Hidden battle
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Fivos Averkiou/Facebook
31-year-old James Sutliff likes to take care of himself. But what pictures of the body builder don’t show is his internal struggle to accept his “hidden disability”.
James – a fitness model from Queniborough in Leicestershire – woke up one morning in 2008 feeling unwell, his speech was slurred and he put it down to tiredness. But his symptoms got worse and his movements and speech became severely affected.
“I had tests for stroke and viruses. And I had CT scans but they all turned up normal.
“Then the movements in my hands deteriorated. My thumb started to curl inwards and became stiff.
“I found it hard to get dressed, open a drinks can and tie my shoe laces. I started to get depressed and I didn’t want to go out. I was almost a recluse” James says.
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James Sutliff/Facebook
James says: “I could not speak or eat properly.”
Finally in 2012 James was diagnosed with dystonia – a neurological condition which causes muscle spasms and contractions.
James had to quit his job as a plumber and began working-out intensively because it helped his condition and gave him a new focus.
Last month James uploaded a video on his Facebook page to raise awareness of what he calls his “hidden disability”. It’s been viewed 187,000 times and shared more than 950 times.
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James Sutliff/Facebook
James says he was scared of posting it because the form of dystonia he suffers from has severely impacted his speech. He says he hates the way he sounds and looks when he talks.
“I can’t actually watch it.” James says “I am someone who takes pride in my appearance and I find it embarrassing.
“But I am overwhelmed by the support I’ve received. I can’t quite believe the response.
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Alex Wightman
“People have contacted me from all over the place. I’ve had people come up to me in the supermarket to share their stories of dystonia.
“I’ve even had comments from sufferers in the US thanking me for raising awareness of the condition.
More than 800 people have commented on James’ Facebook video and it has been shared nearly 1,000 times.
A positive role model
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James Sutliff/Facebook
James with his wife Samantha who says she is incredibly proud of her husband.
Comments on the Facebook post include Susie Marsh’s post,” You are just awesome. My little boy suffers from dystonia so it’s great to have a positive role model out there who is bravely sharing his imperfections with the world to raise awareness of this terrible condition. I salute you.”
Stephanie MacNeill writes “No one would ever judge you for helping others while trying to help yourself. If anything we all appreciate you doing such an amazing and courageous video.”
Angus Defoe posts ” Inspirational, heroic. I wish you all the best James.”
What is dystonia?
Dystonia is a neurological movement disorder that can take various forms and affects many different parts of the body. Faulty signals from the brain cause muscles to spasm.
It can cause repetitive movements, twisting, or abnormal postures. Brain function, intelligence, memory and language are unaffected.
According to the Dystonia Society 70,000 people in the UK are affected.
I’ve accepted it. This is me
James refuses to let the condition affect his love of body-building.
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James Sutliff/Facebook
Going to the gym helps James with his confidence. But sometimes he needs the help of hand grips and hooks to hold the weights
He continues to manage his symptoms by tailoring his work-outs.
He also has to have Botox injected into his hands every three months to help relax his muscles.
James says, ” I have been through all kinds of emotions. There were days when I was depressed and days when I felt positive, but I have finally accepted it now. This is me.”
By Rozina Sini