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Tourette’s Syndrome – it’s not what you think

Tourette’s Syndrome – it’s not what you think

It’s not what you think. Tourette’s Syndrome, that is. 

You might think it’s all about swearing, inappropriate comments, and uncontrollable verbal outbursts.

This is the general perception – a common misconception and one prevalent in media portrayals.

But there’s rather more to Tourette’s Syndrome than this alone.

To underline once more, it’s not what you think.

This five-word phrase is the cornerstone of this year’s Tourette’s Awareness Month, which is underway, running until June 15th, this an annual attempt to raise awareness, increase understanding, and tackle the countless misconceptions that continue to cause such stigma and such pain.

Four years have passed since we wrote, right here on our blog, that ‘there are many myths and misconceptions about Tourette’s Syndrome. That it’s all about swearing and inappropriate behaviour. That it’s amusing, something to laugh at and shorthand for conduct that cannot be condoned.’

Not much – if anything at all – has changed during the intervening period of time.

Indeed, Tourettes Action – a charity that is striving to destigmatise the condition and improve the lives of those in its grip – say that, in such terms, we’re no further forward than we were a decade ago.

Hence the month-long campaign, which will include Tourette’s Awareness Day on June 7th.

Hence that phrase – it’s not what you think – and a renewed drive to challenge some long-held (and deeply unhelpful) attitudes and beliefs.

So what is Tourette’s? 

‘Something to be laughed at, quite honestly,’ admitted one respondent to this question, quoted in an excellent short film that Tourettes Action are using in an attempt to improve understanding and challenge such stereotypes.

The truth, of course, is otherwise, for Tourette’s is, to quote the charity, an ‘inherited neurological condition causing involuntary and uncontrollable motor and vocal tics, which can be painful, disabling and affect the quality of life of over 300,000 people in the UK’.

This is, to be quite clear, no laughing matter.

Tourette’s is not the punchline in a joke, but one of the least known and understood neurodiverse conditions around, one that causes great distress for around one in 100 school children in the UK and, as such, one that demands our attention and our empathy.

Imagine living with a condition that causes such feelings of frustration. Imagine being bullied and excluded. Imagine being scared. Imagine being laughed at.

This is the reality, this is Tourette’s – this another phrase that, alongside it’s not what you think, is being used to great effect this month, these both trending hashtags on social media that are helping to improve understanding and educate those unaware, for such things are crucial to breaking down barriers and putting an end to the myths and misconceptions that do such damage.

So what do we want you to know about Tourette’s Syndrome?

That it is a complex and misunderstood condition. That those demonstrating signs and symptoms are almost never making it up. That it is common to experience co-occurring conditions, such as anxiety, OCD, ADHD, anger, depression and autism spectrum disorders. That swearing alone is not a criteria for diagnosis. That tics, whether motor or verbal, are just one piece of the puzzle, and that those striving to live with and manage Tourette’s are often dealing with much more beneath the surface than that which you can see or, indeed, hear.

It is this, perhaps, that matters most, that we raise awareness to a point that we can begin to understand, we can begin to empathise and we, as a society, can be a little more informed and a little less judgemental.

Given the numbers of those it effects – children and young people in particular – it doesn’t feel as though this is too much to ask or to expect.

Take some time. Do some research. Help raise awareness and try to understand…

This is Tourette’s.

It’s not what you think.

Like to find out more about Tourette’s Syndrome and the common myths and misconceptions? 

Read our previous blog post here. 

For additional resources and information, visit Tourettes Action here.

You can also watch the following short videos from Tourettes Action:

What is Tourette’s Syndrome?

Tourette’s Syndrome and co-occurring conditions.

Tourette’s Syndrome – stop the stigma.

Celebrating Individuals with Tourette’s Syndrome.