Me, My Tics and I: An Exploration of Self-Identity and its Implications for Psychological Wellbeing in Young Women with Tourette’s Syndrome

Abstract

Women with Tourette’s syndrome (TS) continue to be under-researched, despite female sex being associated with increased tic-related impairment in adulthood. Existing literature indicates that individuals with TS are more likely than the general population to report self-stigma, but little is known about the subjective identities of women with TS and how this relates to psychological wellbeing. Semi-structured interviews were conducted via Zoom with a purposive sample of 11 females. All were diagnosed with TS and aged 18–28. Data was transcribed verbatim and thematic analysis applied. Five themes were established: “I’m not normal”, “I just want to be me”, I’m a “people pleaser”, seeing oneself as an “outsider”, and “it's just part of me…it's not going anywhere”. Difficulties with self-acceptance and the autonomy to be one’s true self were noted and appeared to be intensified by stereotypical gender roles and attempts to conceal tics. Findings also suggested that personal growth and feelings of mastery can be achieved through embracing TS as part of one’s identity, or recognising it as just one aspect of the self. Psychological support focused on accepting and living with tics rather than reducing them may benefit this population and is currently difficult to access. Consideration should also be given to improving the availability of support groups where women with TS can meet others like themselves.

Supplementary Information

The online version contains supplementary material available at 10.1007/s10882-023-09911-x.

Tourette's syndrome (TS) is a neuropsychiatric disorder characterised by chronic motor and vocal tics which wax and wane over time (Robertson, 2000). To be diagnosed with TS, two or more motor tics and at least one vocal tic must be present, with onset before age 18 and duration of at least one year (American Psychiatric Association, 2013). There are more than 300,000 people with TS in the UK alone (Tourette's Action, 2021) with average age of onset being 7 years old (Lewin et al., 2012). Though there is currently no cure, approximately one-half to two-thirds of affected individuals experience a considerable reduction in or complete remission of tics by early adulthood (Bloch et al., 2006). Consequently, existing literature around TS overwhelmingly focuses on children and adolescents and fails to consider how the impact of TS may differ in adulthood (Kompoliti, 2015). This is problematic given that many of those diagnosed with TS in childhood continue to have tic-related difficulties in adulthood (Bloch et al., 2006).

Evidence relating to women with TS is further limited. This may be a consequence of males being affected at a rate 3–4 times higher than females (Teive et al., 2001). However, this discrepancy is reversed when considering only adults. Females are disproportionately affected by motor tics becoming more severe and widely distributed in adulthood (Lichter & Finnegan, 2015). Furthermore, female sex is associated with tic-related impairment worsening in adulthood, while for males it is likely to improve (Lichter & Finnegan, 2015).

Approximately 90% of those with TS have co-occurring conditions, most notably attention-deficit hyperactivity disorder (ADHD) and obsessive–compulsive disorder (OCD), but also extending to autism spectrum disorder and low self-esteem (Eapen et al., 2016). Anxiety and depression are also common (Evans et al., 2016), with a prevalence of approximately 30% amongst those with TS (Hirschtritt et al., 2015). The majority of research that has included adults with TS has focused on tic management and reduction. As a result, available support is also geared towards this, with general psychological wellbeing in the context of tics receiving less recognition.

Research which has considered the experience of living with TS more broadly is, again, centred around children and adolescents (Malli et al., 2016). This has identified that young people with TS have reduced emotional wellbeing and often struggle to ‘fit in’ (Cutler et al., 2009). Loneliness, bullying and self-stigma have also been noted (Malli et al., 2016; Storch et al., 2007). While stigma refers to a person being denied full social acceptance (Goffman, 1963), self-stigma occurs when a person internalises negative public attitudes (Corrigan & Rao, 2012). Hanks et al. (2016) found that children with chronic tic disorders had more negative views of themselves. Less is known about the experiences of adults, though quantitative literature points toward significant difficulties with self-identity and social anxiety (Kompoliti, 2015). A review of qualitative literature found difficulties with self-identity were present among children and adults with tic disorders (Smith et al., 2015).

