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What Is It Like to Have Tourette Syndrome During a Pandemic? 

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Tourette syndrome (TS) is a complex neurological condition. The key features of which are tics, involuntary and uncontrollable sounds and movements. The early symptoms of TS are typically noticed first in childhood, and a large number of people with the condition will also experience co-occurring features and conditions.

The biggest misconception around TS is that everybody with the condition swears. Coprolalia is the clinical term for tics that produce socially unacceptable words, and only approximately 15–20% of people with TS have this symptom. 

One factor which many people might not be aware of is that TS and tics are highly suggestible and often related to anxiety – this means someone with TS might find during the COVID-19 crisis that their TS symptoms intensify, as well as any co-occurring conditions including ADHD, OCD, anxiety, and depression.

People with tics might experience suggestible tics, such as coughing, sniffing and sneezing tics this is particularly the case in high-stress situations, like travelling and in crowded places. Much of the stigma that surrounds TS comes from misunderstanding. Support associations have produced cards for when people with tics need to make those essential trips in public and may have to explain symptoms to others (Tourettes Action and Tourette Association of America).

How to explain what this must be like for patients with TS is a challenge. As most of us emerge from, or have the end of lockdown in sight, think of those other neurodiverse populations, such as people with TS (already a stigmatised group) who not only face uncertainty and perhaps increased stigma due to the pandemic we are living through.

I’ve attempted this using a poem by the late and great Spike Milligan, which I hope in some way might express the difficulties of having TS in the current climate. 

Tourettes is not infectious. You can’t catch it like the flu.
When someone coughed near me today, I started coughing too.
I passed around the corner and someone heard my cough.
He tutted and I realised but he already had backed off.
I thought about that cough, then I realised what it cost.
My tics –  a cough, or sniff, or sneeze, won’t travel round the earth.
Please realise my tics are not from COVID.
Don’t make me feel rejected.
Instead have some understanding that with tics. You cannot get infected! 

This writing has been adapted from the poem  Smiling Is Infectious by the late and great Spike Milligan.

Dr Seonaid Anderson is a chartered psychologist and freelance neurodiversity consultant. She tweets  @Seonaidanderso2

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