, “Absolutely no way in hell would I break that rule.”
“I know what it’s like to fall in love, not with a CF person, but there’s no way in hell I’d ever … The mere fact that they were in the same scene together made me uncomfortable. I love my friends with cystic fibrosis, but absolutely no way in hell would I break that rule.”
Jenny Livingston, 31, “I never got to hug them.”
“When Stella says, ‘he was my best friend and I never hugged him,’ [of her friendship with Poe], I burst into tears because I’ve had that regret. To have a really close friend, a best friend, that you love so dearly with CF that you can’t physically touch is really sad and it’s hard. I’ve said that out loud when friends have passed away. I never got to hug them, I never got to hang out with them, I never shared those very normal friendship experiences with them.”
Draven Reid, 24, “They think it’s just like asthma.”
“I think a lot of people don’t realize that cystic fibrosis affects your whole body, they think it just has to do with your lungs. They think it’s just like asthma. I have diabetes along with cystic fibrosis. I feel like they didn’t do a really good job with the progression of the disease.”
Tasha Nelson, 38, the mother of a 7-year-old with CF, “Even though they’re trying to be an ally, they’re not sensitive to one of the most basic understandings of the disease.”
“Five Feet Apart was released during cold and flu season, which is the hardest time of the year for our community. If they go and sit in a theater accidentally next to a person with CF, they could cross contaminate and drastically reduce each other’s life span. And how many other people in that theater could be infected with flu or any other horrible things going around this season? It just shows that even though they’re trying to be an ally, they’re not sensitive to one of the most basic understandings and concepts of the disease.”