AWARENESS WEEK: ‘Going public has been a positive experience.’
By Jackie Sloper, a member from Brighton.The first time I remember hearing the word dystonia, I thought 'what the hell is that?' Until five years ago, my life was pretty much normal with a family and partner I love dearly. Then this terrible condition struck and impacted on my whole life.
As Awareness Week approached, I decided to visit my local evening newspaper and ask a reporter if he would help me to highlight dystonia. He agreed and a few days later a friend rang me to say I was on the newspaper’s web site. Goodness, when I looked, there was a picture of me with the headline: “Woman suffers from rotating head”.
My partner and I fell about laughing. I felt like something from a horror film. No publicity is bad I thought, at least Dystonia was mentioned. The next day two freelance reporters arrived asking questions, took photos and left. The evening newspaper writing a small piece in their column followed this.
Then one afternoon, while we had friends round, the BBC South Today presenter, John Young, came with his photographer and interviewed me, as he was keen to put the feature on the local BBC TV station. After agreeing, the feature was aired throughout May Bank Holiday Monday.
As a result of this publicity, I had a letter from a doctor suggesting medication; letters from other sufferers; ‘Pick Me Up’, a glossy national magazine, carried a story about my condition, under the heading ‘true health drama’. Friends and neighbours have been great and even my family, who knew very little as to my real condition, have been amazing. My only hope is that it has helped, even if it’s in only a small way, others to speak up, fight and understand what this condition is really like.
On a personal level, my condition has meant I can no longer read, drive or shop on my own. The pain is constant, as muscles pull my neck left and forwards. Sleeping is impossible without medication, as it seems to get worse lying down. Every task is difficult, from going to a dentist to finding a hairdresser. This damned thing has invaded every area of my life and the utter frustration, despair and pain cannot be measured.
Going public has been a positive experience for me. I just hope it has helped others not to feel embarrassed but to fight, speak up and demand a properly funded service for all with dystonia.