“When you have CF so much is taken from you,” says Stella, a 17-year-old girl living with Cystic Fibrosis in the new film Five Feet Apart. With this line, Stella, played by actress Haley Lu Richardson, captures a common experience for those who live with CF or any other chronic illness — the ways in which being sick can impact every fibre of your being.
The movie, which just premiered, portrays the love story of Stella and her new friend Will (played by Cole Sprouse), another CF patient who is undergoing an experimental treatment at the same hospital. Centring on the highs and lows of their budding relationship, the film expresses their struggle to simultaneously take care of themselves while also existing in each other’s lives within a safe distance, since CF patients should not come within six feet of each other due to the risk of spreading bacteria to one another.
Then, halfway through the movie, Stella — who has always felt powerless against her illness and thus attempts to exert control over everything — tries to rebel and be closer to Will by taking back one foot from CF. Using the width of a pool stick to keep themselves five feet apart, the two go on dates around the hospital, sharing deeply personal things and growing closer emotionally.
Directed by Justin Baldoni, who hosts a docuseries called My Last Days, in which terminally ill people share their stories, Five Feet Apart captures some truthful elements of what life with CF is like — for example, in the movie, Stella becomes incredibly close with the hospital staff, which is fairly common for chronically sick patients who spend much of their lives living in hospital beds, while her best friend, Poe, another CF patient, worries about being a burden to his loved ones. Additionally, Stella has a YouTube channel where she shares her life with an online community — a parallel to the real world in which many chronically ill people use social media platforms to connect with others and spread awareness.
Still, the movie has received criticism because its title and storyline could cause impressionable CF patients to consider their condition not as serious (the extra foot of distance really does make a difference for those who suffer from the illness). Julia Rae, a 26-year-old advocate living with CF, spoke with Healthline about her outrage over the characters’ rebellion against the six foot rule, and her immense fear people will emulate this behaviour. “If we want to live a full life, we have to devote our energies to the treatment we are lucky enough to have,” Julia said.
In her own life, Julia and other CFers like Gunnar Esiason have consciously connected online for this reason. Gunnar also spoke with the outlet, expressing that the movie’s trailer seemed to sensationalise the illness by painting the actors as “weak, pathetic victims” who dwell on their condition and schedule their lives solely around their treatments. In these ways, Five Feet Apart emits some wrongful information about Cystic Fibrosis while also failing to show the varied life experiences of those with CF.
On top of this, the film, like other comparable ones such as The Fault in Our Stars and Everything, Everything, which have attempted to tackle teen romance in the face of serious illness, comes across as exploitative, turning Cystic Fibrosis into inspiration porn for abled folks, a common criticism of recent media created about those who have an illness or a disability.
What are these movies getting wrong about living with a chronic illness or disability? Keah Brown, a writer who started the #DisabledAndCute hashtag, says, “In real life we are worthy of our lives, we have fun and we survive, we laugh and we cry but we’re not often seen or given the full spectrum of human emotion in television and movies.” According to her, the media tends to glorify elements of a sick or disabled person’s reality for the sake of the story, and this does real harm when portraying the lives of those with chronic illness or disabilities.
In spite of incessant symptoms, 20-year-old Hailey Hudson says she still leads a good life. “For the most part it’s a beautiful life and I’m happy to be living it,” she says. Yet many movies tend to send the message that you are either sick or you are living a fulfilling life and there’s nothing in between.
Ezra Benus, a 25-year-old artist, says, “I think our media does not accurately represent the everydayness of living with chronic illness, with an emphasis on living.” According to him, movies such as Five Feet Apart tend to leave out the real nuances of living with an illness, including the process of being diagnosed (which can take years), the full spectrum of symptoms and the fact that illnesses affect different people differently, and how sickness can significantly impact one’s routine and relationships. These productions also tend to leave out the fact that people with chronic illness and disabilities are disproportionately living in poverty due to outdated systems and qualifications of who is considered eligible for disability. Consequently, today’s movies tend to pick and choose what aspects of being chronically ill or disabled best serve a storyline and whet the appetite of abled audiences.
Beyond this, the creative says that most movies tend to portray vague forms of cancer, which the character usually dies from. Yoyo Lin, an artist who is developing methods to reclaim chronic health trauma, believes, “Sickness is often seen as fatal in the media, as naturally the stakes need to be high for drama.” In this way, media portrayals tend to perpetuate the “kill or cure trope”, argues Shira Strongin — the founder of a nonprofit called The Sick Chicks that connects young women with illnesses and disabilities — and thus approaches sickness from a polarising perspective in which the only option is to die or miraculously get better, when the reality is that many patients are able to live long, full lives.
Going one step further, these films tend to romanticise illness, which controls the way in which sex and romance for sick folks is ultimately understood by abled people. Yoyo says, “I feel like it’s mostly situations where an able-bodied person is in a relationship with a sick person, the movie is about the sick person being in a hospital and dying.” Benus cites 2002’s A Walk To Remember as a formative example of this, saying, “the movie focuses on a normative cis hetero white ‘pretty’ woman whose illness is the ‘opposite’ or the ‘ugly’ part of their character.”
In 2014’s The Fault in Our Stars, teenagers Hazel and Augustus meet in a cancer patient support group, fall in love and travel to Amsterdam to track down a mysterious author. While Hazel is still sick, Augustus is believed to be in remission until their circumstances switch and he ultimately passes away. In this film, and in Five Feet Apart, a complicated and unrealistic romance shared between two sick people becomes a plot ploy meant to keep audiences entertained.
Hailey, who was incredibly bothered after reading the book Everything, Everything says, “A lot of these popular movies also show a teen putting their health/life in danger because they’re madly in love with another teen they just met, which I’m not a big fan of.”
So, what can the media do to showcase more authentic and empathetic narratives for the chronically ill or disabled?
Yoyo would like to see movies that show the so-called less appealing aspects of being sick, including laying in bed all day or having chronic fatigue. In fact, she says, “in the world of disability justice art and activism, a lot of the work of writing, organising and collaborating is done in bed with a wifi connection or a phone.”
Moreover, Hailey wishes more stories explored the mental and emotional ramifications of illness. “Medical trauma is highly overlooked but it’s a very real thing, especially with kids who have been patients since they were young,” she says.
Another major issue movies and television shows should consider is the intersectionality of being sick or disabled. With this, Yoyo says, “I want there to be unapologetic narratives focusing on intersectional experiences of race, gender, sexuality and illness.” This includes the QTPOC experience. Ezra also believes it’s important for us to consider the accessibility of care and socioeconomics of being sick or disabled, including, “the financial and time-consuming toll of dealing with healthcare admin and the resulting high, often prohibitive, costs of necessary medication and care”.
As movies like Five Feet Apart do succeed in raising awareness about illnesses like Cystic Fibrosis, the media could be more doing to educate people about the realities of these conditions and encourage compassion for those who are navigating them, instead of making them feel othered. Accordingly, Keah argues that media-makers must consult people with chronic illnesses or disabilities to make sure portrayals are authentic. Yoyo agrees with this sentiment, saying, “I want to see stories of chronically ill people told on their own terms. There are thousands of disabled and ill artists who have been and are creating art for and from their lived experience.”