Tourettes & Tic disorders
I read an article from the British Medical Journal titled "COVID-19 related increase in childhood tics and tic-like attacks" a week or so and was struck, in particular, with the section relating to the use of social media. It states;
"There is some concern that social media and websites such as TikTok that promote the sharing of videos of influencers with symptoms may have a part to play"
"They report that they gain peer support, recognition and a sense of belonging from this exposure. This attention and support may be inadvertently reinforcing and maintaining symptoms. The role of social media needs further exploration, particularly the potential for ‘contagion’ and the maladaptive gains that might unintentionally arise from this peer identification."
So I will start with the beginning. I have Tourette's Syndrome and tic in embarrassment, on my own for about a year before I sought help from my GP and then later a referral from a neurologist. Still not believing that neurologist, I went for a second opinion.
"What do you think you have?" the Doctor asked.
" Maybe, the Jumping Frenchmen of Maine disorder?" I quipped.
" No you have Tourettes," and then the conversation moved on to medication, habit reversal therapy. None of that helped, especially since I've not seen a Habit Reversal Therapist and after being on a waiting list for seven or so years, I am inclined to think that the waiting list is imaginary. I had hidden my Tourette's for a long time and this had an effect on my self-esteem, my confidence and anxiety. I felt stupid, how an earth could I not control the things that came out of my mouth and the things that my hands or legs would do? I didn't want to the be the person that I felt the tics represented; something out of control and inane.
The only thing that has really helped having Tourettes was the understanding that I didn't have to hide it. I didn't have to hide my tics and I think this is what I found frustrating by the above claim from the BMJ article. It seems to be reiterating notions of shame - that those that have the audacity to show their tics to over re potentially harming others. I think we need to think more about why is that so many children with tic disorders feel like they don't belong, feel shame for their tics and feel the need to supress and hide it.
Anyway, that is my moan. Now for the practical stuff.
Thank you to Amanda Lecomber on behalf of Neurodiversity Hub for inviting me to talk about Tourettes and my journey of diagnosis. It was amazing to see pediatricians, teachers, SENCO, parents and people with Tourette's syndrome in the audience. I hope I was visible and continue to be visible to the wider community.