Laura’s Pen explains why she would love her friends to watch the film Unrest…
Unrest is a documentary about Myalgic Encephalomyelitis, the disease that has stolen the last five years of my life and several previously in my teens.
I was a Kickstarter backer of this film, and so got my copy before its general release. It has taken me two months to build up the courage to watch it.
The reason why is perhaps summed up best by a section of the film itself. The director and main subject of the documentary, Jen Brea, and her husband, Omar, have just been interacting with friends.
Omar says that their life seems so normal to them, but looking at it through someone else’s eyes makes you realise how not normal it is.
This is why I couldn’t watch it. The way I, and the millions of others suffering with this disease cope is by ignoring how hard this life actually is. Looking at someone else suffering and putting my thoughts into words makes me look at how truly difficult my life is and, honestIy, I don’t know how to cope with that.
I am lucky to have friends who believe in my illness and care about me. But I know how hard it is to understand something you have not experienced.
While Jen is much more ill than me when the film begins (although she ends up somewhere near my level) there are so many things that mirror my experience exactly.
I too was initially diagnosed with a conversion disorder. I too pushed myself too hard because of this and made myself irreparably ill. I too have wondered at the point of my existence when it is spent inside the four walls of my house.
I too disappeared from my life.
I am lucky that I can see my friends sometimes. That I can occasionally do fun things, although I suffer for it afterwards.
But the reason I want people to see this is to see what the rest of my life is like and how hard it is emotionally to cope with.
And most importantly, I want you to be as outraged as I am that we are ignored and stigmatised by the various Governments, by the medical profession and by society.
I want you to see the people unable to move from their beds so you can see just how awful this disease can be.
I want you to see how many of us suffer and how little funding goes into solving our disease.
I want you to know that every single thought expressed in this film is one I have had.
And I want you to realise that things need to change. The more people who watch and talk about this film, the more the view of our disease will change. And if public perception changes it will put pressure on Governments to face up to this very real and devastating disease.
I was 14-years-old when I was diagnosed with ME. I am now 30. Nothing has changed in that time.
It is time for change. It is time for Unrest.
“What terrifies me is that you can disappear because someone’s telling the wrong story about you.” – Jen Brea
Unrest is available on iTunes and has been shortlisted for an Academy Award.
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