Some people call it a romance, others a horror flick. Both are talking about the movie trailer for “Five Feet Apart,” coming to theaters mid-March. The film features two teens with cystic fibrosis (CF) who fall in love. Online communities of people with CF are buzzing with expectation — some with excitement, others with anger.
Why the clashing viewpoints? We spoke with Michaela Blosser, a 27-year-old professional nanny with a husband, a dog and a cat. She’s had cystic fibrosis her whole life and has been a patient at UVA for 8 years. Blosser understands both sides of the controversy the movie has caused.
“Some are completely supporting it, others completely against it. I’m in the middle,” she says. “I’m happy for the awareness, but I don’t want it to be portrayed in a bad way.”
The Controversial Title of the Five Feet Apart Movie
Technically, to keep from sharing life-threatening infections, people with CF have to stay 6 feet apart from one another, at a minimum. The 5 feet mentioned in the title seems to get this wrong. But it’s really a reference to the plot: The film’s teenage protagonists fall in love and decide to break the rule to get closer to one another.
For some, including Blosser, this message could have dangerous consequences. “I’m concerned about the younger generation thinking they can blow that rule off,” she says.
The idea of two CF patients falling in love also just doesn’t ring true to Blosser. The scenario doesn’t match her experience at all.
“When I saw the movie poster, I got really weirded out,” she says. “I don’t have the desire to meet anyone going through the same thing. I’ve never really done it. If I do run into a CF patient at clinic, we have to stay very far away from each other.” For Blosser, this isn’t devastating or romantic. It’s a fact of life.
So why can’t people with CF be near each other?
Blosser explains that a person with CF has lungs with a “sticky mucus that traps everything.” They easily attract airborne bacteria that cause infections. Some infections, like MRSA, for example, can grow for years in a person’s lungs. Infections caught from other people with CF are particularly harmful, difficult to treat and extremely easy to catch. Infected lungs can stop working and even result in death.
“Minimizing exposure to infections is central to trying to stay well,” says Bonnie Reilly, nurse coordinator, and Rhonda List, parent partner & quality improvement coordinator. “In the effort to prevent cross-infection, persons with CF are called to isolate themselves (physically) from an important peer group — others with CF — the very people that they may be most able to relate to and share the challenges of their enormous care burden with.”
Virtual Connections at UVA
The UVA adult cystic fibrosis program has a virtual CF patient group called U VOICE (University of Virginia Online Integrated CF Exchange). This monthly meeting allows adults with CF to connect with each other and their care team, sharing experiences and challenges and providing support.
The physical prohibition has led to the growth of vibrant online CF communities that exist on Facebook and Reddit, Blosser says. “Those kind of support groups help a lot of people.”
Aside from the practical considerations, keeping her distance from other CF patients has emotional benefits for Blosser, too. “I get frustrated when I see people healthier than me, and I get sad and scared when I see people sicker than me. So, it’s a way to protect my mental health.”
When Media Gets It Wrong
Blosser worries her friends will start to think of her as fragile.
“I don’t want anyone to treat me differently after watching the movie,” she explains. “Yes, I want people to know that it’s serious and that when I do call off work, it’s because I have to. At the same time, I don’t want them to treat me like I’m going to break or keel over at any moment. It’s a delicate balance.”
She’s also concerned about the actual viewing of the movie. “The infection control in the theater” could cause a problem for people with CF. “Because if everyone’s in the same room and coughing airborne bacteria … I hope they realize they’re taking a risk if they go to the theater.”
Blosser plans to avoid the risk and wait until she can watch the film at home. She’ll not only feel safer, but at home, “I can laugh at the discrepancies without getting real mean looks.”
Romance Over Reality: Cystic Fibrosis Facts
Even though the development of the movie relied heavily on input from people with the disease, many worry the movie will elevate romance over reality.
Reilly and List note: “There is concern that misinformation may be damaging. Living with this chronic disease requires a lot of hard work, and there’s no taking a break from it. It requires a great deal of fortitude to keep up with treatment. It’s an exhausting disease, and it’s hardly romantic.”
Blosser describes her daily reality. “I have an hour of treatment, morning and night, every day,” she says. “I use a vibrating vest. It breaks up all the mucus in your lungs to cough it up. If I’m not feeling good, then I up it during the day.” If she’s healthy, she sees her doctors at UVA once every three months.
This may seem like a lot, but Blosser says this treatment method trumps the methods used when she was a kid. “When I was 8 or 9, my parents had to pound on my front and back to get the mucus out.”
Going to the Movies?
This isn’t the first time a movie has heavily featured an illness: Cancer, diabetes, mental illness, Alzheimer’s — these have driven plots and defined characters in numerous past films. Do you have a favorite? Or have you seen a movie that misrepresented a condition close to you? Let us know in the comments below.
Cystic Fibrosis Life Expectancy & Other Myths
Blosser lists other myths people have about cystic fibrosis:
- CF is a childhood disease. “There’s actually more adults now, because people used to live only until 16, but life expectancy has increased.”
- People with CF are contagious. “When I cough, people give me a weird look. But I’m not contagious.”
- Everyone with CF wears an oxygen tank. “I don’t, and hopefully I won’t have to for a while.”
“It can be an invisible disease,” she adds. For her part, Blosser is open and upfront about her condition. “I disclose everything,” she says.
On top of that, Blosser says she’s taken part in clinical trials at UVA. Doing so gives her a sense of giving back to the CF community. And participating in the studies has boosted her health, with “really positive results.”
“If I can do anything to help, then that’s how I can do it: using my body for science,” Blosser says.