Some of you may know I have Myalgic Encephalomyelitis, or ME/CFS. Many of you will have no idea of what that actually means beyond “being tired” which is so far from the truth. For too long the medical profession & the media have treated ME/CFS as a joke, a mental illness, or fakery. It is none of the above, and the mindset is insulting to every single one of us.
It affects waking & sleeping. It affects cognitive thinking and speech, memory, writing and listening. It causes seizures and myoclonic jerks. Clumsiness. Bowel problems. Joint pain. Muscle pain. Exercise intolerance and PEM (Post Exertional Malaise) which can last for weeks or months. Flu like symptoms. It affects every minute of waking life every single day.
In the face of ignorance and incompetence from those with whom she sought help, Jen did what many of us do. She went online and found a tribe. Somewhere where we are heard, seen and understood. Where we are validated.
She then went much further, eventually creating and filming Unrest. This is her story, but it’s also our story. Thankfully I’ve never been as severe as Jen, I pray I never am.
But I have periods of days when I am invisible, when no-one sees me. I don’t get dressed or leave the house. When I wake from an 18 hour sleep then have a three hour nap. When holding a conversation is impossible. When simply sitting up is just too hard, let alone leaving the bed or sofa. I am too often one of the #millionsmissing
Please watch #Unrest – it’s now on Netflix. The link to the trailer is below. Yes it’s hard viewing. But it will open your eyes to the reality of the lives of millions with ME.
2 thoughts on “Please watch #Unrest”
I got to see it last week. It is very good.
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In a classic case of irony I had to watch this over two evenings, as I got about an hour in and suddenly needed to sleep! She’s done a brilliant job of both sharing her truth and the truth about ME without diving into inspiration porn (which is exactly what most Hollywood films do) or being overly emotional. It’s not an easy watch but it’s incredibly important.