It's been almost two years since a combination of anger, frustration and sheer desperation led me to set up my (very) tiny corner of the web. Since then I have shared personal information I long sought to keep hidden. I've put my face and my name to an often misunderstood condition. I bit the metaphorical bullet in sharing my words with not just fellow ME sufferers and strangers from all corners of the world, but also with my family and friends. In writing my blog I wear my heart not just on my sleeve but on the World Wide Web.
For someone who is by nature more private, keen to just grin and bear it and quietly get on with things, this is an incredibly daunting prospect. Yet for me, there is nothing more important. I write my blog because ME patients must be taken seriously, because things have to change, and because this story needs to be told.
My aim for activism is simple: to tell the truth. I don't have all the answers; I'm far from an expert! Yet lived experience and narrative wield enormous power. Though it may not be the most aesthetically pleasing or attract millions of viewers, in writing my blog I can tell my story. I can tell it as loudly, as rationally, and (hopefully!) as eloquently as possible. I can show that this is a real disease affecting real people - good, kind, intelligent people; people with promise, with talent, with their whole lives ahead of them. People who have done nothing wrong - people no different to any of you reading this now. I was only 14 when a seemingly innocuous virus left me with this cruel, debilitating illness. It has completely changed my life. M.E. is not fussy; it truly can affect anyone at any time. So while my main and undying motivation to keep raising funds and awareness is my fellow M.E. patients - particularly those who are too unwell to speak up for themselves - I think also of the hundreds of people who will be taken from their work places, universities and classrooms and plunged into the menacing uncertainty, scandal and despair of this illness. In hearing other voices and connecting with others who live with M.E. - many at such a severe extent that their condition has been compared to late-stage AIDS - I realise that what was borne out of a very personal anger and frustration at my own situation, now continues through love, empathy, and a collective need for treatment, research, and for dignity.
Here my words cannot be torn down by all manner of arrogant, ignorant consultants; the reality of my condition cannot be ripped apart, dismissed, or denied. My true, subjective experience is written here in black and white, ineffaceable. In writing, I have a voice. When you've had the traumatic experiences I've had, when you've been agonisingly denied and misbelieved and misrepresented for so long, having a voice is the most powerful, most empowering and most incredible thing in the world.
ME is too often denied, ignored, and dismissed; those who suffer from it are regularly neglected, misbelieved and even blamed for their illness. I speak out because I believe this is so incredibly wrong - and because I believe that through telling our stories, through telling the truth, we can change this.
For too long, my illness was a taboo. I didn't talk about it, I was embarrassed whenever it was mentioned, and I couldn't bear to even say the letters M-E. I was ashamed of my illness; I saw it as a personal weakness. I couldn't keep up in school, and when I was able to attend classes I was so often painfully embarrassed as my condition made itself visible in regular faints and collapses. In many ways, I felt like a failure.
Yet in confronting my ill health - and the scandalous situation that surrounds it - by volunteering for multiple ME charities, fundraising, and speaking out, I am so much more at peace. I am no longer embarrassed of my illness and, in doing what I can to raise awareness of the realities of M.E., I feel less frustrated in the knowledge that I'm doing what I can to ensure that, one day, everyone will know the truth about this awful disease. So, Why blog? In the words of the final scene of the film The Hours...
To look life in the face.
Always, to look life in the face, and to know it for what it is.
At last to know it, to love it, for what it is...