(Sick) boy meets (sick) girl. They fall in love. It ends in tragedy. It’s a story I’ve heard many times. Hollywood has a way of recycling narratives and tropes that have been moneymakers in the past, and I can hardly blame them. You have to do what works, right?
I recently watched the movie Five Feet Apart, which came out in the United States in March 2019. It has a storyline just like the one mentioned above, following two teenagers with cystic fibrosis (CF), Stella and Will, as they spend their days living in the same hospital. CF is a genetic, chronic condition that leads to an overproduction of mucus in the body, which hinders the function of several vital organs, such as lungs, pancreas, and liver. More than 70,000 people worldwide have the condition, including myself.
The two protagonists have good chemistry and embody two personality types: Stella, the control-freak, quirky girl, and Will, the pessimistic guy who has lost his way and needs a girl to get him back on the right path. (Setting the issue of illness aside, this is a gendered dynamic other movies have captured in the past.) Will suffers from a severe bacterial infection and is taking part in an experimental drug trial to treat this infection while Stella is waiting for a lung transplant — one she isn’t eligible for if she catches Will’s bacteria. As a consequence of this, and as a general rule for CF-ers, they have to stay 6 feet (about 1.8 meters) apart from each other because of the high risk of cross infection. The two fall in love and eventually step one foot closer to one another as an act of defiance against their disorder.
The movie’s director Justin Baldoni and his team worked with the Cystic Fibrosis Foundation in the US and a young CF-er and activist, Claire Wineland, to turn this movie into one that would raise awareness about the condition. Hollywood often focuses on portraying illnesses and conditions that make patients outwardly appear ill, or ones that ‘sound’ particularly scary, like cancer, perhaps for dramatic effect or to set sick characters apart from their healthy counterparts in the most obvious way possible. Therefore, Baldoni’s choice to focus on a more invisible disease with the purpose of raising awareness about it is commendable. After watching the movie and thinking of my own experience with CF, I felt scared of the intensity of the illness in the movie, touched by the love story between Stella and Will, and also frustrated that the spectrum of CF wasn’t represented in the film. I asked myself: to what extent does Five Feet Apart (and movies of the same genre) raise awareness about the condition in a way that is considerate of actual people dealing with CF? How does this movie impact CF patients seeing the movie and non-CF viewers?
To some extent, the movie Five Feet Apart achieves its purported goal and allows viewers to walk away with a more nuanced understanding of the condition. In the movie, Stella obtains additional nutrition through a gastrostomy tube, uses a nebulizer and a pulsing vest to loosen mucus in her lungs, and makes mention of eating enzyme substitutes to help with her digestion. What bothers me is both the way this movie makes viewers think of CF-ers and how it might make CF-ers regard themselves. Throughout Five Feet Apart, viewers can’t help but get swept up in the romance of the reclamation of the last foot of distance rather than questioning the logic of their arguably reckless behavior. When around each other, Will and Stella often take off the face masks they have to wear to minimize the spread of bacteria (at almost random times) — Stella even does this while roaming other parts of the hospital on her own. It’s problematic that Will and Stella are depicted as sick enough to be confined entirely to the hospital but healthy enough to ignore basic precautionary measures like the face masks — this goes back to the point about the performative nature of illness in many Hollywood movies. Framing CF in the context of this love story between two careless kids romanticizes their illness and their medically negligent behavior; it also largely misunderstands the priorities of many people with CF.
CF naturally shapes the identities of those who walk through life with the condition, but to varying degrees. Some have the privilege to store CF in the back of their mind and in one corner of their identity; others don’t. In either case, CF-ers, and chronically ill people generally, are human beings with dreams, goals, jobs, families, friends, and preferences outside of their disease. Yet, after Five Feet Apart, viewers might be under the impression that not being able to touch others with the same condition is the biggest obstacle CF patients face or that it is unlikely for CF patients to find healthy and fulfilling relationships with people who do not threaten their health. This is especially problematic in light of the fact that CF is an incredibly expensive disease and difficult for many American patients to finance: even with ‘good’ health insurance it’s hard to get all the treatments covered. This issue is mentioned once, in passing, in the movie. In Germany, public health insurance coverage for CF is excellent, reflecting a commitment to not punish people for so-called “pre-existing conditions”.
