Chronic Pain Partners’ Karina Sturm spoke with Jen Kain, the filmmaker behind “Exhausted Existence”. Kain’s documentary delves into the world of Ehlers-Danlos syndrome (EDS) and the lived experiences of those affected by it. In this interview, Kain shares insights into the creative process behind “Exhausted Existence”, the challenges faced during its production, and how the film aims to raise awareness and make a lasting impact on the EDS community and beyond.

Karina Sturm: Tell me what inspired you to create this film?

Jennifer Kain: It all started when I discovered Dr. Cortney Gensemer’s research at the EDS clinic in Charleston. Her work inspired me to do something similar and create a documentary. At that time, I wasn’t connected to anyone else with EDS. I did not know you could follow people with chronic illnesses on social media, but the more stories from other EDSers I heard, the more I wanted to share these voices in a film. 

Sturm: Was this your first film?

Kain: No, this is actually my second feature documentary. My first one was about artists who made t-shirts in 2012, which I released for free. It was the start of my film career.

Sturm: What’s your professional background?

Kain: I have a production company called “Good Stuff Films” where everything we do is good stuff. It is a small business that does not yet pay the bills, so I am not making films full-time, but that’s the goal. In the meantime, I work at a regular job, currently teaching film students how to make movies. 

Sturm: What’s the central message you want people to take away from your film?

Kain: That you’re not alone. No matter what you’re going through, you always have someone out there even if you don’t think you do. If you share your story, you’re most likely to resonate with someone else. A writing teacher once told me, “The more honest you are the more relatable you are.” That quote has become my mantra with this documentary. I want people to tell their heart to make it the most relatable for everyone.

Sturm: Can you summarize your film in three sentences?

Kain: It’s a film that follows four very different stories of people who have Ehlers-Danlos and how they thrive, survive and advocate for themselves in a world that doesn’t acknowledge invisible illness.

Sturm: How did you find those people and their stories?

Kain: I started at a local Facebook EDS support group page. Then I searched Instagram using the typical hashtags, running down rabbit holes to find more people and that’s where the web started.

Sturm: Tell me more about the people in your film. 

Kain: I made sure that the people that were in the film all showed different aspects and abilities of EDS. It shows that EDS is very dynamic. For instance,  one of my main storylines, Heather, goes from being mobile to unable to walk  in a matter of a three-month period. Sammy’s character, on the other hand, is a young dancer. Her storyline shows the fear of being a young person and going through your sixth surgery which prevents her from dancing for a few months and that’s very hard for her. The film also dives into advocacy where I spoke to Laura Bloom and the Disability Clinic.

Sturm: You combined a lot of different visual styles. In your film, you show zoom interviews and selfie video footage. What led to that decision? 

Kain: I really would like to tell you it’s because of the pandemic but that’s a bad excuse. It was mostly budget constraints. I wanted to interview as many people as possible in person, but that wasn’t feasible.

Sturm: Tell me more about the production process. How long did it take to make the whole film and what was the biggest challenge?

Kain: Having a chronic illness was the biggest challenge. I made this film from 2021 to 2024 – my first years after getting diagnosed with EDS. The encouragement of the people I interviewed was the only reason I kept going and got the film done. The other big challenge was funding. It was so little, it felt like a stipend. It bought me equipment. It got me to Washington, but I didn’t get the animation that I desperately wanted. So there’s an aspect of the film that will never be fully realized now. Despite those challenges, I am seeing success. People really want to see the film, which feels validating.  

Sturm: Are you saying, with more funding, you’d re-edit the film?

Kain: I would probably refilm interviews and finish animation. The film is currently going through festivals for a one-year cycle. My goal is to fix all open tasks before streaming it to a wider audience. 

Sturm: What’s something you learned from this film?

Kain: I learned within the chronic illness community that you have to be really patient. You’re asking real people with real lives to stop their life for you to interview them and that takes so much energy from a disabled person. You ask them to spend three hours with you, up and active and that costs them a lot. And sometimes you go back multiple times. On the other hand, sometimes, I wasn’t even able to visit them repeatedly because either in my life or their life something happened. So in documentary film, you focus on the person that is the most interesting but also can give you enough b-roll. I didn’t even get enough b-roll for my main characters. So that’s why the film has some sub characters that show up for a few minutes. 

Sturm: Do you have any other film projects coming up?

Kain: I’m in pre-production on a ME/CFS documentary about Dr. Sujana Reddy and her story to become a board certified doctor despite having POTS and ME/CFS. The film is currently titled “Count the Cost” and we’re following her from the beginning of her career to becoming a doctor. The film will begin with footage showing her blogging her own story on social media, then my interviews with her will blend in. In the end, she takes the test and we’ll see whether or not she passes. The plan is to start filming in summer and finish post production by the end of the year. 

Sturm: When and where can people actually see your film?

Kain: The goal is to start streaming digitally and in-person in early 2026 after the film festival cycle. I’m giving it a year so I can hopefully get a distributor to put it on a platform. 

Sturm: How can people support you right now?

Kain: They can follow me on socials or my website. The website will have all the information about festivals the film got into and they can donate to the film to help make it better or help with marketing fees.

Sturm: Thanks so much, Jen! I hope you’ll be very successful! 

Kain. Thanks! Bye.

Karina Sturm

May 2025