Studying and making connections online with Tourette’s syndrome

Beth explains how her tics have increased in volume and frequency during the pandemic. She’s found it useful to mention her tics at the start of online tutorials. Activities like reading and taking photos help, and she enjoys studying and chatting with other students in a virtual space organised by her SU.

Beth talks about her experience of Tourette's syndrome and how it has affected her studies during the pandemic.

This video contains audible tics.

Video transcript

This video contains audible tics, transcribed as [tic]

Hi, I’m Beth and I started studying at the Open University part time this academic year [tic]. I am studying sport, fitness and coaching [tic] because I am interested in sport, particularly swimming and synchronised swimming [tic]. I have Tourette Syndrome and I am also autistic [tic]. I have had tics all of my life, but they became more obvious when I was around 16 [tic]. Tics are involuntary sounds, movements or phrases.

Since the start of the pandemic my tics have increased in volume and frequency [tic]. They've also changed drastically [tic]. I also think the tics are in a waxing period, which does not help. This is because coronavirus has caused me to worry more, about the spread of the virus and what it could potentially mean for me and my family including if someone got sick with covid [tic].

I tend to worry about everything, so worrying about this virus is no different. I just find the worries harder to rationalize [tic]. I take all the precautions I can to help ease the anxiety such as wearing a mask and keeping my distance from others [tic]. I've also stopped watching the news as this has added to my anxiety [tic]. Having Tourette Syndrome in the pandemic has caused some [tic] challenges for me during my degree.

First of these is online tutorials. It's quite nerve wracking to be in these tutorials, mainly because I'm worried about how people react to my tics and if they'll be understanding and considerate about it. To combat my worries, I have started to mention my Tourettes at the start of a tutorial in the chat function [tic]. Then I can later choose to progress onto the microphone when and if needed.

I've also found that studying makes my tics better. Whilst I'm physically doing studying they're not as severe [tic]. But I've noted that sometimes the stress of [tic] thinking about studies and assignments can make it worse [tic].

One of the main things I've learned to do and am still learning to do is to be patient with myself, give myself time to tic and to be stressed [tic]. I also try doing a positive activity that I enjoy such as [tic] reading a book or taking a walk or any form of exercise [tic]. I also take photos to relax, generally of flowers. Sometimes I find it helpful to slowly squeeze all my muscles and gently relax them [tic] one by one, head to toe [tic].

I've also found the lack of human interaction with other students difficult [tic]. One of the things my student union has done is set up a place where young students can chat and study together, albeit different subjects [tic]. But the company's still nice and this has been really helpful [tic]. All the young students have been really welcoming and accepting towards me and some even have tics like me [tic]. I'd recommend seeing if there's something similar at your university [tic].

At the end of my degree, I want to make sport more inclusive for those with SEND (Special Educational Needs and Disability). I hope my tips have helped, and remember, there are organizations that can offer support. In my case, the Society for Neurodiversity, as well as Tourettes Support groups, such as TIC Hull have been really useful. Sometimes just knowing other people have been experiencing the same struggles has been reassuring [tic]. It's always important to remember you're not alone.