Tourette syndrome and self-stigma

Posted on 18 August 2026 by Pippa McClounan

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A summary of a research study supported by TA

Researchers at the University of Liverpool conducted a research project examining internalisation, social support, self-esteem, and quality of life, exploring how negative public stigma affects self-stigma in people living with Tourette syndrome.

Why was the study conducted?

People with Tourette syndrome may encounter misunderstanding, discrimination and negative stereotypes. These experiences can affect how people feel about themselves and may sometimes lead them to internalise negative attitudes about Tourette syndrome, known as self-stigma.

This study explored the relationships between experiences of stigma, self-stigma, self-esteem, social support and quality of life among adults with Tourette syndrome.

What did the study involve?

Adults aged 18 and over with a formal diagnosis of Tourette syndrome were invited to complete an anonymous online survey. Participants were recruited through Tourette’s Action, online support groups and the University of Liverpool. Ninety-one people began the study. After excluding incomplete responses and those that did not meet the eligibility criteria, data from 60 participants were included in the main analyses. Slightly fewer responses were available for some of the individual measures.

Participants completed questionnaires about:

• experiences of stigma and discrimination;
• the extent to which they had internalised negative beliefs about Tourette syndrome;
• self-esteem;
• perceived social support; and
• quality of life

What did the study find?

Greater reported stigma was associated with lower self-esteem. This suggests that negative attitudes and treatment from other people may be particularly relevant to how positively people with Tourette syndrome view themselves.

However, self-esteem did not explain the relationship between experiences of public stigma and internalised stigma. The study therefore did not find evidence for the proposed pathway in which experiencing stigma leads to lower self-esteem, which then leads to greater self-stigma.

Greater social support was associated with lower levels of internalised stigma. Although this relationship was relatively modest, it suggests that having people available to provide acceptance, reassurance and practical or emotional support may help protect against adopting negative beliefs about oneself.

Some other results were unexpected. Higher public-stigma scores were associated with lower internalised-stigma scores and higher quality-of-life scores, which was the opposite of what the researchers had predicted. These findings should not be interpreted as showing that stigma improves wellbeing. They may reflect differences in how participants interpreted the questions, the way the measures were scored, characteristics of this particular sample, or other factors that were not measured.

What are the limitations?

The study was relatively small, and the sample contained substantially more women than men, although Tourette syndrome is diagnosed more frequently in men. This means that the findings may not represent the experiences of the wider Tourette syndrome community.

The study also relied on questionnaires completed at one point in time. It can identify relationships between people’s experiences and wellbeing, but it cannot establish that one factor caused another. Some of the questionnaires also showed only moderate reliability in this sample, and the unexpected findings require replication before firm conclusions can be drawn.

Future research would benefit from larger and more diverse samples and from interviews or open-ended questions that allow people to describe their experiences in their own words.

What might the findings mean?

The most practically relevant findings were that experiences of stigma were associated with lower self-esteem, while greater social support was associated with lower self-stigma.

These findings reinforce the importance of:

• challenging inaccurate and stereotypical portrayals of Tourette syndrome;
• improving public and professional understanding of the condition;
• providing accessible peer and community support;
• addressing the psychological and social effects of Tourette syndrome, rather than focusing solely on tic management; and
• developing and evaluating interventions that promote self-acceptance and self-esteem.

Online communities and support organisations may be particularly valuable by enabling people with Tourette syndrome to share experiences, obtain information and connect with others who understand the condition.

Thank you

The researchers would like to thank Tourettes Action for supporting recruitment and everyone who gave their time to participate. Their contributions have helped to improve understanding of stigma, self-esteem and social support among adults living with Tourette syndrome.

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