Living with Ehlers-Danlos syndrome (EDS) means navigating a medical system that is often unable to recognize, diagnose, and appropriately treat the condition. The documentary “Exhausted Existence – An EDS Story” (2024) by Jen Kain sheds light on these challenges. Through personal narratives, the film emphasizes both the struggles and the resilience of the community and spreads a message of “You are not alone”. Chronic Pain Partners was fortunate to preview the film that just premiered at Hollywood Diversity Film Festival in January 2025.
Filmmaker Jen Kain has crafted a feature-length documentary that captures the reality of EDS through a collection of compelling personal stories. “Back then, 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”, says Kain. The film provides a platform for individuals who have endured years of medical gaslighting, harmful diagnostic delays, and a lack of effective treatment, which will resonate with many in the chronic illness community. It shows the dynamic nature of the condition as well since we witness affected people with different abilities who, one day, walk with mobility aids, and later on use wheelchairs or other devices. It illustrates well how diverse the spectrum of Ehlers-Danlos syndrome is.
In terms of the visual style, the documentary employs a mix of storytelling techniques, utilizing self-recorded footage, Zoom interviews, and stock images to create a raw experience. Kain explains the reason for the blended style was “mostly budget constraints. I wanted to interview as many people as possible in person, but that wasn’t feasible.” Through diverse methods of storytelling, the sincerity and urgency of the message remain clear: people with EDS need to be heard, believed, and supported.
The film’s strengths is its focus on validation and encouragement. It shows so many different challenges that every person will relate to one or another contributor of the film. They often talk about everyday life which feels authentic and close to the heart. “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.” By bringing EDS to a wider audience, the film also contributes to much-needed conversations about chronic illness and invisible disabilities.
“Exhausted Existence” is part of a growing body of films that explore the intersection of chronic illness, disability, and the medical system within the US. Other currently premiered documentaries include “Complicated”, which examines the struggles of children with rare and complex diseases who are often dismissed or accused of faking their symptoms. “Take Care of Maya” presents a harrowing case of wrongful child abuse allegations against parents seeking medical care for their child. “Much More Than That” explores the intersection of disability and gender identity, offering an intimate look at the experiences of a family navigating these identities while living with EDS.
After going through a film festival cycle until early 2026, it will be available for streaming. For more updates and news, follow https://www.goodstuff-story.co/exhuastedexistence.
Karina Sturm
May 2025
