I understand how it feels when everything is against you. You feel useless and alone, and that you have nothing to give. Your disability controls your life.
By James Sutliff
I’ve had all those feelings and know that it’s a horrible place to be. But with a bit of positive thinking and some simple lifestyle adjustments, you’ll be astounded by the changes that you can experience. Yes, we are all different. We all have different abilities and live under different circumstances—but trust me when I say that only you can get yourself out of a negative, unproductive mindset. However, it is possible to be happy with your life, and to accept your disabilities and the challenges they bring.
When I was first diagnosed with dystonia, I thought my life had ended. I had to give up a well-established career as a plumber and heating engineer, and retire from playing rugby.
I also had to knuckle down and stop my disability controlling my life and my future. I am of the mindset that I am in the driver’s seat, and I manifest my life through the thoughts I have and the actions I undertake.
Since I learned that I had dystonia, I’ve started a new career in the fitness industry and have had the chance to model, which I never thought I would do! I have sponsorships from numerous companies and there’s lots of work and excitement to come. I’m sure there are still some tough times ahead, but I don’t let that deter me.
Living with dystonia
I want to take the time to explain how I cope with living with dystonia on a day-to-day basis. At 23 years of age, in the early days of having dystonia, I struggled. It was like having to deal with a huge punch in the face at what should have been the peak of my life, and it often became overwhelming.
Not every day is plain sailing, but immersing myself in my new lifestyle and keeping fit has been a great beacon for me. Not only does it keep me in physical shape, but it also keeps my demons and doubts at bay. Sure, I am slightly obsessive at times, but I would also say that fitness isn’t a bad obsession to have and I no longer feel alone in my journey.
I also want to take the time to explain how I am sometimes judged because I don’t look “disabled.” Dystonia comes in many forms—some of them more noticeable or visible than others. This is why I consider myself lucky. Not in the sense that I have dystonia, but in that my symptoms are less debilitating than they can be for others.
My dystonia affects my mouth, making me slur my speech and struggle with eating. My hands are also affected, which causes some of my fingers to involuntarily curl inwards, making it difficult to perform many day-to-day tasks such as fastening buttons or zips. I can sometimes mess about for 10 minutes trying to do them by myself. Botulinum toxin injections help to ease my symptoms for short periods of time.
Occasionally I am invited to model and I train hard each week. Fitness is a huge part of managing my dystonia symptoms, both physically and mentally. Working out makes me feel better about myself and helps me to forget that I have dystonia. I look at a photo of myself from the past and I think, “Look how far I’ve come.” That makes me feel proud.
When a disability isn’t visible, it isn’t always recognized. It’s a shame that society can be so judgemental and close-minded when it comes to disabilities in general and to invisible disabilities in particular. Over the past eight years, I’ve often been told “Look at you, you’re too fit to have a disability” or that I’m a fake. Those comments are hard to take, and that’s why I have stepped up my dystonia awareness campaign.
From now on, I want to show and share the vulnerabilities associated with dystonia. By posting videos of my speech and hand therapy sessions, I feel that I have helped others to gain insight. It’s now my mission to get people to step back and ask themselves how well they know an individual, including their strengths, struggles and situation, before they make assumptions.
James Sutliff is a personal trainer and disability coach from the east Midlands, England. You can read his blog posts at In The Life of James Sutliff (jsutliffblog.wordpress.com).