What Five Feet Apart Gets Right About Living With Cystic Fibrosis

The new Y.A. movie, Five Feet Apart, follows two 17-year-olds, Stella (played by Haley Lu Richardson) and Will (played by Cole Sprouse), who both have cystic fibrosis, a genetic life-shortening disease that causes thick mucus to build up in the organs. While they're in the hospital — Stella for a "tune up" after an infection, Will for a clinical trial for a new drug — they meet and fall in love. But, there's a catch: cystic fibrosis patient guidelines require Stella and Will to be at least six feet apart from one another at all times.

As the couple connects on an emotional level, Stella decides she wants to skirt the six-foot rule, so she holds a five-foot pool cue between them to maintain the physical distance. "After all that CF has stolen from me, I don't mind stealing something back," Stella says in a vlog. "One foot. Just one foot closer." Their forbidden love eventually reaches a breaking point that we won't spoil, but is very dramatic and a tear-jerker.

Anytime there's a fictional portrayal of an illness, it poses questions about how romanticized the plot is. In this case, you might be wondering how much of the six-foot rule was exaggerated in order to facilitate the narrative? As it turns out, it is a very real thing. "The reason for this six-foot rule, and the reason that we don’t encourage people with cystic fibrosis to have close contact with each other, is because of the risk of transmitting germs, some of which can be dangerous or resistant to antibiotics," says Drucy Borowitz, MD, pediatric pulmonologist and vice president of community partnerships at the Cystic Fibrosis Foundation.

To be clear: people with cystic fibrosis can interact with and touch people without it, this rule is just for both people who have the disease. When people with cystic fibrosis get a respiratory virus, they can get sicker than someone without cystic fibrosis, because germs thrive and multiply in the sticky, mucus-y environment. So, while cystic fibrosis itself is not contagious, the germs that affect people with cystic fibrosis (in the movie, Will has B. cepacia, a particularly harmful species) can cause more harm in other people with the disease. And the six-foot distance isn't arbitrary, it's based on how far germs can spread when someone coughs or sneezes.

Most people with cystic fibrosis spend two hours every day on medical treatments to stay healthy, because the disease affects several organs, says Traci M. Kazmerski, MD, MS, assistant professor of pediatrics at UPMC Children's Hospital of Pittsburgh. For example, someone with cystic fibrosis might inhale medications through a nebulizer or use devices, such as a vibrating vest, several times a day to help clear mucus and prevent long-term damage to the lungs. "Despite doing all these treatments, people with cystic fibrosis are often hospitalized when they have a bacterial infection of their lungs or when their lung disease becomes more severe," she says.

As you can imagine, the schedule and conditions can be isolating for young people with cystic fibrosis who want to connect with other people with the disease. "For anyone with any chronic illness, especially a teenager, that feels very isolating," Dr. Borotwitz says. "Not being able to really have direct personal contact with other people is tough." Thanks to the internet and video chatting (which is a theme in Five Feet Apart), the Cystic Fibrosis Foundation has developed "safe spaces" where people with cystic fibrosis can connect, she says.

Ultimately, Dr. Borotwitz and Dr. Kazmerski hope that this buzzy fictional film demonstrates the challenges of living with a severe lung disease, and having a highly medicalized life, but also some of the triumphs. It's also an opportunity to spread awareness about the common genetic disease that affects more than 30,000 people living in the U.S., she says. "The thing that's been really remarkable, is that this used to be an illness where people didn’t live past the first decade of life — and now more than half the people in the U.S. with cystic fibrosis are adults of all ages," Dr. Borowitz says. "Cystic fibrosis is a part of who people are, but it's not what they are."