Becoming Incurable: A long overdue, accurate portrayal of life with chronic illness
By: Katy Brennan
Life with chronic illness is a balancing act. At the back of my head, I am constantly considering the risks and benefits of my daily activities. Should I go to a three-hour-long party when it will take three days to recover? Should I go downstairs for pain medication when going back upstairs will increase my pain? Should I go for a walk when it may cause my knee to swell for a week?
Similar to my balancing act, media coverage of chronic illness is faced to weigh similar risks. Should bad days be featured when they could be viewed as pitiful? Should good days be covered if they could perpetuate rumors and stereotypes that a person is making their condition up? Should such rare conditions warrant coverage at all?
There is a fine line that news companies and filmmakers are forced to walk as they attempt to raise awareness while not doing more harm than good. Where some series, such as Netflix's Afflicted, have failed to maintain this balance, Becoming Incurable effectively portrays the reality of being chronically ill. The documentary follows three individuals, each facing their own diagnosis. While I am not diagnosed with any of the illnesses highlighted in the film (Chronic Lyme, Ankylosing Spondylitis (AS) or Severe Dystonia), I identify with distinct parts of each person’s stories.
Charis Hall who is diagnosed with AS focuses her portion of the film on discussing her advocacy work surrounding the Affordable Care Act (ACA). The film follows her to protests and new shows as she details why the legislation is extremely important for individuals with chronic illnesses. As someone who copes with their illnesses through activism, this portion of the film was not only relatable but empowering. While not everyone with a disability or illness engages in political activism, pouring passion into a pass time is certainly a seemingly universal coping mechanism. I have no doubt that if I was not already advocating for these issues, this film would have educated and empowered me to get involved and take that first step. In the context of Diversability and our goal to empower each other, I highly recommend this film solely due to Charis’ segment.
Following the release of Afflicted last year, along with various recent news articles, I find the film’s coverage of Sofia Webster’s journey with Chronic Lyme to be informative and essential. Becoming Incurable shows the reality of being treated for a chronic illness. From Sofia explaining her intense medication regimen to explaining how she over exerted herself in college leading to a flare, the film shows the reality of Chronic Lyme. It involves intense treatment and like most of us with chronic illness, patients must pick their battles -- determining if they are going to overdo it and end up in a flare.
While the raw realities of every individual are detailed in the film, I truly appreciate the balance of ups and downs included in the final version of the film. The first individual we are introduced to is Leo (Junie) Suan who is diagnosed with Severe Dystonia. The footage of his journey shows his life before his condition onset, the reality of daily life with Dystonia and his quality of life following deep brain stimulation (DBS) treatment. While it is clear that Leo faces chronic pain and motor difficulties, the film also includes the positive sides of daily life. It follows his slow improvements following DBS and features Leo’s personality as he continues to crack jokes through it all.
In balancing the bad days of illness with coverage of coping mechanisms, hope and humor, I was left with a sense of optimism and affirmation when I watched Becoming Incurable. Nothing was sugar coated; the raw, candid side of chronic illness was truly captured. Yet, on the flipside, the film wasn’t cut to dramatize or evoke pity from the audience. It simply documented each individual’s journey and gave those who aren’t living with chronic illness, a glimpse into that reality. It raised awareness about the uncertainty and unpredictability of daily life. It featured voices from across illnesses, age groups and geography. It is truly a film that I would recommend to everyone. From doctors learning about these conditions to friends wondering about daily obstacles, the information in this film is truly universal and will truly benefit anyone who views Becoming Incurable.