by David-Elijah Nahmod

Nothing in Karina Ulrike Sturm’s childhood prepared her for what was to come. The German native, who now lives in San Francisco with her husband, had a happy if uneventful childhood. It wasn’t until she was 24 that Sturm began to notice the symptoms of an invisible illness that at first she didn’t understand. When she traveled to the U.S. to see a doctor in Maryland, Sturm received a diagnosis that explained the years of pain she had endured: Sturm, who had taken to wearing a neck brace, was told that she was suffering from neck instability caused by Ehlers-Danlos Syndrome. At last her life began to make sense.

According to the Mayo Clinic, Ehlers-Danlos Syndrome is “a group of inherited disorders that affect your connective tissues, primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. People who have Ehlers-Danlos Syndrome usually have overly flexible joints and stretchy, fragile skin. This can be a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them.”

Ehlers-Danlos causes a great deal of pain and often comes with related conditions that can be debilitating to the patient, though the patient often doesn’t look sick. It’s an invisible illness that many people don’t take seriously. Sturm seeks to change that.

In her new film, We Are Visible, Sturm chronicles her own struggles with the illness, and interviews people from all over the world who share the condition with her. It’s a profoundly moving and eye-opening film that will hopefully find an audience outside of the Ehlers-Danlos community. It’s a film that calls for compassion and understanding, and explains in no uncertain terms exactly what Ehlers-Danlos can do to a person’s body.

Sturm tells us she experienced her first symptoms in 2010, when she was 24 years old.

“The symptoms I experienced in 2010 were mainly related to a severe cervical spine instability (neck instability),” Sturm tells us. “For instance, my arms would be numb all the time, I had a hard time breathing, my motor control was completely off, half of my face and my tongue were numb, my legs became weaker and weaker and I had to spend most of the day in bed.”

As with many other Ehlers-Danlos patients, Sturm suffers from a variety of other conditions related to her original diagnosis. She lives with POTS (postural orthostatic tachycardia syndrome), which affects her blood pressure, heart rate, and how her autonomic nerve system functions. This condition can be affected by even the slightest environmental changes, such as warmer than normal weather. Flare-ups can make it impossible to stand on her feet without fainting. She also has a condition called Mast Cell Activation, which affects her gastrointestinal system.

“I think it’s hard for people around us to understand or relate to us because for the most part, Ehlers-Danlos is an invisible condition,” Sturm said. “You can’t see the pain from the outside. And many of us are masters in hiding our issues behind a smile. The world around us doesn’t understand the concept of a disability that doesn’t have obvious signs. Oftentimes, this leads to misconceptions and as a consequence to many hurtful interactions.”

Sturm notes that many Ehlers-Danlos patients are called “fakers” if they use a wheelchair one day and are seen walking the next day.

“Since the condition affects us differently every day, we sometimes need assistive devices, but other days, we don’t,” she said. “Our environment, however, isn’t aware that disability is also a spectrum and that some disabilities are invisible.”

Sturm stumbled into filmmaking through journalism, which she began studying in 2018.

“As soon as I heard we could produce a film for our MA thesis, I knew I had to produce one about Ehlers-Danlos,” she said. “Additionally, one of my teachers in my journalism degree was a passionate documentary filmmaker and her passion transferred to me as soon as I studied her documentary filmmaking module. She inspired me probably the most throughout the whole journey, and so did my fellow students, who supported all my ideas even though my specialism, chronic illness and disability, was more or less new to them. This was extremely special to me because I had rarely experienced that people without a similar background like mine would understand me.”

There were many challenges that came with filming chronically ill people as a chronically ill filmmaker. All of her potential interview subjects are dealing with what Sturm calls a “non-predictable condition,” so making plans to film was difficult. Often times plans to film did not work out because the subjects might end up in the hospital shortly before filming was scheduled to commence.

“We had to be super-spontaneous with changing the scenes we wanted to share with the world,” Sturm said.

There were also challenges to her own health — filming caused Sturm to suffer consequences to her health that she has yet to fully recover from.

“Of course, there were lots of logistic issues since I filmed in six different countries,” she said. “And then you have to deal with many ethical questions when producing a film about chronically ill people. So overall, I had a problem to fix all the time, but I don’t regret any second of it, because this film gave me so much.”

As a film, We Are Visible is a profoundly moving experience, one which underscores the struggles those who live with Ehlers-Danlos Syndrome must deal with. There’s loneliness and isolation, as Jade, a young patient finds out. Jade lives with severe gastro-intestinal complications related to her EDS, and also contends with chronic pain. When her interview for We Are Visible was filmed, Jade had been in the hospital for a month, and had received no well wishes from her schoolmates.

The film opens with quotes of some of the things that EDS patients might hear from others: “But you don’t look sick,” “You are too young to be sick,” “It’s all in your head,” and “You are faking it.”

The latter was told to Sophia, a school-aged patient in Maryland who needs a number of assistive devices just to get through her day. Sophia’s mom, Ashley, also suffers from EDS, and is obviously having a hard time with the fact that her children are also sick.

One of the most moving interviews in We Are Visible is with Denise, a woman in Germany who suffered from a number of conditions related to her EDS. Though it’s a struggle, Denise tries to make the best of each day. Recently diagnosed with cancer, Denise passed away shortly after her We Are Visible interview was shot. In the film, Sturm expresses her gratitude that she got to meet Denise.

“What I was trying to accomplish with my film on one hand is to show EDS in a global context rather than focusing on only one specific country because even though access to healthcare is different in every country, the challenges people face are still overlapping,” Sturm said. “On the other hand, I wanted to not only emphasize the challenges we face every day, but also the incredible strength that every person with EDS has or have in order to cope with this condition. Media representation of people with disabilities is often quite stereotypical, and they use a frame of pity or the frame of the super-hero, neither show reality for disabled people. I wanted to convey what it is really like to live with an invisible condition and experimented with some journalistic practices to achieve this.”

Sturm hopes that non-disabled people will come to understand they cannot judge a person based on their appearance, and that rather than make assumptions, ask empathetic questions.

“And for our disabled community, I want to achieve that they can relate, feel less alone, and most importantly, I hope they feel validated,” she said.

On Sunday, January 12 at 2pm, We Are Visible will be shown at Chapman University, One University Drive, in Orange, California (near Los Angeles) in Beckman Hall, room 404. Sturm will be there to participate in a Q&A. The screening is free and the room is accessible.

Click here to RSVP for the free event

For more information on We Are Visible, please visit the film’s website.

Also, please visit Karina Ulrike Sturm’s personal website for more information about her journalistic work.

David-Elijah Nahmod is a film critic and reporter in San Francisco. He also has articles that appear regularly in The Bay Area Reporter and SF Weekly.