Self-identity can be defined as ‘the perception or recognition of one's characteristics as a particular individual, especially in relation to social context’ (Lexico, 2021). Erikson was among the first to hypothesise how identity is formed with his theory of psychosocial development (1959). He emphasised the continual evolution of identity throughout life, setting out eight consecutive psychosocial stages with a ‘conflict’ occurring at each. Conflicts must be resolved if the individual is to proceed to the next stage. Conflict resolution is associated with development of virtues, while failure results in a damaged sense of self. Though the stages of this theory span from infancy to old age, the majority occur before adulthood. Arnett (2015) takes an alternative view, focusing instead on the period between 18 and 29 years and labelling this ‘emerging adulthood’.

According to Arnett, this time is marked by the exploration of one’s identity. Significant life events such as moving out, establishing a career, getting married and having children may occur (Shirai et al., 2012). Setting and striving towards such goals during this time helps in establishing identity (Nurmi, 2004). Emerging adulthood is understood to be an influential time in identity development across racial, cultural, and socioeconomic groups (Trible, 2015), and uncertainty about how to define oneself during this period is associated with poorer psychosocial wellbeing (Baggio et al., 2017). This provides a good rationale to consider women in this age range in particular.

Evidence around TS and identity has typically concentrated on the attitudes of peers, as opposed to exploring the views that those with TS might hold of themselves (Ben-Ezra et al., 2017; Friedrich et al., 1996; Woods & Marcks, 2005). However, one recent qualitative paper by Malli et al. (2019) explored the lived experiences and identity of adults with TS. The authors describe this study as ‘the first of its kind’, indicating the scarcity of research in this area. They concluded that participants did not generally view TS as a prominent feature of their identity, but some minimised its influence through acceptance while others resisted incorporating TS into their identity.

The limited research into women with tic disorders indicates that they are significantly more likely to face functional impairment across multiple life domains and report comorbid mental health conditions than their male counterparts (Lewin et al., 2012). These co-occurring difficulties often have a more considerable impact on quality of life than tics themselves (Freeman et al., 2000). Furthermore, while individuals with TS report lower self-esteem than healthy controls, this is more pronounced in females (Hesapçıoğlu et al., 2014).

Negative self-identity is associated with vulnerability to other mental health issues including low self-esteem, depression and anxiety (Yanos et al., 2010). This provides clear justification for exploring the attitudes that women with TS hold towards themselves. Understanding more about this may mean professionals are better able to intervene in ways which go beyond tic management to help improve the psychological wellbeing of this population.

Aim

To explore self-identity in young women with TS and the implications of this for psychological wellbeing.

Research Question: How do young women with TS experience their identity and what implications might this have for psychological wellbeing?

Methodology

Ethical Considerations

This study was approved by a university research ethics committee. A participant information sheet outlined all aspects of the research and stated that participation was voluntary. Details of relevant support agencies were also included given that self-identify may be a sensitive topic. Upon interview completion, participants were reminded of their right to withdraw data within two weeks and were asked if they would like to be informed of the findings.

Design

A qualitative methodology was employed, incorporating semi-structured interviews and reflexive thematic analysis (Braun & Clarke, 2019). Qualitative research focuses on ‘understanding the meaning people have constructed, that is, how people make sense of their world and experiences’ (Merriam, 2009, p. 13).

Recruitment

A sample size of 10–20 is recommended for doctoral projects which use thematic analysis (Braun & Clarke, 2013). Eleven participants were interviewed. Recruitment was subsequently concluded as no further potential participants expressed interest within the required timeframe. While quantitative methodology seeks to establish breadth of topic, qualitative research is more concerned with depth (Guest et al., 2013), and a smaller sample allows for more in-depth inquiry (Crouch & McKenzie, 2006).

Inclusion criteria were:

• Age 18–29.

• Female.

• Diagnosis of TS.

• Capacity to consent to participation.

• Ability to understand and speak English. As this was a non-funded student project, translation resources were unavailable.

• Ability to participate in a semi-structured interview.

Exclusion criteria included:

• Current high levels of emotional distress. It was felt that this could increase the likelihood of an individual finding the interview topic distressing.

Purposive sampling was used. This involved the researcher posting an advertisement on social media platforms Facebook, Twitter and Instagram, where it was subsequently shared by others. The advertisement was also posted in TS support groups on Facebook with approval from administrators. Tourette’s Action, a UK-based non-profit organisation for those with tic disorders, also circulated the advertisement via their website and social media pages. These methods were free, accessible and meant the advert would be seen by individuals with TS.

