We got the chance to ask Filmmaker and Director Victoria Suan about her newest project Becoming Incurable, which documents the lives of three individuals who suffer from debilitating chronic illness.
Hi Victoria, can you tell us about your new documentary?
Yes, Becoming Incurable explores the lives of three individuals living with physically debilitating diseases and their journey towards self-reliance on a very isolated, uncertain path. The film investigates what it takes to reconcile their pain and how they have rediscovered themselves through their illnesses.
What has the reaction been like in general when you explain the theme of your film?
When people in my immediate network see what I’m doing, see the trailer and follow the progress I’m making with the film, they’re absolutely excited. My network speaks highly of Becoming Incurable and want to see it succeed. The chronic illness community has expressed an even bigger passion for this film which is really apparent when you check out Becoming Incurable’s Facebook Page. So many people relate their own experiences with chronic illness when we’ve shown teasers for the film
It’s emotional to see what followers have to say in the comment sections so it takes me time to read them all. I have to take breaks in order to soak up what people have to say.
I’ve also received personal messages where people are thanking me for bringing these stories to light.
So, in a nutshell, I’ve received a huge embrace for creating Becoming Incurable with Sofia, Leo, and Charis.
They’re beginning to get some attention with the project as well, which is awesome.
Victoria, why do you think society is generally unaware of the suffering chronic illness brings to someone’s life?
In a nutshell, it takes the experience of chronic illness or having someone you love go through that experience to understand what that suffering is like. Hopefully, this film will give people an incredibly close understanding of that. That is my goal!
The reason I feel this way is because people who are healthy and able, like myself, unfortunately, don’t have the knowledge nor training to help someone in need. In addition, we are not taught how we should empathize with someone who is ill. Rather than empathise, we are told to be sorry for others who need physical help. So when healthy people like me grow up that way, we’re extremely disconnected from the experiences of people with chronic illness.
What about the chronic illness community?
People in this community understand what this journey comes with and can deeply connect to a shared loss to a former life
One thing I realised while making this film is that growing up, we’re not told to be interdependent. That’s largely not valued. Support systems would look incredibly different and more purposeful if we all, as people, leaned on each other a little more. Maybe we’d support, congratulate, celebrate, and reward each other for this.
Beyond a birthday or graduation or job success, especially for people dealing with chronic illness. I think we as healthy people would naturally come to empathise with the other half of our society suffering from chronic illness way more. This is all probably not as easy as it sounds but then again, empathy is powerful.
Has making this film affected how you feel about your own health and the health of others around you?
Absolutely. I feel very lucky that my body isn’t affected by chronic illness but it doesn’t mean that it will always be this way. I’m learning about a lot of other illnesses out there, such as ones that can develop after a big injury like RSD. I can be an injury away or a tick bite away from contracting an illness that can follow me for the rest of my life. Who knows if I’m carrying a gene that will cause something awful to happen to me, like what happened to Charis and Leo. Overall, I find that I’m more curious about chronic pain, only because I empathise. In addition, I realise now that health is everything. Period, end of story.
There shouldn’t be any reason why a person can’t have access to the care they need if they suffer from chronic pain. Our society puts so much emphasis on hard work, but for those who can’t participate, why should they be denied coverage? Is hard work superior to health? I’m just very passionate about this topic now that I’m beginning to see.
What does the word “strength” mean to you when you talk about
people with chronic illness?
Strength is a great word to describe people experiencing chronic illness for reasons that aren’t apparent. Sofia Webster, who is part of the documentary and lives with Lyme Disease, puts it best when she says, “sometimes being strong is saying no to things.” Her dream was to graduate college, but she had to leave in order to listen to what her body needed, which at the time was an extreme recovery. That process took her years. In the end, she learned a profound lesson in life that not many people learn at the early age of 24. For Charis, strength was overcoming a fear that you’ll learn about in the film, and also saying goodbye to her lifestyle and pursuing her dream career. For Leo, it was the same. I consider what people with severe chronic illness have to say goodbye to and that acceptance is a huge sign of strength.
How did you feel when you realised there was this huge community of chronically ill people connecting with each other on social media?
While I was researching chronic illness – this was before bringing Sofia and Charis into the picture –
I wanted to learn if there was any kind of cultural movement online or a potential audience for this film I was thinking about making. My intent was to make something centered around severe, chronic illness. I first discovered this community on a site called The Mighty. I was really impressive to see how they were portraying this community.
I also learned about “invisible illnesses,” which is what Sofia and Charis have. I discovered blog after blog and was excited about what I was learning and, of course, also saddened. I could see that the internet was the number 1 safe space for people to connect and discuss their chronic illness experience but this community really wants healthy people to get it too.
There weren’t many films that could offer that understanding. That’s actually how I determined what my approach would be for this film overall, and these people want to share their experience, not hold back. That’s why the U.S. Pain Foundation decided to support my project because they valued that bridge to understanding. I’m really thankful for their support and for the person who connected me to them. Their organisation was directly created by the chronic illness community.
What do you hope to bring to people with chronic illness who
watch this film?
I hope to encourage them to share this film with people in their network who could learn a lot by watching Becoming Incurable. Likewise, I hope to see a ripple effect where millions of healthy people start advocating for their own friends who struggle with chronic illness. That would be awesome.
You can find out more about the documentary at www.becomingincurable.com