As most of you know I’m an obstinate being, which when dealing with ME, is a handy tool but as some of you may not know, this stubbornness isn’t always needed when dealing with the symptoms of ME, it’s actually often needed when reacting to people’s perceptions and comments.
Stop any randomised sample of people the next time you’re out in the street or at your local supermarket. Ask them “What is ME?”
Now imagine having ME and having to explain to people what it is you suffer from… believe me the lectures start to shrivel year by year, and as has happened to me in year five of my new life, they start to become incredibly thread bare, to the point where I’ve begun thinking F*** It!
Unfortunately, ME Awareness relies on patients and as much as I want to say F*** It, I can’t. I have to keep doing what it is I do, writing to our health minister, explaining to people what this illness is and what it does to people’s lives, pointing them toward relevant information and telling them about research. Knowledge is key.
On May 12th, International ME Awareness Day, I wrote to the health minister, Mr Simon Harris inviting him to attend a screening of the documentary “Forgotten Plague“. He responded saying he was unavailable. I also wrote to a newspaper, inviting journalists to attend. That invite was met with silence.
Simon Bourke, of the UL School of Journalism contacted me recently while writing an article about the ignorance surrounding ME, namely that of our government, thankfully, his words weren’t met with silence and his piece was recently published in TheLiberal.ie and can be read here.
Awareness is the golden key.