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Tourettes Awareness Month 2022 Why is a diagnosis of Tourette's challenged still in todays society?

Updated: Jun 2, 2022

"You don't have Tourette's, You don't swear"
"Tourette's?, I've never seen you tic"
"That's not a tic, it's just a habit"
"I always do that, I don't have Tourette's"
"You can't blame all their behaviour on Tourette's"
"Tourette's is just an excuse for poor behaviour"

How many of us have been subjected to comments like the ones above?, Put down, belittled, told it's an excuse or not even a true diagnosis?

Why is a diagnosis of Tourette's (TS) challenged so much still in society today?. The truth is, it all comes down to a lack of education around Tourette's, that said, despite others level of education, no one has the right to challenge someones diagnosis!

It's not their fault, Tourette's has been misrepresented in the media since before I was born and many people learn basic education from shows and news articles about different conditions, so if all they are ever shown is individuals swearing, being inappropriate and presenting with big dramatic movements, its hardly surprising that they're confused when the person in front of them with a Tourette's diagnosis isn't presenting in that way.

FACT: 90% of people with Tourettes are NOT compelled to swear.

So why is Tourette's still so wrongly represented?......

........let's face it, swearing and dramatics sell stories!!

How many of you have seen, maybe even shared videos, of individuals throwing eggs or flour as part of their TS? Maybe videos of those in a supermarket cursing the whole way round? People find these videos funny, so they're viewed and shared but again this can misrepresent a huge portion of those with Tourette's. If we're truly honest with ourselves, would you watch/ share a video of someone 'ticcing' if their tics were minimal to the eye? Probably not.

A great example of how dramatics sell stories happened recently to a dear friend of mine who's son (with Tourette's) was raising money for Tourette's Action - the local papers caught wind and wanted to run a story, several communications were exchanged, they were good to go, but then they learnt he didn't swear and the story was pulled. This won't of been the first or last time something like this occurs.

How can we change this?

The reality is, Tourette's is neurological, often invisible condition, therefore, unless pointed out to others, can often go unnoticed by those around you.

Two out of the four in this photo have a diagnosis of Tourette's, of course there is no way of knowing this from a still photo but equally many claim "I've never seen them tic" even when they spend a day with them.

Despite often unobserved tics, they suffer pain, muscle soreness, throat infections, headaches, embarrassment, low self-esteem and the list goes on. So education is vital to those around them to ensure they're supported despite not presenting with a condition based on how the media portrays it.

Those of you who have worked with me in therapy or have attended Tictock Therapy's workshops, will of heard me discuss the importance of educating your circle as a bare minimum, but those of you who haven't heard of it before, what do I mean?

Educating your circle means just that. The more open you're about Tourette's and how it impacts you personally to those you see often, is one of the easiest ways to educate the people around you. We must remember that Tourette's is a spectrum, therefore it impacts everyone differently, and this is why it's so important to be open with how TS is for you.

The only way for us to make a change is for more of us to share our personal stories on how having Tourette's doesn't mean you swear lots and how having Tourette's is sometimes unnoticed to others but can be a life debilitating condition.

What are the implications of us not trying to fix the misconception of Tourette syndrome?

If we do not advocate for our Tourette's Community Now, we have two main issues

  1. Our current fellow ticcer's continue to be judged, challenged, not believed, called lairs, bullied and not be accepted. Likely resulting in low self esteem, isolation, and depression.

  2. Our future ticcer's having to continue to also be subjected to the above, if not more.

We must bare in mind at this point the genetic link with Tourette's, therefore, its highly likely your children or grandchildren could very well be the future ticcers, use this to give you the confidence to stand tall, educate others and advocate for ticcers now and in the future.

Below are some key points to help with educating those around you.

  • Tourette syndrome is a neurological, genetic condition that causes individuals to make involuntary sounds and movements called tics. These tics usually start in childhood and are often linked to other co-morbid conditions which individuals have alongside their tics.

  • More often than not the co-morbid conditions present themselves as/ but not limited to, obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), Anxiety Disorder and/ or learning difficulties. These and other co-morbid conditions are discussed more in the ‘co-morbid’ section.

  • ‘Tics’ really are just the tip of an iceberg of a very complex and misunderstood condition, the co-morbidities that exist with Tourettes are often more complex for the individual then the tics themselves.

Tourette Syndrome is part of a spectrum of Tic Disorders. Within the spectrum you will hear of:

  • Tourette Syndrome ~ this is when you have multiple motor and one or more vocal tics present for a minimum of one year. These can wax & wane in this time but must be present.

  • Transient tic disorder ~ Motor and/or Vocal tics that last only a few weeks or months.

  • Chronic tic disorder ~ Motor OR Vocal tics (not both) lasting more than a year.

  • Many individuals with tics experience a feeling immediately before a tic occurs, this is called a premonitory urge.

  • Tics are sometimes suppressible and often suggestible.

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