A participant information sheet and consent form were emailed to those who expressed interest in this study. All participants emailed signed constent forms to the researcher, who returned countersigned copies. A convenient time for interview was then agreed with each participant. One individual enquired about participating via an instant messenger platform. Ethical approval could not be obtained to support this as it would not be possible to adequately monitor participant distress during interview. The individual was asked why this was their preferred format but no response was obtained.

Participants

Participants had a mean age of 22 and most had attended or were attending higher education. Six were UK-based, with others from USA, Canada, New Zealand and Philippines. Nine reported co-occurring conditions, most commonly anxiety (n = 7) and depression (n = 5). Further demographics are located in Table 1 below. Ten other eligible people expressed an interest in the study but did not proceed with participation for reasons unknown.

Table 1.

Sample demographics

				Co-occurring Psychological or Neurological Conditions
Pseudonym	Age	Location	Age TS Diagnosis Received	Depression	Anxiety	OCD	ADHD	Other
‘Amy’	18	USA	4
‘Bella’	22	USA	11					Bi-polar disorder, previous stress-inducded psychosis
‘Caroline’	26	UK	7
‘Danielle’	24	New Zealand	Unknown					Autism
‘Eve’	19	Canada	19					Sensory and auditory processing difficulties
‘Farah’	20	Philippines	18
‘Georgia’	19	UK	12	x	x	x		Dyslexia, sensory difficulties, short-term memory difficulties
‘Harriet’	20	UK	17		x			Autism
‘Izzy’	26	UK	18	x	x		x
‘Jess’	28	UK	28			x
‘Kate’	21	UK	16	x	x	x		Low processing speed

Data Collection

Semi-structured interviews were carried out with each participant. The appeal of this method is that while an interview schedule is used; deviation from it is permitted, allowing the interviewer to probe participant responses and explore unanticipated lines of enquiry (Rubin & Rubin, 2005). This is particularly useful when studying under-researched groups such as women with TS.

Literature suggests that some people with tics prefer interviews which are not carried out in person as they are less intrusive (Malli et al., 2019). Participants were therefore given the choice of Zoom or telephone formats. This also allowed the researcher to recruit internationally. The COVID-19 pandemic began during the course of this study, further supporting the need for remote interviewing. All participants opted for Zoom, and the majority elected to use webcams. Three connected with audio only. Inclusion criteria were confirmed before commencing all interviews and consent was revisited. This involved recapping the study’s aims and checking that participants were comfortable to proceed and for audio recording to begin. Interviews lasted between 50 and 82 min. They were transcribed verbatim. An application called Otter was used to assist with this, but inaccuracies meant that most of the transcription was completed manually by the researcher. Recordings were destroyed immediately after transcription.

Measures

The researcher developed an interview schedule in consultation with an academic supervisor. This was informed by interview questions used in previous research exploring the concept of identity (Laurenceau-Medina, 2014; Malli et al., 2019; Nunn, 2009). A 17-year-old female with TS expressed an interest in participation but did not meet age criteria. The researcher instead consulted with her via Zoom to obtain her view of the interview schedule. Some questions were added and others reworded as a result of her feedback.

The interview schedule consisted of key questions followed by prompts. This was used to guide interviews, though participants were reminded beforehand that they could steer discussion towards areas of personal significance. Additional demographic data including co-occurring conditions and age when diagnosed with TS was also collected during interview to contextualise the sample.

Data Analysis

To protect anonymity, the researcher assigned pseudonyms to participants and removed personally identifiable information from transcripts. They then applied reflexive thematic analysis to transcripts. This is a process of identifying, analysing and reporting patterns within data (Braun & Clarke, 2006). Reflexive thematic analysis requires the researcher’s ‘reflective and thoughtful engagement with their data and their reflexive and thoughtful engagement with the analytic process’ (Braun & Clarke, 2019, p. 14). Thematic analysis allows researchers to highlight both commonality and divergence in participant accounts (Braun & Clarke, 2006), which was appropriate given the exploratory nature of this study.

Braun and Clarke’s (2006) six steps of thematic analysis were followed. The first step involves familiarising with the data, which the researcher achieved by listening to interview recordings during transcription and later reading and re-reading transcripts. While doing so, sections of text which were of potential interest were highlighted and assigned codes which reflected their content (step 2). Due to the limited understanding of identity in this population, an inductive approach was used whereby coding was data-driven (Braun & Clarke, 2006). During step 3, the researcher looked across codes and used these to organise data into themes. Step four involved each theme being reviewed while step five consisted of naming themes, using participant language where possible. The final step was fulfilled by presenting the findings in written form.

