Questions people ask us about Tourette’s Syndrome

The number one question people ask us about Tourette’s Syndrome is why we think we’ve got it. More specifically, why do think Goldilocks and I have Tourette’s Syndrome, and why do I watch Red Riding Hood like a hawk for the first sign of symptoms? That’s about three questions, so let’s break it down.

While I always knew that I twitched a little, when I was anxious, and sometimes made strange sounds, because no one ever commented on it, I assumed that I’d adequately masked it, and that no one else knew. I put it out of my mind to such an extent that I hardly knew, consciously, that I was doing it. That changed not long after I got married. I was just about 19 years old, eating dinner with my husband at my sister-in-law’s house. She and her husband had prepared a delicious pasta dish with broccoli, bacon and white sauce. By the end of the evening, my face was an animated playing field for every thought and emotion. My sister-in-law asked me about the twitching, and I realised my secret was out. Later, I found that my friends and family had always seen (and even heard) my tics. They’d been kind, and polite, and eventually they’d stopped noticing, as I had.

I never forgot about my tics again, but they still had no power over me. It was a simple part of who I was, and had virtually no impact on my daily life.

With each pregnancy, the tics got worse. After Goldilocks was born, the tic notched up a couple of levels, then plateaued. The only minor anxiety I had was when I noticed little Goldilocks mimicking my tics. But she seemed to outgrow that.

When Red Riding Hood was born, my tics got dramatically worse. Sometimes, for hours, my brow would be creased, my cheeks puffing out. I felt like I couldn’t control my face or hide my tics any more, and I became something of a recluse. After a number of years the tics subsided slightly, but the furrows on my forehead and around my mouth are here to stay.

I began to suspect.

When we were investigating Goldilocks’ poor performance at school I kept coming across the words: Tourette’s Syndrome. It seemed to fit with so many of her symptoms and traits. She didn’t have specific tics at that stage (tics usually only begin to manifest around age 8, and can take up to age 18 to  become apparent). What really concerned me, in the absence of a clear Tourette’s diagnosis, was the fact that Ritalin is known to exacerbate Tourette’s Syndrome and tic disorders (and interesting how many children with ADD also have Tourette’s and vice versa).

The story of Goldilocks’ ADD adventure is the subject of another post, but the Ritalin she took made her tics much worse. Within a year, it was clear: she had a tic disorder. I looked it up online and found that Tourette’s Syndrome is characterised by vocal and motor tics. Apparently you need at least two of one and one of the other for it to be Tourette’s. When I asked the paediatrician who prescribed the Ritalin whether he thought she had Tourette’s, he shrugged offhandedly and said, “Of course – like you,” and left it that.

Some time later a GP gave a similar, off-hand response. Sort of, “isn’t it obvious?” Well, no, it wasn’t obvious. Most people think that because none of us could possibly have something “as serious” as Tourette’s since, so far, we haven’t gone around blurting out profanities (echolalia is the official word for that). That, however, is an extreme symptom of an otherwise fairly benign condition.

In short: we think we have Tourette’s Syndrome because we do. It’s that simple.

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