So we’re in 2021 and the New Year is often a time to reflect on the changes we’re going to make in the year ahead. Eleven years ago it was the New Year that prompted me to start writing this blog, and it will be ten years ago this year that I started being open and honest about the episodes of intense tics I was experiencing.
I didn’t have much choice about this honesty as my tics went from just occasional to happening several times a day. Back then I didn’t have any language to describe them and to start with I called them ‘the dying fish move’ as they often involved me flapping about on the floor like a fish out of water.
Soon, though, I needed a way of talking about these episodes in professional contexts and ‘dying fish’ clearly wasn’t going to cut it. I started calling them ‘ticcing fits’ because they looked seizure-like and needed similar management, even though I’m clear that they’re really clusters of intense tics, not seizures.
In 2013 I wrote about a piece of research carried out by the Tourettes team at St George’s Hospital that concluded that episodes of intense tics were potentially a feature of Tourettes for more people than previously thought – they called these episodes ‘tic attacks’.
While I’m not a massive fan of ‘tic attack’ as a term I’ve also felt increasingly uncomfortable using ‘ticcing fits’. So, as the majority of the Tourettes community use ‘tic attack’, to avoid confusion I’ve decided to use this term from now on too.
‘Tic attack’ isn’t perfect and I’m aware that it can mean different things to different people. I’m worried that the word ‘attack’ might be misconstrued or associated with violence. I considered other possibilities including ‘cluster tics’, or ‘tic status’, which seems to have been in use from as early as 1996.
But in the end I feel that I do need to change my language and using the term that has become established feels right for now.
Language is important as it guides how we think and feel. As disabled people lots of the language we inherit is imperfect and heavily rooted in medical perspectives rather that in our lived experiences. I’m committed to continuing to reflect on and refine the language I use to describe my reality in as open a way as possible.
If you’re experiencing tic attacks, the following blog posts might be useful to you: