Tourette Syndrome Awareness Week
From balancing university studies to moving out of home, life in your early twenties is tough enough, but imagine having to spend the majority of your day explaining to complete strangers just why you are acting a particular way.
Monday 4th May to Sunday 10th May is Tourette Syndrome Awareness Week. We spoke with Hayley, a 21 year old university student, to highlight what life is like when you have Tourette Syndrome (TS). Hayley talked to us about some of the common misconceptions surrounding TS and the support she gets from friends, family and support groups.
Hayley was diagnosed with Tourette’s in her final year of high school whilst completing her HSC. A stressful time for any soon to be graduate, made even more stressful by her diagnosis.
‘’They started as small movements kicking things and squawking like a parrot, each week the tics got worse, I became more physical, hitting things and sometimes ended up hurting myself and others near me. People kept telling me I was under too much stress because of the pressures of the HSC, some said I shouldn’t go ahead as it was too much for me’’
Haley’s passion for primary school teaching was what kept her going through her HSC year and is what has motivated her to complete her of Masters of Teaching.
When asked about how she copes with daily life, Haley spoke about the importance of caring family and friends who know exactly how to support her when she is experiencing intense tics. With a keen interest in public speaking, Hayley is part of the debating team at her university. She admitted she was initially nervous about joining, but has found the group to be welcoming and very understanding.
‘’They take the time to understand me and know how to support me through big situations. Once during a debate, I ended up having to go outside and experienced what looked like a seizure, they all came out and stood around me in a circle and pretended to be chanting as if they were in a cult or something, they know I love humor and seeing them being so weird in public helped me.”
Hayley is also passionate about educating people about TS and how it impacts people in different ways.
‘’Severity isn’t determined by swearing. I find that eye tics are just as frustrating. Severity is about impact (on yourself). Tourette’s is experienced so differently for everyone that for some people its disabling and effects there every day, for others they have mild tics that others won’t notice so they are less impacted. ‘’
Having recently connected with Tourette Syndrome Association of Australia (TSAA), Hayley has found TSAA to be a fantastic source of information and support for people with Tourette’s and their families.
‘’I was at a zombie walk event in Sydney where I found the TSAA stall and now I am a support group leader with TSAA. We were lucky enough to have our first meeting the week before we were asked to stay home due to Covid. We met in a park and played Frisbee, it’s a fun way to keep social distancing. People of all ages are in the support group. I find it helps parents with young children learn just what’s possible for their child, sure it’s going to be hard but sharing our experiences can make all the difference”
“I have also attended the TSAA annual camps and have met some good friends and it’s so helpful to be in an environment where you are not talking about Tourette’s. You can get away with just being yourself, screaming, yelling profanity, walking around without wearing a hat”
Tourette Syndrome Association of Australia (TSAA) have been supporting individuals and families for over 30 years. This year’s awareness campaign is focused on getting through the global crisis that is Covid-19. Their website has numerous publications on getting through the pandemic. TSAA also have an established Facebook forum that aims to help break down the isolation many families and individuals with Tourette’s feel. The closed group provides an opportunity to share experiences and advice in a safe space.
To find out more about Tourette’s and support that is available visit the Tourette Syndrome Association of Australia website.
Project Officer Better Access Map