A few weeks ago I went to see an amazing documentary about M.E. called Unrest. It has been made by Jennifer Brea, an academic who has severe M.E., and she’s taking it around the world to raise awareness of the condition in order to promote understanding and prompt calls for more research into M.E.
I wrote about the impact that Jennifer’s TED Talk had on me in ‘The Missing Millions’ (link below) and this documentary expanded on her original ten minute talk. I spent the majority of the 90 minutes in tears as I recognised the horrible symptoms and desperation I have endured and felt the pain and grief of the severely disabled people in the film. Watching the patience and occasional frustration of the careers, both family members and partners, caused further tears as I remembered my usually rational mother crying, my father completely at a loss at what to do and my ex-boyfriends’ fear and frustration. I felt angered at how M.E. has been portrayed in the media and ignored by doctors. Worst of all is how M.E. is treated as a psychological condition in some countries and children with severe M.E. are being taken away to psychiatric wards away from their families (who the psychiatrists blame for the child’s illness). Towards the end of the film Jennifer showed the #millionsmissing campaign which took place last year in which people who are housebound with M.E., and therefore missing from society, sent shoes to public squares all over the globe to highlight how the condition and those who have it are ignored.
It made me feel guilty. I saw the #millionsmissing campaign but didn’t take part. I’ve shied away from the M.E. community as I often found other people with the condition far too negative to be around. I ran a support group for young people with M.E. when I was in my early twenties but I’ve done nothing much since. I haven’t wanted to associate myself with it as an adult for fear I’d end up as bitter as the other people with M.E. I’ve met. I’ve always tried to stay as positive as I can. Watching the film made me realise that I am so lucky to have never been severely affected for any length of time. I have a responsibility to look after myself so that I don’t become severely affected by M.E., I owe to myself and to those who are. I also have a responsibility to be the voice for those people and fight for their rights because I am able.
The last two months have been a period of unrest for me. I was unsure of my next steps; the landscape around me was constantly altering and the stress made my M.E. and mental health symptoms worse. I suffered another mental breakdown the day after my 26th birthday and my worsening M.E. has left me feeling very vulnerable and scared on a number of occasions. However, I have finally found a relevant job that I hope I will be able to manage whilst finishing off my degree and a nice place to live for a few months. I have made the decision to spend the winter months hibernating and really looking after myself, just myself. I have found a place to do relaxation yoga, somewhere to buy healthy food and I have a little circle of friends forming that I can meet up with. Yesterday I finally felt ok with my decisions and more positive about the future. Hopefully my symptoms will begin to settle down now and I can start to enjoy my new life but also make some steps to help others less fortunate than me.
If you get the opportunity to see Unrest, please do. You can find more information here: https://www.unrest.film/