Today is M.E. awareness day. And I’m angry, because I am far too aware.
I am aware when I think about everything I have missed out on.
I am aware when others show a distinct lack of awareness and I am asked “what is ME, is that tiredness?” I am aware when that person is a doctor in charge of my medical care, when they are unaware.
I am aware when someone tells me how well I look when they visit me in a dimly lit room where I lay in bed. And after, when the PEM hits and my body breaks I am aware.
I am aware when my family have to watch me suffer and I see their pain at not being able to fix me
I am aware in my own pain and suffering, as I endure day upon day.
I am aware when I watch my friends slip away further and further into the depths of ME.
I am aware when I remember there is no treatment or cure. When I realise that despite that there’s almost no funding for research.
I am aware as we beg for better.
I am aware when I twitter storm and I recount the abusive healthcare treatment I have received in the attempt to stop yet more people going through it.
I am aware when I feel like I haven’t done enough, because as a sick person I can’t. As a sick community we do our best but can’t. We are aware.
I am aware when as a community we have to try reassure someone that it’ll get better, that it’s worth staying, even when we’re unsure ourselves.
I am aware when a patient dies, are community cries and mourns.
And I am aware that I am screaming into a void. I am screaming my awareness and it’s only heard by others also aware.
I am aware. All too aware. Are you?
