Tourette’s and Coping with COVID-19

Tourette’s Mothers Exchange Experience of Coping with COVID-19

The awareness month for Tourette’s Syndrome runs from May 15th – June 15th. Like many other patient groups, the Tourette’s Association of America, has created a range of webinars to support their community during the pandemic. 

My tics are now off the chain”

One of the most powerful webinars in the series is two Mums talking together about their experience of looking after their children who have Tourette’s Syndrome. One of the women has the syndrome too, and speaks passionately, and with humour about living with Tourette’s and commonly co-morbid conditions during the lockdown:

“While my OCD is absolutely thrilled with the amount of handwashing that we now have to do, my tics are now off the chain. They’re also changing…And what happens when we have stress and pressure? We have more tics. Tourette’s comes knocking on the door along with their best friends OCD, ADHD, impulsivity, anxiety, unexplainable anger that can’t be controlled…And that’s just me as an adult.” – Kate Mielitz

Parenting during COVID-19

During the webinar, the two participants exchange stories, strategies and experience about parenting children with Tourette’s Syndrome and tics during the lockdown. It ends with a heartfelt statement about keeping perspective in this challenging time:

“Your children are not doing this to get your goat. It’s OK to be frustrated. It’s OK to be driven absolutely insane by the tics, the ADHD, the anxiety, the depression, the OCD. It’s OK to be upset. It’s just about processing it, and figuring out the best way to work with it within your family.” – Kate Mielitz

Making cough tic stigma

For those whose tics involve coughing, sneezing or sniffling, Kate acknowledges the challenge: “The more you know that you can’t do it, the more it’s going to happen.” The Association acknowledges this as a “unique concern” for the Tourette community. The team produced a section on dealing with other people when coughing or sneezing in public. It’s backed up by written support and downloadable cards which explain during the pandemic why they are coughing:

“I have Tourette’s Syndrome or a Tic Disorder – a medical condition.  It causes me to cough, sniffle or clear my throat, even though I am not sick.” – Tourette’s Association of America.

NEXT STEPS:

See the growing range of COVID-19 webinars from the association at… 

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View Kate in conversation about parenting at this time at…

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Visit our sister blog, and twitter #PAGC19, which brings together examples of how patient groups are supporting their patients during the pandemic at…

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