Masters research helped increase my understanding of TS stigma and how things need to change

Posted Mon 17th Jun 2024 at 09:55
by Jennifer Lomax

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When deciding what to research for my master’s dissertation I knew I wanted to do it about Tourette Syndrome (TS). It has been a subject I’ve done a lot of personal research on over the years in the hopes I could help a family member.  

In my personal research and experience, I discovered a chasm between what I thought TS was and what it actually is. I had huge misconceptions about TS and began to see that most people I know also believed the misconceptions. It became important to me to try and understand the nuances of the misconception and stigma that abound in this condition. I also felt it important to use the experience of those living with TS. 

The blogs from the Tourettes Action website were a great source to use as data. They were honest accounts of lived experience and analysing them expanded my view of how entrenched stigma is in the lives of those with TS, how many different ways they experience stigma, and how necessary it was for things to change.  

What was most interesting and beneficial to me was that delving into the bloggers experience enabled me to identify stigma within our family, even in myself. Increasing our understanding of stigma has changed the way we view and interact with our loved one and even the way we use humour (which we realised could be construed as mocking and so changed it to more supportive humour). Our family has become a safer environment because of this. 

My research illustrated that stigma doesn’t just occur in obvious ways such as being bullied or being ridiculed, more often it happens in more subtle ways like drawing attention to the tics with stares, comments, questions; not being believed or understood, and internalising those stigmatising thoughts and feeling embarrassed or ashamed. The various forms of stigma were found in all areas of life which created barriers socially, with schooling and employment and accessing necessary support and help. It became apparent that changes were crucial! Better representation and better understanding of TS is vital for all, but especially those who care for, support and help those with TS.  

One particular finding that interested me was that some bloggers mentioned easing their tics by doing things they were passionate about was relieving, and led to feelings of belonging. This was a big contrast to the way many of the bloggers described suppression of tics, as painful and exhausting. I could not find much research to support this finding, but it is a topic I am very keen to explore in the future!  

I very much enjoyed the whole process of this investigation. I loved learning more and increasing my own understanding of life with TS. It was enlightening to see how much research is still needed to increase understanding of how to improve the quality of life for those with TS, however research is expanding and hopefully this will lead to necessary interventions to improve the effects of stigma and enable better access to needed help and support.

You can read Jennifer's Summary Report of her dissertation here

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