Documentary Spotlights the Real Struggles of Living with Chronic, Invisible Illness

Karina Ulrike Sturm was tired of being unheard and unseen. Her film, We Are Visible, features her own struggles of living with Ehlers-Danlos syndrome as well as the struggles of individuals fighting pain stigma around the world.

 

As Karina Ulrike Sturm describes it, We Are Visible is a film project she recently completed as part of her journalism master’s program and the first feature-length film she has ever produced. What’s unique about the film is that it features real people living with the invisible condition Ehlers-Danlos syndrome (EDS)—including the filmmaker herself. The documentary conveys the chronic pain disease’s diversity as she followed families throughout England, Malta, Germany, Holland, Belgium, and the United States going about their daily lives.

PPM Editor Angie Drakulich spoke to Karina- the director and producer - about her motivation for making movies and how the film’s impact is changing her life, at the age of 33. We Are Visible has already earned awards from the Festigious International Film Festival, Impact Docs, New York Film, Los Angeles Film, and more.

PPM: What prompted you to make this film? What impact do you hope it may have?

Karina: Since I was diagnosed with EDS and many related conditions, I have used my passion for writing to raise awareness of neglected communities, such as people living with invisible illnesses. I hated that I often didn’t feel seen or heard and wanted to change this. I started to study journalism two years ago. The moment I learned that I was allowed to produce a documentary for my master’s thesis, I knew that I had to make a film about people living with Ehlers-Danlos syndrome and - in the broader context - about all invisibly disabled people, as we face similar challenges.

There are many things I would love to happen following this film. First, I want people with invisible illnesses and disabilities to feel seen and heard. They are not alone in their daily struggles. Second, I want the people around us to learn that they cannot and should not judge anyone based on their appearance, as many people live with conditions that do not offer any apparent signs. And third, I hope medical professionals may see the film and be prompted to learn more about EDS and the huge emotional side of being misdiagnosed and mistreated that patients face.

We Are Visible follows individuals with Ehlers-Danlos syndrome (EDS) around the world as they struggle to carry out daily activities and fight pain stigma. (Images courtesy Karina Ulrike Sturm)

 

PPM: Your film has been making the documentary and independent film circuit for only a few months and has already received high accolades. Did you expect this kind of positive and global reaction?

Karina: Yes, the film was released at the end of 2019, and no, actually, I expected the opposite. Since the film was part of my graduate work, I assumed it would only be seen by my teachers and maybe a few friends. I never expected it to become such a massive project and the center of my life. When I started to film, I planned on producing a short 20-minute project, but then I came across so many stories in so many countries - I  ended up filming people all around the world to produce a 69-minute film.

After sharing the trailers online, 10,000 views popped up pretty quickly. I couldn’t keep up with all the messages and feedback. As someone who doesn’t have any experience with filmmaking and the limitations stemming from my own health, I really didn’t expect these reactions, but I am super grateful for all the support I have received.

PPM: Many artists (whom also live with pain conditions) are trying to showcase what pain is and why it needs to be addressed. Take, for instance, the How I Hurt and This is Pain campaigns. Why do you think artists are grasping onto invisible conditions like pain, and what kind of role do you think they, as visual leaders and storytellers, can play in the changing landscape of pain management?

Karina: Artists use visual media because they have the potential to highlight the challenges people with invisible conditions face in a way that may be clearer than what other media provides. It’s really hard to describe what pain feels like using the written word. However, it is much easier to show people living with pain throughout their daily lives. Seeing one of my film’s contributors crying in the hospital because of the severe pain she has is something most people - disabled or not - can relate to. Documentary films in particular are a very useful tool for raising awareness and showing emotions.

PPM: Tell me a bit about your EDS. At what age were you diagnosed and how are you and are currently managing the condition?

Karina: I was mostly OK until I turned 24. After a medical treatment for my neck, I started to experience severe neurological issues related to something called craniocervical instability. I later learned that this condition can be caused by an underlying connective tissue disorder, namely EDS.  For many years, I tried all the conservative treatments I could find for neck instabilities, but my symptoms just progressed. Most of the doctors I saw did not believe me.

After many failed treatment options, I left my hometown in Germany and traveled to the US in hopes of finding better medical help. I underwent another conservative treatment that failed; however, this doctor did not give up on me. He noticed that not only my neck was unstable, but many other joints in my body were unstable or hypermobile. So he sent me to a specialist, who finally diagnosed me with Ehlers-Danlos syndrome. I was 28 years old.

Today, I use a combination of conservative treatments to help relieve symptoms. I take medication for pain and symptoms related to comorbid conditions of EDS; I wear braces for my unstable joints; I try to do physical exercises as much as I can, but I am very limited with my neck instability. And lately, I have looked into surgery, as sometimes those treatments can slow down the progression of a complication, like my craniocervical instability. Every day is a balancing act and no two days are the same.

PPM: We Are Visible addresses some of the stigma you faced when seeking a diagnosis as well as comments often heard by individuals living with chronic yet invisible illnesses, such as ‘You Don’t Look Sick,’ ‘It’s All in Your Head,’ or even, ‘You’re Too Young to Be Chronically Ill.’ Did you find, in making the film, that you uncovered any answers or effective ways to answer and end these myths?

Karina: Well, those stigmas were basically why I made this film. I was so tired of being judged all the time. And I do believe that films like mine can help to reduce the stigma. However, it’s also pretty clear that some people around us have never had and might never have much contact with people with invisible disabilities, and those people are hard to reach as they don’t have any reason to watch a film like We Are Visible. So I feel it is pretty tough to actually reach a non-disabled, non-chronically ill audience overall, even though that’s the audience that needs to learn about our stigma the most. I guess we all can just try to spread awareness and educate as many people as are willing to listen. We cannot force people to open their eyes and minds to what we have to say, but I do think that the more information is out there, the better.

 

The producer and director of We Are Visible, Karina Ulrike Sturm

About Karina
Karina Ulrike Sturm grew up in Germany but currently lives in San Francisco, CA. After finishing undergraduate school, she worked in the medical field, including as a biotech laboratory technician, for eight years. In 2010, at age 24, she developed symptoms related to Ehlers-Danlos syndrome (EDS), among other comorbid conditions, and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness to produce articles on medicine, science, and disability.

She has worked with blind journalist Belo Cipriani and produced three accessible short films called “Firsts” that feature writers with different disabilities. Her latest film, We Are Visible, is a non-profit, self-funded project supporting EDS organizations.

Where to Watch We Are Visible
We Are Visible is running in select theaters around the globe, as listed on the below site. Karina hopes that may it be available on streaming services by the end of 2020. 

ww.we-are-visible-film.com

Trailers:

https://vimeo.com/349770539

https://vimeo.com/349770866

 

 

Updated on: 02/24/20
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