Being Open About My Disability Helped

 

Hi all,

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

 

james_sutliff_0

photo from Men’s Fitness Magazine UK

 

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.

img_6174

Recent Botox Injections

 

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 ☺

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisements

3 comments

  1. Disabilities come in many forms some are not visible to others at a glance. Noone should have to prove themselves. I have my own issues which is a chronic illness but, encouraged to snap out of it, dont talk about it. People are scared and dont understand but its lack of knowledge and education. Fear and ignorance will achieve nothing.

    Liked by 1 person

  2. Good morning:), I’m a Mom of a beautiful, talented and huge hearted 15 year old young lady who has Dystonia. She was diagnosed at age 11 and her 5 year “progression stage” of DYT1 (inherited) generalized Dystonia is almost at its max. I could go on and on about her story but I’m writing to say I’m glad you told your story and put it out there. The U.K. Has a lot of information, awareness, programs, studies, help for Dystonia patients. It amazes me that the we are so behind in this fight to be recognized as a real Neurological disorder. Even after Michael J. fox Parkinson’s foundation sistered up with Bachman Strauss correlating the two diseases and bringing even more awareness. I want to applaud you on your openness and honesty and also the in depth “coverage” you showed on Botox treatments and so on… let me know if you’d ever like to collaborate and do more for awareness. Love your style, and also my daughter and I go to the gym for an hour each day. It is helping her tremendously both inside and physically! And her disability is actually more visible with some posturing, foot drag, leg twisting, arm jerking and clenched fist too. 😘 Keep the fight on!

    Liked by 1 person

    1. Hi Shelly,

      Send my regards to your daughter.
      Honestly there is not much help or awareness here. Only specialists know about Dystonia not Dr’s or nurses.
      We fight and support each other xx

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s