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January 30, 2023 2:53 AM

I’ve spent much of my adult life doing what I loved as a child: asking questions in the hope of finding some sort of resolution. Despite being someone who obsessed over the smallest questions and problems in the world around me, I long resisted turning those skills inward. As a result, I never knew the source of my tics, never knew that I had been living with Tourette’s syndrome. from How a Tourette’s Diagnosis Helped Me Understand Who I Am by Leyland Cecco
posted by chavenet (4 comments total)

This is a great article; thank you for posting it. So many kids with tics get labeled as "acting out" (especially the more visible tics). I see a fair number of folks in their twenties and thirties who, like this author, never got a diagnosis in childhood for any number of reasons. It's tough because the therapy thought to be most effective for bothersome tics -- habit reversal training, alluded to in the article -- is only covered by insurance for kids/adolescents. So for adults we're limited to not-great medications that have a slew of side effects.

It increasingly felt as though, while there was no loss of self, the condition was able to braid itself into the mind, like a vine twisting around a tree until the two become inseparable.

What a sentence!
posted by basalganglia at 4:25 AM on January 30, 2023 [2 favorites]

About 3 years ago, our landlord's criminal negligence led to a house fire that nearly killed my daughter and me. My wife and I spent the night in shock/insomnia and then said fuck it, we're finding a new place to live the next day. An old friend of ours is a big-name realtor, so she lined us up with interviews at a couple of different apartment complexes. The one we liked, the woman who shows people around and leases flats (there are like 250 in our complex) gave us a tour, and then walked us through the signing—my wife's driver's license having melted in the fire threw a wrench into the whole thing, so it took hours.

The whole time, every minute or so, this otherwise lovely and professional woman would suddenly jerk her head around and/or make a weird noise. We were so traumatized and sleep-deprived that we kept just being middle-class white people and simply pretending it wasn't happening, for so long that I started to forget it was happening at all. After a good night's sleep in a new place, we went out shopping for basic kitchen supplies, and halfway through, my wife suddenly bursts out with "hang on, was I hallucinating or was that Marla woman constantly doing something weird?" We spent like ten minutes trying to sort out whether she was just fucking with us for some reason, but she seemed too nice and professional.

Later on, I had to interact with her a bunch, and she said she was really tired, and the tics and weird noises were way more common/intrusive, and I must have raised an eyebrow, because she went on and explained Tourette's to me. I very quickly got used to it, so much so that when we recommended the complex to another couple looking for a flat, I totally forgot to mention the Tourettes. Our friends were like "uh, what's up with that woman?" and I honestly didn't know what they meant at first. You can get used to darn near anything. Marla's great at her job, real easy to work with, real friendly.
posted by outgrown_hobnail at 6:03 AM on January 30, 2023 [11 favorites]

I have mild Tourette's and I've begun having some echolalia and glossolalia in my 30s in addition to tics.

My ex boyfriend has it much worse and in his early 20s began to outburst whole words and phrases including curse words and slurs, and often a repetitive non sequitur. It took his parents and family so long to understand that these symptoms are not a direct representation of his thoughts or mind, that I was embarrassed for them. YEARS later his mother finally had a lightbulb moment and said, "You're not really angry or thinking about (tic word) a hundred times a day!" Yeah, just like he was telling you.
posted by panhopticon at 6:34 AM on January 30, 2023 [5 favorites]

I had tics as a kid, but they went away after a few years and seemed to be gone by the time I reached Jr. high.

However, the one time I tried cocaine as an adult I developed a severe tic of jerking my head to the right every fifteen or twenty seconds, and it lasted for more than an hour — a truly awful experience I have no desire to repeat under any circumstances.

But which suggests some underlying issue is still there, swathed in layers of inhibition.

It's interesting that Tourette’s is associated with high rates of left-handedness/ambidexterity, and I think it’s especially interesting that in the movement disorders associated with anti-NMDAR encephalitis tics are not observed, because I’ve wondered whether tics might not be almost universal, but in people with Tourette's, the immune system fails to edit them out.
posted by jamjam at 11:23 AM on January 30, 2023 [2 favorites]