‘We Are Visible’ — How Karina Turned Advocacy into Art

‘What you can’t see can’t hurt you.’

It’s a classic and well-intentioned phrase, but we know it to be quite untrue; especially if you ask any one of the millions of people in this country that are living with a rare, ‘invisible’ disease.

Whether it’s scleroderma, cystic fibrosis, multiple sclerosis, or more — people living with an invisible disease often feel the extra pressure of explaining how/why/when they are sick, just because their symptoms are not as visible or apparent as those with other diseases.

It’s easy for many of them to feel ‘invisible’ — which is why Karina Sturm felt it was time to address that; and hopefully change it.

German born and now living in San Francisco, California — Karina produced and directed the documentary ‘We Are Visible’ which documents her journey and the journeys of others living with Ehlers-Danlos syndrome (EDS).

I had the pleasure of watching it in a crowded auditorium in Chapman University in Southern California just last month, featuring an introduction and Q&A session with Karina herself.

But before I get into that..

WHAT IS EHLERS-DANLOS SYNDROME?

Ehlers-Danlos syndrome (EDS) is a group of inherited disorders of the body’s connective tissue.  These disorders affect the supportive connective tissue of the skin, bones, blood vessels as well as many organs and body tissues. There are different types of EDS which are defined by their symptoms. Most commonly, the symptoms of EDS affect the skin and joints. It is estimated that 1 in 2,500 to 5,000 people have EDS worldwide.

To learn more about EDS, click here.

We’ve covered EDS before, including a famous reality TV star/drag queen who was candid about her EDS diagnosis.

And if Karina sounds familiar to you, she’s contributed to Patient Worthy before!

‘FAKER’

Before the movie was screened, Karina set the tone and theme of ‘We are Visible’ with a story that gets to the heart of the struggle with invisible diseases.

While she was excited to fulfill a childhood dream of going to Disney just the day before this screening event, her enthusiasm was tempered with a reality that has played out in her life many times, living with EDS.

I knew I needed to use a wheelchair [at Disneyland]… I am not afraid of using a wheelchair itself. In fact, I know how incredibly helpful mobility tools are for me and others. I believe using one regularly would give me more independence and prevent me from severe amounts of pain and bed rest. But I am not using one yet.
And the reason for this is how I have been treated by the people around me whenever I used a wheelchair in the past. I can hardly recall how many times people would whisper the words ”faker” when I would use a wheelchair at the airport, but then get up to walk the remaining short distance to the plane or a restroom. 
Karina went on to describe other moments in her life when she was judged for using a wheelchair; being accused of faking it to board an airplane early or being called lazy for using it and then getting up.
And indeed — by looking at Karina, she doesn’t look sick; but that doesn’t mean she isn’t sick or doesn’t feel sick or doesn’t have limitations and triggers that those without a chronic or rare disease do not have.
But imagine the stress and anxiety Karina and others like her carry with them, ON TOP OF the physical pain, discomfort, or limitations brought on by their diagnoses.
The latter may be unavoidable, but the former isn’t, or at least shouldn’t be.

WE ARE VISIBLE

According to Karina-

I was tired of being belittled and doubted by the people around me and felt invisible as a person. Then I started studying journalism and when I learned we could make a documentary for our MA thesis, I immediately knew that I wanted to produce a film about an invisible condition, specifically Ehlers-Danlos syndrome. 
She became her own advocate!
And so for 14 months of her life, Karina literally traveled the world — California; Washington, DC; United Kingdom; Germany; Malta; Holland; and Belgium — to not only share her story, but also the stories of others living with EDS.
We meet people like Denise from Germany who was Karina’s digital pen pal and a great source of help for Karina. Denise struggled with being misdiagnosed before she finally was diagnosed with EDS. Karina’s interview proved to be bittersweet; Denise passed away last year before the film was complete.
We also meet Jojo, a British mother who has EDS and has four children who also have EDS. When Jojo shared a video of her daughter’s hyper mobile (and bendy) joints online, she was formally investigated for child abuse. Jojo’s experiences hew closely with the experiences of many in the rare disease community; being misunderstood, thanks in part to disinformation and stigmas.
Karina frequently spotlights children with EDS, adding a layer of empathy and complexity to the discussion about managing an ‘invisible’ disease. We meet 14-year-old Jade from Belgium, who tearfully admits she doesn’t have many friends, due to not feeling adequately heard by her peers; and Debbie from the Netherlands (pictured below), who navigates her young children Lucas and Lotte’s health management.
Karina’s love and respect for these people and their stories shine through every frame, letting the viewer in on a world that may have been unfamiliar to us.

LABOR OF LOVE

For Karina, the experience of producing a multi-national project was physically grueling — especially on her.

The biggest struggles were the pain, exhaustion and my chronic GI issues that get worse with physical strain. I basically survived on pain meds and Gatorade because I was unable to eat anything during most times when I filmed.
Karina would often have to rest for weeks after only a few hours of work, limiting her mobility and work output. At times, even holding the camera was too painful for her.
One time, I was unable to walk or stand, so I would sit on an office chair and wheel around the living room of the family I was filming. Another time, I shot all sequences from one position in the room, because I couldn’t get up. 
But despite these difficult circumstances, Karina pressed through and created a substantial piece of work that will have made her sacrifices worth it.

WHAT HAPPENS NOW?

Karina’s goal is quite simple: Getting as many people to learn about EDS as possible.
In other words, she wants to make the invisible, visible.
I also very much hope that people understand more about invisible disabilities and stop judging people based on their appearance.
As a journalist and filmmaker, Karina (that’s her above!) also hopes that ‘We Are Visible’ will give a voice to those who may not have one and that its accurate and personal depiction of disability will ring true to those who may not see themselves in media.
And now that the final cut has been rendered, ‘We Are Visible’ will make the festival circuit rounds, and then hopefully land a home on a streaming service.
We will keep an eye on what happens! And thank you, Karina, for your film!
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Click here for to access Karina’s website, where you can learn more about ‘We Are Visible’ and Karina!

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