The Book/Film “Five Feet Apart” Stokes Controversy in the Cystic Fibrosis Community

The book Five Feet Apart was first released to the public in November 2018 and on March 15th, 2019, a film based on the novel was released into theaters. The story features a teenage boy and girl who both have the rare lung disease cystic fibrosis. The premise of the story is focused around the fact that while they share romantic feelings towards each other, they technically are not permitted to stand less than six feet apart in order to reduce the risk of transmitting lung infections to each other. The story has provoked mixed reactions from the cystic fibrosis community.

Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.

For some cystic fibrosis patients, Five Feet Apart feels like a real way to improve representation and spread awareness about the disease by having it make the big screen. An example of support for the film is this Instagram post from the Claire’s Place Foundation.

There is no doubt that spreading awareness and representing patients in media like this is pretty important, but at what cost? Five Feet Apart has definitely received some significant pushback from the cystic fibrosis community as well. Take this statement from patient Jenn Whinnem’s blog:

“My fatal disease and my pain are not a f—king plot device for your fantasies.”

Jenn elaborates to explain the main criticism that many cystic fibrosis patients have with the story. The whole “six feet apart” policy isn’t a joke. It’s a way to protect patients. A single serious lung infection can easily turn into a life threatening situation for someone with this disorder. The fact that this rule is being utilized to stoke the plot of a romance story does seem a bit melodramatic and, perhaps, exploitative.

In another think piece from cystic fibrosis patient Gunnar Esiason, he is quick to point out that both the film’s director Justin Baldoni and actor Cole Sprouse, who plays the male patient in the film, have both said that the film is for the cystic fibrosis community. But Gunnar is quick to call in question the authenticity of this assertion. It just seems likely that an actual patient would never choose to write a story about cystic fibrosis in this way. Further comments in his piece suggest that viewers should not expect a very accurate portrayal of life with cystic fibrosis.

While the intent of this story is not to explicitly endorse or condemn the movie, we aim to center the voices of cystic fibrosis patients themselves in response to it.

 

 

 

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