“Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome

Malli, Melina Aikaterini, Forrester-Jones, Rachel and Triantafyllopoulou, Paraskevi (2019) “Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome. Journal of Developmental and Physical Disabilities, 31. pp. 819-845. ISSN 1056-263X

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Abstract

Research suggests that adults with Tourette’s syndrome (TS) may face unique challenges in their everyday life due to their condition. To date, however, only a limited number of studies exist in relation to their life experiences and conception of identity. This study, which we believe to be the first of its kind, aimed to expand the literature by ‘giving voice’ to this population, and to evaluate the social and personal cost of living with TS during adulthood. Semi-structured interviews were conducted with sixteen adults with Tourette’s that focused on how they negotiated their identity and experiences. Transcripts of recorded interviews were subjected to interpretative phenomenological analysis. Three superordinate themes emerged: a) “Incorporating Tourette’s syndrome into self” revealed two divergent ways in which TS was merged into the participants’ self-identity, either by reconciling with it or fighting against it; b) “Interpersonal interaction” covered issues relating to negative and supportive ties as a result of their condition; and finally, c) “The solitude of Tourette’s syndrome” described the loneliness that stems from the condition. The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdraw, and self-stigma. Implications for clinical practice on the topic are discussed.