I hope you are all over your Christmas blues and are back into the full swing of things ?
During this blog I wanted to take a moment to talk about why being so open about Dystonia is important to me. With everything I go through talking about my experience has helped me to get my story across and to help spread as much awareness for this not so known about neurological movement disorder.
Before I start I would like to ask, do I look like I have a disability? Would you believe if I told you I did? How are people supposed to look with a disability?
I’ve now had Dystonia for just over eight years and was only diagnosed just over four years ago. So as soon as I was diagnosed I did my research on Dystonia, found out there was not much information and hardly many people including doctors had hear of Dystonia. So my plan of action was to create as much awareness for it as I possibly could.
So me with already being big into fitness and as an ex semi professional rugby player, it seemed quite natural to turn to fitness to help me overcome my Dystonia both physically and mentally. Trust me when I say this has been the best medicine.
I had my first big break in 2014. I was asked to do an article about creating awareness for Dystonia and I was going to be featured in Men’s Fitness Magazine . Here is a link to my interview James Sutliff Men’s Fitness Magazine Interview
I always felt like I was judged by others because of the way that I looked, to some it seemed hard to fathom that somebody that seemed from the our side to be healthy and fit could have any sort of disability. I was even judged by other Dystonia sufferers who would not believe it and in the end actually deleted me of all social media.
So since Men’s Fitness Magazine Interview I’ve had numerous interviews, photoshoot’s which has created a hell of a lot awareness, more than I ever imagined. But I still felt like it was not enough and that people who didn’t know me still did not believe that I had a disability. So I knew deep down I had to be really open with everything, from videoing my hand and speech therapy sessions, photos of me being injected with Botox and even doing random talking videos showing my speech progression.
Its only probably been over the last year where I finally believe that people who don’t know me personally, now do believe that I actually have a disability. I find it mind boggling that I had to prove and show evidence of my Dystonia for everyone to see and to finally be accepted. So overall its the best thing I did being to open with everything.
I would like to finish with the quote the “Don’t worry about those who talk behind your back, they’re behind you for a reason.”
I hope you enjoy this blog and feel free to leave a comment our your life own views ☺