I just read a Tourette syndrome (TS) post: What People Don’t Understand About Tourette Syndrome: A Lot which I think was pretty informative. In the piece, I learned about a young man with TS and watched his Tedx talk. He was highly intelligent, witty, and oh so “appropriately” funny.
He hit the nail on the head talking about the many challenges of living with the neurological disorder that affects approximately 1 in 136,000 children in the United States. I appreciate that he was willing to “go there” by disclosing some of the pitfalls but also the flipside of having it. ROCK ON, DUDE!
For instance, he says he wonders if he’d ever have discovered that he had a passion for public speaking, if he’d ever have found the confidence it takes, or met so many supportive and interesting people, if he didn’t have TS. So he put his fear and shame behind him and discovered some positives in his TS experience. But sadly, too many people are still suffering, hiding in the shadows, feeling depressed and humiliated because they cannot function without being laughed at because of TS.
Those of you who live with TS every day, know that depths of misunderstanding people have about it. But for my PatientWorthy readers who are just learning about it, let me try to give you a sense of what it’s like to live with TS.
Those of you over 50, you probably remember a famous episode of the hit show, Mary Tyler Moore… You’ll recall her sudden outburst when she roars in laughter during Chuckles the Clown’s funeral? Hmm…Well, that’s NOT a good example of TS cuz that was just plain old awkwardness or was it? Okay a better choice… Imagine, you’re at a funeral and all of a sudden, a grieving woman spews out the F-bomb—40 times in a row! Well, take that number and multiply that by 400 with a twist!
Yeah, 16,000 is the actual number of times another woman with TS uttered the word “biscuit.” Her relative actually counted one day. Most people develop their tics in early childhood, but some don’t receive a proper diagnosis until late teens or adulthood. And when this happens in public, or a job interview, a wedding or a funeral, it flames the fire of stigma. The disabling factor is the misunderstanding that OTHER people have—that’s the problem.
That’s why having support is so important! Here are some resources that might help:
In the UK, you might find help through Tourette Action.
There’s also this site which links you to Tourette organizations in Europe.