Trustworthiness

Clear descriptions of the steps taken in data collection and analysis are provided. During interview, participants were invited to give examples to support their accounts and follow-up questions elicited further detail. Such strategies can improve trustworthiness (Korstjens & Moser, 2018). While establishing themes, efforts were made to stay close to what was said by participants. This helped to ensure credibility, described by Tobin and Begley (2004) as the ‘fit’ between a participant’s account and how the researcher represents this. Themes were also discussed in research supervision, and the provision of direct quotes to support conclusions improves transparency (Moravcsik, 2014).

Epistemology

Social constructionists argue that knowledge is not universal, but a product of social processes (Kostova, 2017). Both identity and gender may be considered social constructs, occurring as a consequence of societal beliefs and practices (Barron, 2002; Zack, 2017).

Social contructivism purports that learning arises as a result of interaction within an individual’s social context (Thomas et al., 2014). This felt relevant to the topic given that women’s roles are ‘strongly influenced by social context’ (Esteban-Gonzalo et al., 2020, p. 1370). The researcher therefore approached data analysis from this position; considering how the meaning women ascribe to their social interactions and the expectations placed upon them may inform how they see themselves.

Reflexivity

Without personal experience of tics, one takes an ‘outsider’ position (Barrett et al., 2020). A recognition that also being female may introduce assumptions about what it means to be a woman and how this informs self-identity is important. A reflexive research diary was kept throughout this study, allowing space to consider whether interpretations were data-driven, or occurring due to pre-conceived ideas. Though complete objectivity is impossible (Crotty, 1996), reflecting in this way can develop an awareness of bias which may then be bracketed to some extent.

Results

Five themes were identified, with subthemes being derived from each. These are depicted in the thematic map (Fig. 1). Each theme is described below, supported by interview extracts. Some words are omitted to reduce the length of quotations. Ellipses (…) indicate where this is the case.

Fig. 1.

Thematic map showing themes and subthemes

Theme 1: “I’m Not Normal”

All participants acknowledged that TS made them different somehow. This was generally experienced as a negative and conceptualised as being “abnormal” or “weird”. Two subthemes were identified: “there’s something wrong with me” and “it’s not appropriate for a girl to be doing that”.

Subtheme 1: “There’s Something Wrong with Me”

There was a sense from participants that their tics represented something inherently wrong with them. Several explained how stigmatising experiences had influenced this understanding of themselves. Referring to peers, Kate said “They always called me weird…and I went ‘well if everyone's saying it, it must be true’”. This highlights how stigmatising experiences can be internalised, resulting in self-stigma. Discussing her experiences of stigma, Danielle commented "It can make people feel really insecure…and really question, you know, ‘what’s so wrong with me that I’m stuck with this?’”, communicating a sense of reduced self-worth.

Farah spoke about noticing an increase in her tics during the COVID-19 pandemic, linking her inability to control these with adopting a negative view of herself. She explained “This pandemic made me realise that there’s really something wrong with me, that tics are really uncontrollable.” This connects a lack of mastery with impaired self-identity.

Jess described believing that her tics make others uncomfortable. When asked what this suggested about her, she replied “That I’m annoying and there's something wrong with me. And that I'm not normal and should try to be normal.” This conveyed a sense that not being ‘normal’ is somehow unacceptable.

Georgia spoke about negatively comparing herself to others, recalling one occasion where she experienced a leg tic while in a supermarket: “I imagined being behind me as another person, everybody’s walking normally and then there’s this weird person in the middle, flicking their legs around completely abnormally.” Other participants described a desire to “be like everyone else”.

For a few participants, being ‘different’ was not always experienced negatively. Amy viewed this as a selling point in some circumstances, stating “I got accepted into three different schools, and I definitely included TS in all three [applications], so I feel like that’s a cool thing to hear about when you’re looking for someone to go to your school.” This suggests a sense of valued individuality.

