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It has been some time since we utilized this blog but as your new president and the previous blogger for the site, I would very much like to return to use of the site for this purpose. In previous years, I have utilized the site to share some thoughts on life with EDS as well as experiences I would like to believe are as close to universal as experiences will ever come in this lifetime. It is my hope as we increase the frequency of these posts, more of our online community will come to visit and make connections through here.

I will begin by saying, I would not be here were it not for this group. I have made connections I will keep for a lifetime that extend far beyond “just” having EDS. I firmly believe each of us can easily begin to see ourselves as so much defined by this condition because there is no single day or hour not impacted by it BUT I also think there is an importance to defining ourselves by the things that make us wonderful and unique and brilliant and beautiful away from this–and even within the EDS community, I have found people who share in what I love and I will be forever grateful for the people who understand what it is like to have EDS and what I call, “AND fill in the blank.” What I would consider one example is, “live with EDS AND love Taylor Swift.” These people are my friends and my EDS family. I hope you will find people who can help you on your EDS journey but also connect with you in a way that fills in your blank.

ANYWAY, (I know I tend to ramble), today’s topic is something that stems from a conversation I had yesterday evening with an amazing support group leader so incredibly dedicated to her Wisconsin region you would be hard-pressed to find another similar. It goes something like this, “nearly all of us tend to see ourselves as mild because we see another person with EDS we perceive to be ‘worse’ than us.” The conversations are along these lines and often with people who don’t even have EDS, “I have mild EDS. Some people with EDS can’t even work.” OR “I have mild EDS. Some people with EDS rely on a wheelchair every day and I can walk.” OR “I have mild POTS. Some people with POTS pass out every day.”

The “thing” is not that we actually are this perceived mild but so much that we don’t want to take away from another’s life with EDS. Instead of looking at how our symptoms improve or worsen day-to-day, we feel a sense of guilt over these things. For example, I work an intense job almost always more than 40 hours a week. At one point in my life, I was working this job, serving on the city council, and attending graduate school all at the same time. During this period, I almost felt like an intruder in the EDS community despite struggling so much with pain there were days I felt like I might die from the pain because there is no way I could fit with people who couldn’t work. Those same people who were unable to work but were still able to raise children likely felt mild compared to those who were unable to raise children and struggled to do much in a day.

Right now, the greatest struggle I have with my EDS is pain. I have never struggled with the fatigue of the condition. I have little concept of what that portion of the condition is like. This does not take away from “fitting” here nor does it mean I need to describe myself as “mild” by comparing myself to others any more than a person who cannot work would need to make themselves feel guilt because I am able to do so–I would never expect such behavior and would feel immense guilt were someone to do so.

You all belong here. You belong here regardless of wherever you perceive yourself to fall on some scale our brains have invented. You can have empathy for differences in situations without taking away from the parts of your own EDS affecting your life. On days you feel better than others, reach out a hand to them. On days you feel worse than others, take that outstretched hand.

A Bad Pain Day

Karina, a woman with short, brown hair and a pink flower in her hair smiles slightly. She is wearing big, black glasses and a red jacket

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose. 

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did! 

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and therefore  see it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people. 

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way. 

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.

 

Pencil like drawings of all the faces of the main contributors of We Are Visible.

We Are Visible – Open Your Eyes

 

Details about the Film

SYNOPSIS:

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

We Are Visible

SCREENINGS of the film:

In January, there will be screenings in Rhode Island, Colorado, and a larger one in Orange, California. If you want to join any of those screenings, have a look at the Event page: https://we-are-visible-film.com/events/

Duration: 

69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and 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 and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

More about the filmmaker: www.karina-sturm.com 

Trailers

Trailer 1

https://vimeo.com/349770539

Trailer 2

https://vimeo.com/349770866

Tailer 3

https://vimeo.com/348046371

 

Find out more:

IMDb

https://www.imdb.com/title/tt11100592

Official Website:

https://we-are-visible-film.com

Facebook:

https://www.facebook.com/karinasturm86/

 

Flyer for 'We Are Visible' featuring black and white pictures of the main contributors, all women and two children, as well as film award laurels, and the synopsis of the film.

We Are Visible – A film about people living with Ehlers-Danlos syndrome

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