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.
Disbelieved by doctors, Jennifer Brea turns the camera on herself to reveal
the hidden world of ME in her film, Unrest
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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That one line from the movie said it all! I can hardly wait to see this movie, and so glad it’s up for an Academy Award! Maybe chronically ill patients will get more respect once it sinks in to the public consciousness!
This film was remarkable in so many ways. I thought I would have overhyped it in my mind and it wouldn’t meet my expectations, but it outdid them by far. Once it’s available in a better format (we can only get it as a locked iTuness download in Aus), I’ll be buying copies for all of my friends!
I think the DVDs are available to preorder here, not sure about Aus. But I was considering buying one and sending it round everyone I know one by one!
Thanks Laura for so beautifully expressing my experience. Having lived with ME for 25 years I also was very apprehensive about watching Unrest for the reasons that you described. I’ve never been as severe as Jen but the film is still absolutely telling my story. It was confronting to see it on screen in this way as I am so accustomed to this just being my life. The scene with Omar talking about it being harder when around others I so related to… contributes to the isolation. I’m lucky to have amazing friends and family that believe in the illness and say that I am the strongest person that they know. Fingers crossed for an Academy Award!!
Oh my gosh, Laura, you brought tears to my eyes. That is such a beautifully written, eloquently expressed piece. Thank you for sharing. Would you mind if I used it as a base to write a similar letter to my friends? I’ve had ME for six years now and brain fog is so bad lately that I couldn’t hope to write anything as true and moving as your beautiful words 💖💖
Hi Chiara, thank you so much for your kind words. That’s absolutely fine, please go ahead. As long as you link to me if you use my words but if you’re just using it as inspiration no need 🙂 x
Hi Laura. I was also an original backer of Unrest. After waiting anxiously for years, I have finally seen the film tonight. Once it was finished I was afraid and or too sick to watch. Now that I have, I am proud of what my contributions have brought to the world, something I’ve been unable to say for over five years now. Every frame of the film resonated so strongly for me. Thank you for sharing your similar feelings.
I have been sick many years and have good and bad years. I am the support secretary and am available to talk or face book or e-mails.