Insomnia has hit again and, although I hit the wall yesterday, I feel ‘normal’ and am getting on with stuff. I’m sure it will hit FULL FORCE later today though.
I am wondering how much of an impact all of my, and many others, attempts at awareness raising is making on a grassroots level. Over the past month or so, I have becoming increasingly aware of the blank expressions of supermarket staff when I make random M.E chitchat, of the fact that my neighbours have still not taken an interest in Foggy or M.E, and that I regularly see the bemused expressions of people I am delivering M.E presentations to.
Sometimes I feel like I have a split personality, I am Foggy’s P.A online and known by many around the globe for my M.E work. In my ‘real life’, no one has a clue what I do as a ‘hobby’ (ha!) and I regularly find myself explaining what I do to new acquaintances and they don’t really understand it. I think they think I’m just a crazy lady with a teddy…well…maybe they’ve got it partly right!
The M.E community is in such a social media bubble, I am wondering if we are struggling to connect with people in the ‘real world’. Not everyone is on social media. That is why I try to reach a wider range of people by arranging talks, and by being in newspapers, and on the radio/TV. When I am face-to-face in conversation with non-sufferers, I don’t feel we have made much progress with getting them to understand that M.E is not only a seriously debilitating illness but running alongside is a complex political movement. The other stuff that comes with the illness makes our illness unique. It isn’t just another chronic illness that can be dealt with by ‘mind over matter’. Recently, someone said to me that she didn’t like the term ‘sufferer’ and I should simply say ‘person living with M.E’. They felt that people with other chronic illnesses dealt with their illness and got on with life. I had brain fog so didn’t waste my energy replying. But, here goes, I use the term sufferer because that’s what we do…we suffer. If we aren’t suffering then why on earth are we putting in so much effort to make people see how bad our illness is? I dislike the terms warrior/fighter purely because, I don’t know about you, I’m finding that battling against the illness is a fruitless task. Saying ‘person living with M.E’ makes it sound like it is a welcomed housemate!
I’m also finding that many people over the age of 60 wonder what all the fuss is about. They tell me that they ‘didn’t have M.E in their day’. Actually…yes they did. It was just not spoken about and was even more of an invisible disability than it is now. Social media is a relatively new phenomenon, imagine having M.E decades ago and not having access to our support network?
I love our M.E community. The majority of us support, advise, and keep each other afloat. Thank goodness for social media!
and Foggy (obviously)