Subtheme 2: “It’s Not Appropriate for a Girl to be Doing That”

Several participants described how TS prevented them from fitting stereotypical gender roles, appearing to view themselves through the lens of how a woman ‘should’ be. Kate suggested that tics are considered “not ladylike”, while Eve stated “I have a few tics that are inappropriate words…there's this stereotype that girls are soft-spoken, very sweet. They don't always curse or that it's just not appropriate for a girl to be doing that.” Georgia reflected “There’re ideas around being female, that you need to be…the quieter person, more polite…and when you're shouting swear words, you’re punching things…it goes against that idea.” Most shared the belief that males would not be held to such standards.

It is noteworthy that Jess communicated an alternative viewpoint, believing that gender stereotypes benefited her in relation to her TS: “It would’ve been a lot more difficult if I was a man, because I think you have the potential to be seen as aggressive and scary…especially if you have swearing tics or inappropriate tics…I have the better end of the deal being a woman with Tourette’s, because people are more likely to feel sorry for you…and think that your tics are cute.” Though this offers a different perspective, gender stereotypes still appear to play a prominent role in making sense of who one is and what one represents in the context of tics.

Theme 2: “I Just Want to be Me”

A sense that TS made it difficult to ‘just be’ was apparent across all accounts. Three subthemes were derived: ‘feeling observed’, “I don’t trust my instincts” and ‘Tourette’s hides me’.

Subtheme 1: Feeling Observed

A feeling of being constantly subjected to external scrutiny was consistent across most interviews. Participants felt expected to ‘be’ a certain way and experienced excessive self-consciousness about not meeting these expectations. This made some reluctant to spend time in public places and several described being stared at. Amy explained “I don’t like walking alone in crowds because I just feel so judged…I feel so, like, ‘omg everyone hates me, everyone’s judging me.’” Jess described feeling “observed all the time” while growing up, and now avoided others when out in public. She explained “I don't want to make eye contact with them, I don't want to see their confusion…I'm assuming they're gonna think I'm on drugs or talking to myself because I'm mentally ill.”

Farah described feeling “embarrassed” about her TS and stated “People just look at me and I know that they laugh at me whenever they see or hear my tics…and of course it affects my way of thinking. Sometimes I just cry whenever I feel like they are judging me.” Izzy spoke about “holding” other people’s responses and stated “it’s so exposing, and just one negative response can sit in my brain for so long, and really fester, making me feel very self-conscious, frustrated, emotional.”

For some, this sense of being monitored by others appeared to result in them monitoring themselves, too. Harriet stated “I get anxious about my tics and what's going to come out next and what people are going to say.” Participants appeared to feel unable to act with autonomy, instead relying on cues from others to determine how they ‘should’ be. This is further suggested by the fact that the majority cited other people’s responses as the most challenging thing about having TS.

Subtheme 2: “I Don’t Trust My Instincts”

Participants alluded to questioning what is truly them and what is their TS, with several feeling that there was something inauthentic about themselves. Jess stated “I've definitely wondered whether or not I'm faking [TS]…and maybe I’m just doing it for attention…I generally don't trust my instincts…I tend to go by what other people think.” This suggested uncertainty around the question ‘who am I?’.

Some speculated that others viewed them as “faking” tics or “attention-seeking”. This seemed to be at least partly a gendered perspective, with Kate saying “People think girls are more attention-seeking…if a guy’s doing it, they’re like ‘oh, it’s just them being them’”.

Tic suppression and co-occurring diagnoses appeared to influence feelings of inauthenticity, leading to increased uncertainty around identity. Kate stated “from the start, I was able to suppress a bit…and I was like ‘if I can suppress this, is this really happening?’…I had other mental conditions and I was like ‘is this just something else I’m adding on?’” Diagnosis seemed to mediate this for some, with Eve stating “I've had doctors say my tics are just bad habits…I'm pretty confident in my identity of what I am as a person, and I know I’m not faking my tics. I know that I have a legitimate doctor's diagnosis that I have Tourette’s”. For others, even formal diagnosis did not remove the self-doubt. Georgia commented “Even though I got diagnosed 9 years ago, you do sometimes still go ‘am I faking it?”.

Subtheme 3: Tourette’s Hides Me

There was a general sense that participants did not feel they had space to discover themselves or portray who they are to others because of their TS. Several shared the experience of not being referred to by name; instead becoming “the girl with TS”, while Izzy commented “Tourette’s takes up quite a lot of room.” Georgia noted “A normal person, they go ‘hi, my name's so and so’ and that’s it, whereas I might have to go ‘hi, my name’s Georgia, I have this’…I don't want to go around spewing out key words and definitions to everybody. I just want to be me.”

