‘Unrest‘ was released this year and is a documentary about people with ME/CFS. The protagonist, Jen Brea, started filming her daily struggles with ME/CFS and made a film from them. Other people’s stories are also featured.
‘Unrest’ picks up on several aspects of life with ME/CFS. One thing that emotionally touched me, was relating to some of the daily struggles and emotions that Jen Brea showed in the movie. Some experiences resonate with me, that probably most people with ME/CFS have gone through:
Going to extreme lengths with treatments in hope for some improvement.
Not being listened to by doctors, really, that people just don’t listen. How you have to think about what to say and how to say it, in the hope that some doctor might take what you are saying seriously. And often, no matter what you say, people won’t listen. This sometimes shocks and astounds me: we are all living in the same reality, but just how much your own perception and belief-system defines the reality of the individual. To the point that I feel, the doctor sitting across me, lives in a completely different ‘reality’ with his perception from the one I experience every day and try to communicate to him.
The everyday struggle with symptoms or how Jen’s husband said, that it is difficult to show, just how hard this is on a day to day basis. A struggle that most healthy people can probably hardly imagine.
‘Unrest’ also showed some parts of ME/CFS that I had gotten more aware of lately, but was still shocked to see.
One, how bad some very severe patients get, to the point of being completely bedbound, unable to speak, unable to eat. Even though my daily life is already very restricted by this disease, living with this level of severity, is hard to imagine for me.
Another, how bad the abuse by government institutions is that some people with ME/CFS face. The film describes the story of a teenager in Denmark who was forcibly removed from her family and institutionalized into a psychiatric clinic, her parents being blamed for supporting ‘false illness beliefs’ of her daughter. The dad mentioned, that the people who took his daughter possibly had some idea that she was being held captive, because she was in a dim/ dark room.
This abusive behavior by people with authority toward patients with ME/CFS still continues. A thread on phoenixrising discusses an ongoing case in the UK of a child, who is in danger of being removed from her parents for ‘failing to recover’.
All in all, I really liked the film ‘Unrest’. I thought it gave a good image of what things a person with ME/CFS deals with, and showed some different stories of people with ME/CFS. It also gave an impression of what place ME/CFS is in politically, socially and from a research point-of-view at the moment.
‘Unrest’ is currently on the short list of 15 films in the Oscar Documentary Category (Yay! :D) and I hope it manages to raise public awareness concerning ME/CFS. I applaud Jen Brea for the incredible effort it must have taken, to make this film while being ill.
Watch Jennifer Brea’s TED Talk here: