I will always remember 26 May 2016. It was the day when, as a collective community, we made the invisible, visible across the world.
I’ve already written about why I felt so compelled to protest (click here) I was relishing the opportunity to protest for myself, my virtual friends, and the global ME community. Only a severe relapse would prevent me from going.
The journey to London was humbling. I was struck by the irony of being cheered on by countless numbers of people from around the world with ME wishing me well in the protest! All of them, without exception, wished they could be there in person and the privilege of being well enough to take a simple journey to London was overwhelming.
Seeing the shoes being laid outside the Department of Health really took my breathe away. I knew the personal back stories of some of the people represented by the empty shoes, and could only wonder at the others. What has been the cost of people’s loss in their social lives, families, careers, hobbies, passions and dreams? How can so many go silently ‘missing in action’? Who is going to take notice and care enough to help?
Sadness, loss, compassion, frustration, anger, hopelessness and desperation were all swirling around as I read the accompanying labels to each pair of shoes.
A man came to ask what we were protesting for and was genuinely surprised when I said ME. “Oh, I thought that had disappeared years ago!” he replied. It summed up the whole reason for being there. We live with an invisible illness yet some how have become invisible ourselves!
We came from different backgrounds, professions and were in different stages of life and health to sit and protest but we all shared stories that were instantly recognisable: we had all been let down by health care that has been missing for us and in many cases has caused further harm.
May 26th was the day we made the invisible, visible! Dozens of photographers lined up to take our photos and the events were filmed for Canary in a Coal mine. Department of Health staff came out of their offices and took note, members of the public seemed genuinely curious and empathetic, Members of Parliament even came and offered support. Social media was buzzing with excitement and we were trending on Twitter and Facebook.
I tried to post as much of the day as I could on twitter but in so doing missed a lot of the other #MissingMillions events that were happening worldwide but do follow the hashtag or ME Action for further coverage.
As I headed home to St Pancras station a guy was playing “I will survive” by Gloria Gaynor on one of the public pianos and I was soaring high! I boarded the train and read a snippet of news about our protest in the London Evening Standard and reflected on what a significant day it had been.
Outside of our own ME bubble however, there is still a long way to go to be visible. For all the photographers that came, I’ve yet to see anything in any other newspaper about our protest. (Maybe we should start a #MillionsMissing-Missing campaign!?!) The Evening Standard’s first comment was from a self proclaimed ‘Unwise Guy’ who typically demonstrated why we need this illness properly researched, funded and understood.
However, May 26th was a fantastic platform to start from and I am more optimistic than ever that hope is within our life time. Huge thanks must go to ME Action and Change for ME and the dedicated small teams that made this happen. The excitement I’ve experienced seems to be shared by those that were part of the virtual protesters from their homes. I do hope we can put some of our past hurts behind us and build on what we’ve collectively achieved this week. I live in hope that one of these days it will be the stigma and disease that disappears and not us!
I’m sharing one of the stories of those that couldn’t attend the #MillionsMissing in person. Tanya Marlow was the first person I met (virtually) with ME. It turned out we had both shared mutual interests and friends in our real lives. It’s thanks to Tanya that I was brave enough to leave the shame of the illness behind me and she is a constant source of inspiration. She is also a fantastic communicator and writer. Please read her #MillionsMissing story here: ‘Why I’m giving up my tainers’