The fiercely determined, hugely courageous, and at times on-the-floor-sick-and-knackered-from-the-effort Jen Brea has made a documentary on M.E. (I refuse, as ever, to call it CFS). The film is called Unrest and is now available on the digital platform to buy (rental and DVDs due shortly).
On the day of digital release I downloaded the film via iTunes (cost £9.99 for SD, £12.99 for HD – I’m skint so used the SD option and the quality was fine). As I have decent internet speed I could start streaming the film within seconds of clicking ‘buy’. I’d never watched a film via iTunes before and my fuzzy brain was dreading not being able to follow the instructions but the process was easy – having clicked buy and logged into my iTunes account everything was done for me and a window opened and the film was there. Brilliant 🙂
The documentary is part video diary, part relationship story, part educational, part medical, part activist but mostly simply human. It tells my 23 year ME-story in a nutshell and does it beautifully. Everything is there: from the fact that ME affects mostly women and has been labelled as ‘hysteria’ and not been believed as a result, to the lack of funding for research and treatment. The seriousness and the spectrum. The symptoms and the politics. The forced removal of children from their homes and the invisibility. The emotional impact and the cost to relationships. The stigma and the lack of education. And everything in between. That’s a huge feat to pull off in just 90 short minutes by a woman so sick some days she can’t lift her head off the pillow. I have no idea how she’s managed it and in my eyes she is a super star. I know what getting dressed and driving 15 minutes to a GP appointment takes out of me, let alone flying to another country, having to slap on make-up and appear on TV to promote a film.
I’ve watched it twice now, the second time making a few notes about things which stood out for me personally.
- At the beginning of the film, Jen is in the Emergency Room and Omar states “if you say too little they can’t help you. If you say too much they think you’re a…..kind’ve……mental patient.” This rang so true for me. As I mentioned in a recent blog post, I get brain cramps but my GP said not to tell anyone because they’d think I was nuts. So of course I’ve never had them investigated because I was too scared to admit to them. When you have severe M.E. you tread a very fine line between needing medical intervention and not saying so much that you are committed to a Psych Unit because your symptoms are so bizarre, and your tests are so normal, that Doctors don’t believe your experience is possible. Ergo you are imagining it and must be bonkers.
- Jen was told by her neurologist that the 104 degree fever which set off her symptoms, and the infection which was so severe it needed antibiotics, were as a result of some long repressed trauma which she couldn’t even remember. Would any man be told the same thing? Really? I’ve come across plenty of men with M.E. over the years and none were told their symptoms were psychological. They were believed even if they weren’t helped. Women, OTOH, are often dismissed as emotional hypochondriacs in a wide variety of illnesses, not just M.E. It makes me so furious I could literally punch the wall (if I had the energy 😉 )
- Jen Skypes Jessica, a severe M.E. patient in the UK who has been bedridden and unable to walk for 8 years. Jen asks Jess how she’s stayed sane and it’s a question I’ve been asked about my own 10 bedridden years. Coincidentally, like Jess, I lived in my head. I played tennis, feeling my body moving, the whoosh of the air, the warmth of the sunshine on my bare skin, the vibrations of the ball on the racket. I swam in the sea. I rode my bike. Danced. Rode my horse. Played ball with my (dead) dog on the beach. I self-analysed my life so far, coming to terms with my crappy childhood in the process. I know myself pretty well now, warts and all. Then after about 6 years I simply relaxed into the disease. If I died in my sleep then I died in my sleep. I was ill and too exhausted to fight it any more. It’s easier to live with something if you just accept it and don’t expect the days to be any different. I often worried that the boredom would make me literally lose my mind but if it did it did – there was nothing I could do about the situation. I contemplated suicide a LOT but was just too chicken to do anything about it.
- I chuckled to myself during the section on trying treatments. While I know certain supplements and alternative treatments help certain people to some degree it’s insane to think that a vitamin or a certain food can ‘cure’ this devastating, complex, neuro-immune disease. But I get the desperation. My parents spent £20,000 trying every treatment known to man when I first got sick, until we realized the whole definition of “chronic illness” is in the “chronic” part. I eventually saw a degree of improvement with no treatment whatsoever, other than a strict pacing schedule which, as I’ve said before, sounds easy but is the hardest thing I’ve ever done in my entire life.
- I cried like a baby at the Missing Millions campaign. So much wasted potential. So many invisible people suffering alone and literally in the dark. We have been ignored for too long. Far too long.
One of the most striking things for me personally when watching the film is that everyone who took part had caregivers. People who loved them and looked after them. And I didn’t have that, not really. Yes my parents loved me, but they both had full time jobs which neither were willing to give up. Yes they could have rented out their little apartment and moved into my 4 bedroom house to look after me, but they chose not to (in fact it wasn’t even a choice – it simply didn’t cross their minds). I asked the State for help and was told “we don’t have enough Home Care Workers for people with Cancer, so you stand no chance”, the implication being that people with Cancer were actually sick whereas I wasn’t. So for 10 years I lay in my bed alone.
If I needed a drink or a meal I had to get out of my bed and make it, despite the fact I could barely stand and my hands had turned in (like is seen in head injury victims) so I struggled to even pick up a cup. I went up and down the stairs on my bum for 4 years. I bathed once a week (if that) and when I had a seizure and was so weak I couldn’t get out of the water I just had to lie there getting hypothermic. If I passed out on the floor I lay there til I came too. There was no Omar rubbing my back or bringing me breakfast in bed. No Mum and Dad fighting my corner when I was turned down for welfare benefits and income protection insurance. No nurse tube feeding me, not even when I went an entire year unable to chew solid food. No-one calling an ambulance for me in the middle of the night when a cyst ruptured on my ovary. No-one taking care of my home or my cat, or me. And there still isn’t. It’s been a long, lonely and totally invisible road.
The film made me laugh and cry and empathise, but it wasn’t a depressing experience. Jen has managed to create a film which packs a punch but which gave me a sense of hope and camaraderie. A feeling that we may, finally, be on the cusp of something – recognition, research and a simple understanding of how horrendous this disease can be and how brave and strong are its sufferers. It was so good I watched it twice and will no doubt watch it a third time. Finally my story has been told.