My personal story with CF is a little strange: I was diagnosed much later than most CF-ers who usually get diagnosed by age 2 — I got my diagnosis at 4 years old. It was due in part to the fact that I was apparently too healthy to have CF but too sick to be healthy. I only had to deal with a bad bacterial infection once, 3 years ago, and managed to recover well from it. Today, I am lucky enough to live a mostly healthy life: all I have to do is use my nebulizer, take enzymes to digest my food, and take extra care of my liver. Still, I live my life trying to reconcile my dreams, plans, experiences, friendships, and education with the fact that CF is always in the back of my mind. Many chronically ill people deal with greater fluctuations in their state of health, often being in and out of the hospital — something I cannot relate to as much as it has simply not been my experience.
As opposed to how I have ended up living my life, Five Feet Apart takes place almost entirely in a hospital. Unlike Will and Stella, some CF patients don’t immediately appear sick to the general population, which doesn’t undermine the seriousness of their illnesses. In fact, many CF-ers are out and about in the world and regularly struggle with doing everyday activities, such as feeling well enough to perform well academically or professionally. Just because they do not conform to the Hollywood trope of what a sick person should live like, it doesn’t mean that they do not deserve recognition for their often invisible battles. It is damaging to depict them on-screen as completely separate from the “real world” and with no other prospects than remaining in the medical facilities and falling in love with other sick people. Representing CF-ers solely in the suspended space of the hospital alienates and reduces this already cinematically under-represented group of individuals who have been dealt a genetic bad hand. Of course, one movie cannot represent the experiences of 70,000 individuals. However, it is valuable to examine the kinds of effects this film can have for the real lives of the people it aims to represent, both as audiences who want to see themselves reflected on-screen and as a group with only tokenized representation.
It can certainly be argued that films like Five Feet Apart are necessary for starting a conversation. Representation is important, but how you represent an issue is a more pressing question. Five Feet Apart depicts chronically ill people in a romanticized way, ultimately giving them little genuine character development outside of the hospital context and little to hope for in the long-term. The fact is that movies and popular media shape people’s perceptions of the world and of themselves more than we know, especially when it comes to how marginalized groups are seen. Chronically ill people already face various difficulties and obstacles and, frankly, it’s time to take interest in this group even when they aren’t quirky teenagers falling in love with one another. To this end, we must create room for chronically ill people to be depicted as interesting outside of the context of their disease and their disease-related tragic love stories. Five Feet Apart actually has three characters with CF in it, so one way of making the movie more inclusive and diverse in terms of how it represents the condition would have been to give this third character a storyline outside of the hospital. The third character, Stella’s gay best friend, Poe, dies towards the end of his movie and appears to only serve as a way to make Stella realize she needs to build a life outside of her treatments. This is a sad and damaging depiction of LGBTQ+ members of the CF community.
Without giving too much away, the ending of the movie is rather depressing. Walking away from movies like Five Feet Apart, you can’t help but think: it doesn’t, it can’t, end well for you if you are sick. If you’re a CF patient and already very sick, how hopeless does it make you feel to see that, even in the movie-world, your ending is almost necessarily tragic? Doesn’t that negate the step the filmmakers are taking by attempting to depict the disease and make patients feel represented? To me, it feels like movies like this bring us one step forward and two steps back.
I want to end by considering the real impact that representing more manifestations of CF in cinema can have: it’s terrifying to find out your child has CF, even today when the prospects for patients are much better than they were 10 or even 20 years ago. I know it was terrifying for my parents — they had no idea how my CF would develop and come to affect my life. Using media to bring more optimistic and varied representations of chronically ill people into the public sphere can make a meaningful impact on the lives of these parents and their children while also allowing chronically ill people like CF-ers to be viewed as more than their disease.