Noura Boustany Jost
Chronic Illness Changing My Art Perspective
Chronic Illness is a funky thing. As someone who’s a chronically ill actor and writer, I found myself feeling rather useless when I was sick. I was starved for some sort of media surrounding a chronically ill individual, searching for someone who was similar to me, whom I could relate to, whom I could see myself in. I was this new person, and I felt alone.
I learned, through research, that I wasn’t alone in this. Over 133 million Americans are living with a chronic illness, which is more then 40% of the population. I was shocked to read this. Why did I feel like I was so alone when so many people were dealing with exactly what I was dealing with?
As a film student, before I became ill, I saw media through the lens of how aesthetically pleasing it was and how it fit into the filmography of this generation. As soon as I got sick, I learned to recognize it for more than that. Media is not just around to be talked about and discussed, or to be praised; it’s here for people. It’s a comfort. I mean, if the pandemic taught us anything it’s that we need the arts more than ever because we need the distractions, and the comforts of it.
While, of course, it’s not up to media to singularly give me validation in my illness, it’s important to give people representation. Having someone to look up to who is similar to you, who’s going through what you’re going through, is so huge. Giving that media to people could be life changing.
In my dream world, these illnesses would be portrayed differently.
We’d show people tackling relationships long term with a chronic illness.
We’d showcase the difficulties of going to work and coming home and being a parent while dealing with a chronic illness.
We’d see people tackling those feelings of feeling like a burden, or feeling like their life is never going to be the same.
One day, I’ll make those movies for you. However, what I want to do today is provide some examples for people who are feeling alone, and give them the media that they might be craving as well.
So, my fellow chronically ill darlings, let’s look for some media together.
If you’re looking for someone learning about their disease and processing a diagnosis, “This Is Us” and “Black-Ish” both follow characters receiving and dealing with diagnosis. In “Black-Ish,” Dre has type 2 diabetes, and in “This Is Us,” Kate has PCOS. Since one of my illnesses is PCOS, I did find it comforting to watch Kate go through that diagnoses, and come to terms with it.
If you’re looking for a love story, I really enjoyed “The Big Sick.” I love their relationship, and I related to the story a lot since I became sick two years into my own relationship. If you want teen romance with a bit of chronic illness sprinkled in, “The Fault in Our Stars” is a perfect representation of that. There’s also, of course, “Five Feet Apart.”
If you’re looking to follow actresses and actors with chronic illnesses, Sarah Hyland (from Modern Family) was born with kidney dysplasia, and has openly talked about her illness. Gina Rodriguez (of Jane the Virgin) has Hashimoto’s disease and has discussed dealing with and coming to terms with her diagnosis. Gabrielle Union (from L.A’s finest) is incredibly open about having Adenomyosis, and has a book about it as well. Nick Jonas (from The Jonas Brothers and Camp Rock) has type 1 diabetes, and has discussed it often and talked about how he felt his illness would hold him back.
If you’re looking to see someone dealing with chronic pain within their real life, I’d recommend, “Gaga: Five Foot Two.” This is a documentary based on Lady Gaga’s life. While the center of the film is not her fibromyalgia, it is documented, and there are several discussions of her chronic pain and pain flare-ups as well. Another great film for this is “Unrest,” which is a documentary video diary by Jennifer Brea about her chronic fatigue syndrome and myalgia encephalomyelitis. She talks about the stereotypes around chronic illnesses, and showcases how hard it is to go through her illness, and helps create a community for those with her illness, and chronic illnesses in general.
Some TV show recommendations are, “The Fosters,” where a few seasons in one of the main characters is living with a brain injury, and it deals with the process of recovery. Also, I know this might not be a favorite recommendation since it’s an older show, but, “Degrassi” had a lot of diversity when it comes to health struggles, and is one of the few shows that I feel like really tackles it more than once and doesn’t tokenize having chronic pain or illnesses.
If you have any other recommendations, let me know! There are a few out there I haven’t yet watched, but I’m always looking to see characters more like me on my screen.
Of course, the spectrum of media that we have to follow is small and disappointing, but that doesn’t mean it’s zero. I hope to portray more characters with chronic illnesses and disabilities in my work in the future, and I hope Hollywood follows suit. I also want to maintain that using health issues, chronic illnesses or disabilities as a plot device is not being inclusive, and the chronically ill community has a right to have mixed feelings about a film. We can be excited about opening up the conversation and having someone to look up to, and also take fault with tokenization or being used as plot devices instead of being seen as people. Lastly, when you are creating a character who is neuro divergent, chronically ill, or disabled, and then you use an actor who does not actually share those experiences, it’s more than frustrating, and it’s a major issue.
To my chronically ill readers, please remember that you’re not alone, and there are some characters out there for you. There are people that want to create media for you and about you. Sending you love and hoping you enjoy these recommendations.
Noura Boustany Jost is an actress, writer and videographer currently residing in New York City. Noura is passionate about social activism, and is often creating work that has political and social impact on today's society. She jumps into the hard topics, and helps tell stories for those who can't tell them themselves. Noura is currently working on publishing her poetry book, "Be My Ocean," and writing her novel. When Noura isn't working, you can find her gaming, hanging out with her two cats, or trying very hard to learn how to rollerskate. For more information on Noura please visit www.nourajost.com.