This film is going to close the gap on EDS education


by Jeannie di Bon, October 28th, 2019

Estimated reading time: 2 minutes

I watched it one Saturday afternoon. I was actually having a bad mast cell flare and was in bed, feeling pretty miserable and sad. I wanted to connect with people like me who also knew what it is like to live with EDS. I knew the film was about people living their ‘normal’ lives with EDS, but Karina had kept the content pretty secret. I wasn’t sure what to expect.

I was not disappointed. By the end of the film I felt the presence of what a strong community we are. Firstly, Karina has EDS herself and to travel to interview the six participants was such an achievement. Her passion shines through and I am full of admiration of Karina to complete such a project.

The film is empathetic, delicate and thoughtful – shining a much needed light on the ‘behind the scenes’ lives of families living with EDS. We meet different people in different stages of their lives – some of which are just heart-breaking. The film shows us clearly the daily struggles that many people experience for themselves and their children. Lack of ‘visibility’ is a problem with a condition like EDS. People are used to hearing ‘but you don’t look sick’ – which doesn’t make it any easier. Bullying and name calling are part of some people’s daily experience. The film displays how an invisible disability can be hard to accept by society. Either you are disabled or you’re not. You can’t look OK and be disabled, apparently. I guess it can be hard to understand if you don’t take the time to get to know the real person.

But not one of the six participants in the film felt sorry for themselves. Remarkable strength. The film demonstrated resilience, strength and determination – qualities I believe you need to survive in the EDS world. It shouldn’t be a fight, but for many people it is. We Are Visible is going to be a valuable tool to show the world what living with an invisible illness is really like. Yes it can be cruel and unkind, but you also come across these brave, honest individuals who open up their lives to us. For that, I am so very grateful. This is needed. Thank you Karina for taking the time to make it and spread awareness.

If you’d like to learn more about Karina’s journey and her film, visit her Facebook page for screening updates in your area or her website.

Thank you Karina for all your hard work, dedication and passion.

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