Regular guest contributor Serena is here with important insights into her experiences of life seven months into the global pandemic.
As I sit at my dining-room table writing this post, the impending misery of a potential second lockdown swirls around in my head. It’s nearing the end of September, and although the last lockdown began to lift over the Summer I only began venturing out of my house in a slow return to society in the last month or so.
I caught the last week of the Eat Out to Help Out hype, experienced life outside my neighbourhood, and despite being a lifelong avowed extrovert, found myself overwhelmed by the sudden return to socialising.
This is by no means normality, however. A lot has changed since March, when the severity of the COVID-19 situation became apparent and the first lockdown began. As a person with Tourettes, I would say that I’ve experienced these changes differently from my non-disabled friends. Yes, just like them I miss birthday parties, family get-togethers and holidays without the threat of a two-week quarantine on return. But some of the less obvious parts of everyday life in 2020 have had a vastly different impact in comparison.
For example, as a 20-something in London with lots of 20-something London friends, most of my circle are used to relying on public transport to get around. During the peak of lockdown this was unnecessary for many of them as they returned to their family homes outside London – but as commercial life picked up again, some of them have resumed jobs and leisure activities and started to travel around the city once more. For me, however, I’ve stayed away from the Tube. A lifetime of living with Tourettes has taught me that if I’m faced with a situation to which there’s an inappropriate response, my brain and tics will egg me on to make it. In order to avoid those sudden urges to rub my face on the Tube poles like a cat looking for attention, to put my fingers in my mouth, to cough loudly and obviously, it looks as if I won’t be setting foot on public transport for a while.
I’ve also found it particularly anxiety-inducing not being able to see my friends. This isn’t exactly unusual, but I do think that the intersection between anxiety and Tourettes can culminate in the particularly nasty symptom of intrusive thoughts. Before lockdown I was somewhat of a social butterfly, usually at one house party a week (if not more), but now many of my friends are spread around the UK and, of course, social activities involving more than six people are banned. Despite there being a perfectly logical reason for my reduced socialising (a literal pandemic), my brain continues to react in the way it would have before COVID-19 – namely, telling me that the reason I’m not seeing people is because they don’t like me.
But thankfully not all the changes are negative. The few restaurants I’ve visited since they reopened have provided some of the most pleasant dining experiences of my life. In my pre-COVID-19 reality, restaurant seating was a big source of stress. I have tics which mean I touch other people’s food and plates, and stretch out my hands, and when you add the occasional noticeable vocal tic, restaurants can be a triggering and anxiety-inducing environment. Restaurants will often cram as many seats as fire safety regulations will allow into their spaces. This means they aren’t very accessible for me, as I hate being crammed in at a table with less than a meter between me and the other tables. So suddenly finding myself in a world where there is a REQUIRED two meters between tables has been really nice. As well as this, the fact that there are fewer people around now too has been good – fewer eyes on me when I’m trying to tic in peace.
I fully expect that in the upcoming weeks we’ll witness the beginning of a second UK lockdown, so I’m not sure how long these thoughts I’m having will be a reflection of our reality. But having talked to other neurodivergent people, I know I’m not alone in struggling with the challenge of managing in this changing world.
Serena’s piece highlights some specific issues experienced at this time by people with tics. Coughing and face-touching are very common, as are oppositional tics that involve saying or doing the worst thing in any given situation. Things that used not to be considered socially unacceptable have changed during the pandemic and are now taboo. This is very likely to create new challenges and barriers for those with Tourettes. These could be easily misinterpreted by both strangers and our friends and families. I hope Serena’s honest, thoughtful piece helps increase understanding of these issues.