Objective The aim of this research was to find out the experiences of those with Tourette syndrome (TS), specifically what having a diagnosis means and whether it this is useful for patients with TS.
Method Nine adult participants with TS were recruited through a Tourette syndrome charity. Semi-structured interviews were completed either face to face or via telephone and the resulting transcripts were analysed using thematic analysis.
Results There were three main themes resulting from the data: Diagnosis helps with coping, Dissatisfaction with the diagnostic process and Feelings about TS and Diagnosis. Participants felt that diagnosis was useful for self-understanding, accessing support and having an explanation for the behaviour, but expressed disappointment with many stages of the diagnosis. Most felt that clinicians lacked proper knowledge of TS and that there was minimal support after diagnosis. Many had experienced stigma as a result of their TS, and felt that TS was misunderstood and misrepresented by the media. Participants felt that TS played a role in their character or identity.
Conclusion The findings suggest that a diagnosis of TS is useful for those with the disorder but indicate a gap in services for those with TS post diagnosis. Results indicate that increased knowledge of TS for clinicians and improved support post-diagnosis will be useful in continuing to help those with TS to cope with the disorder.