Today is the first day in 2020, and I just realized that I have been chronically ill for a decade now. My journey began in 2010 when I suddenly developed severe symptoms related to an invisible condition that was later found to be Ehlers-Danlos syndrome, a connective tissue disorder I have been living with my whole life without knowing.
It took four years, all my financial resources, and traveling thousands of miles from my German hometown to the US to find out the reason for my progressing symptoms. At this point, I had lost many of the things I loved, but the worst part was that I was doubted, and my symptoms belittled on a daily basis. I was desperate. In 2014, I was finally diagnosed with Ehlers-Danlos syndrome, and many other related conditions followed over the years. The moment I knew what was going on with my body, I felt terrified and relieved at the same time.
Finally, I hoped, people wouldn’t treat me as if this is all in my head. They would take me seriously, I thought. But life didn’t get much easier with the diagnosis. I still had to fight for recognition of my chronic conditions many times, because most of the medical professionals I saw didn’t know anything about EDS, and often they couldn’t understand that just because they cannot see anything wrong with me from the outside, I can still be severely sick.
Especially this invisibility of my and so many other people’s conditions leads to misconceptions people around us have of us. It is hard for them to understand that disability doesn’t have a specific look and that one can be disabled without any apparent signs. I felt misunderstood so many times that it was almost as if I, as a person, became invisible to my surroundings. I hated this feeling.
I realized, if I wanted to be seen, I had to change these misconceptions and prejudices myself! And when I started studying journalism in 2018, I immediately knew what I wanted to do: I was going to produce a film about people with an invisible condition, specifically Ehlers-Danlos syndrome, called ’We Are Visible.’
Over the next 14 months, I traveled to Malta, England, Holland, Belgium, Germany, and the US, and filmed six families with EDS throughout their everyday life. With 'We Are Visible,' I wanted to show what it really is like to live with EDS and related conditions. My journalistic focus has narrowed down to trying to give a voice to neglected communities and to represent them in a truthful way. I thought my own background with chronic illness and disability opens up a different perspective compared to non-disabled journalists and helps me to accurately represent my community.
Even though I had never filmed before, I took on this feature-length documentary and released it in October 2019. It has won some small awards since its first release, and, more importantly, the response from the community I wanted to serve was really positive so far. This project started as a small student film, which I thought would only be seen by a few people and my teacher. I didn’t expect it to become so much more.
Looking back at my life in 2010, when my journey with EDS started, I can hardly believe where I am today. A few years ago, the fact that my life will never be the same as it was before 2010 would have made me sad. It was so hard for me to accept my disability and move on into a new era: One, where I am able to cope with my limitations and can be proud of what my life has become. But today I can look back am grateful for how my life turned out. And this is mainly because of my film.
'We Are Visible' didn’t only give a voice to its contributors. It also gave me a voice. It helped me realize that there are so many people with similar experiences to mine. All of their perspectives helped me to become a better person, a better journalist, and they made me feel validated for the very first time. They helped me for all of us to be seen.
I am not invisible anymore. We all aren’t.
We Are Visible!
For more information about the film 'We Are Visible' and Karina, check out the links below:
Official Film Website:
This website gives background information about the filmmaker, cast, crew, events, awards, and more.
Karina’s journalistic portfolio:
#ehlersdanlossyndrome #documentary #invisibleillness #invisibledisease #invisibledisability #healthjourney #wearevisible #health #diagnosis #eds #pain #chronicpain #raredisease #chronicdisease #brave #fightlikeawarrior #chronicillness #butyoudontlooksick #connectivetissuedisorder