“I have pain in every part of my body.”
Filmed over the course of seven years, Complicated is a documentary directed by Andrew Abrahams that follows several young people living with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that causes the body to produce faulty collagen. Karen, one of the film’s subjects, explains it this way:
“Say you have to build a sturdy Popsicle stick house. You’re better off using a hot glue gun than Elmer’s glue—because with Elmer’s glue, your Popsicle stick house will surely fall apart. Whereas with a hot glue gun, once it’s together, it stays together. I’m built with Elmer’s glue—not strong glue—that falls apart easily. So, Ehlers Danlos Syndrome is when connective tissue is defective and so your whole body falls apart.”
Complicated is an unflinching window into what it means to navigate life with a complex chronic illness, not just for those diagnosed but for their families as well. The stories in the film are deeply interwoven—just as they were in real life. Many of the young people featured in Complicated connected with each other through the shared challenges of living with EDS.
Karen, for instance, found a mentor and friend in Morgan, one of the other young women in the film. Karen’s mother, Aurora Richards, said, “These families are families to us. I mean, when everyone else leaves you, ‘cause your life is just way too weird and complicated they can’t even begin to understand it, it’s these people that stay around. A lot of these girls in their twenties are like older sisters to Karen.”
Morgan’s mother, Laurie McCastor, reflected on the necessity of compartmentalization when faced with her daughter’s illness. “I have so many people say to me every single day, I don’t know how you do it. I wouldn’t be able to do it. Well, you don’t have a choice. You either build this wall of calm and protection around you, or you collapse.”
Fluctuating symptoms also can present ongoing challenges, as their severity can vary drastically. Dr. Anne Maitland, an allergy/immunology specialist, explained, “EDS is like earthquakes. You can have a 1.2 or a 6.4,” highlighting the condition’s unpredictability. This unpredictable nature not only affects the physical well-being of those impacted but also takes an emotional toll.
It was evident in the film how that toll weighed heavily on both the individuals diagnosed and their families. “We in the invisible illness community and chronic illness community have been through so much, and we, most of us, have tried anything and everything to make ourselves better. So, if we get to a point that we say we can’t do it, like, we really mean we can’t do it,” Morgan explained.
This emotional burden is a common thread throughout the film, especially when the families are forced to face the harsh realities of managing a life-altering illness. “They don’t know what to do with these complicated cases. They don’t know how to handle them, but that doesn’t mean it’s okay to make it feel like we’re doing everything wrong,” McCastor emphasized.
The emotional and physical burdens of EDS can seem too much to bear, but at the same time, families are experiencing the challenging nature of navigating a medical system that often fails to support them. Nearly every family in the film faced allegations of medical child abuse at some point in their children’s journeys, an experience that added another layer of trauma to an already untenable position.
Erin Daugherty, a nurse and mother of two children with EDS, reflected on the reality of being accused of harming her child, “We were really caught like a deer in the headlights…It was so horrific. I didn’t even know if I believed myself at that point.”
In all, Daugherty spent twenty-one months separated from her family, with limited supervised contact, to allow her husband to maintain custody after the allegations. In an interview with Disability Belongs™, Daugherty stressed the challenges of finding adequate care.
“I wish more doctors were comfortable saying, ‘I don’t know’ or ‘This is too complex for me,’” she shared. “There need to be more coordinated care centers. But that central provider needs to be someone who understands the main issues facing people with rare diseases—not just an average primary care physician.”
As a parent who has EDS myself, this film hit close to home. At times, it was difficult to watch. I have experienced medical gaslighting and complex symptoms. It took decades for me to be diagnosed, decades in which I didn’t understand why my body seemed to fight against me so often. Surprisingly, the hardest parts for me to watch were not about EDS specifically, they were about the pitfalls and hurdles of raising medically fragile children in a medical system that too often fails them. I am grateful to have built a team of providers that I trust to manage my illness, but I recognize that is a privilege that not all people can afford. Complicated is necessary viewing for anyone who wants to understand the realities of living with complex chronic illnesses—not just the medical challenges but the emotional and systemic ones as well. The documentary helps remind us that we need to support those with rare and nonapparent illnesses from both a medical standpoint as well as a societal one.
Complicated had its world premiere as part of the 2025 Slamdance Film Festival in Los Angeles on February 23rd.