Some outlined a sense of invisibility, feeling that the ‘real them’ was masked by TS. Kate described herself as “Kind of hidden, I guess. Like, when I meet new people, all they see is the Tourette’s…they’re like ‘oh, you have Tourette's that's really cool, let's be friends’ and it’s like, I'd rather be friends over something else about me, not just being the entertainment value of the group.” Izzy reflected “I've definitely battled this internal thing for years about whether people like me for who I am, or they find me entertaining to be around…I sometimes feel that people like the presence of my tics and the humour that brings…over me as a person.” This highlights how even when TS is positively received by others, this can be detrimental to identity when individuals feel reduced from a ‘person’ to a ‘condition’.

Theme 3: I’m a “People Pleaser”

Most participants spoke about having increased awareness of others’ needs as a consequence of their TS, which manifested in polarised ways: ‘empathetic growth’ and ‘self-sacrifice’.

Subtheme 1: Empathetic Growth

Participants suggested that TS can lead to personal growth through becoming better able to relate to others with genuine empathy. The majority described themselves as “empathetic”, “compassionate” and “helpful”, and directly connected this to their TS. Most derived a sense of purpose from this and some discussed hopes to incorporate this into their careers. Danielle explained “It's definitely made me a lot more open minded to other people being a little different, especially people who are neuro-diverse…it's like, ‘okay, I get how your brain works”, while Harriet said “It’s definitely made me a more accepting person. If someone’s a bit different, like me, I can empathise with them and understand it…because I’ve been through being different.” Kate also reported that TS had made her a “better person in understanding other people” and wondered “if I’d never had it, what sort of person would I be?’”. These responses point towards participants embracing TS as an important factor in self-development and identity.

Subtheme 2: Self-Sacrifice

A pattern was found in some participant accounts relating to prioritising others’ needs over their own. This appeared to be connected to participants viewing themselves as “annoying” and believing others also find them annoying or somehow objectionable. This seemed to lead several to engage in compensatory behaviours. Amy described herself avoiding confrontation “at all costs” and stated “I’ve always been kinda like…a people pleaser…even if I’m not ok mentally or physically, I’ll figure out a way to help someone else…Sometimes I’d rather help someone else than myself.” Caroline also referred to herself as “a people pleaser” and stated “If someone asks me to do something for them, I’ll always say yes…sometimes it's not great because I end up with 58 things on my to-do list that week and half is for other people.” Georgia described herself as “a passive person”, explaining this meant “caring so deeply for someone else's needs that you give up your own”. She reflected “I should look after myself more.” Others spoke about suppressing their tics for the benefit of others, at the expense of their own comfort. These accounts are suggestive of low self-worth.

Theme 4: Seeing Oneself as an “outsider”

The majority of participants appeared to see themselves as excluded from mainstream society. Three subthemes were derived: ‘isolated’, ‘feeling “less than”’ and ‘meeting others with Tourette’s’.

Subtheme 1: Isolated

Feelings of isolation occurring as a result of TS were very apparent across interviews. The terms “othered”, “outsider”, and “odd one out” were used by participants to describe themselves. Farah explained how her sense of abnormality left her feeling disconnected from others, stating “it’s really not normal…whenever I think of that, I just feel like I don’t belong in this circle of friends.” Georgia described how stigmatising responses to her coprolalic tics made her feel “more alien”, also suggesting a lack of belongingness.

Bella spoke about feelings of insecurity in relation to her TS which she linked to social rejection. She stated “on top of feeling like I've been ostracised from neuro-typical people, I also had a sense of feeling ostracised from the neuro-divergent society because my TS isn't debilitating”, conveying a belief that she did not meet ‘criteria’ for membership of either community.

Caroline highlighted how not meeting another person with TS until she was 23 left her feeling isolated, stating “For a young, especially girl, to not have anyone in her life that she can identify with growing up, it’s pretty hard on your sense of self, because it made me feel quite alone in who I was for a really long time”. Harriet spoke about feeling isolated prior to diagnosis: “I felt so low and like I was the only person experiencing it because I didn’t have the official piece of paper that said I had what I had”. It may be that diagnosis and meeting others with TS offer a sense of validation that is otherwise difficult to find.

Subtheme 2: Feeling “Lesser Than”

Participants shared experiences of being “pitied” or “treated delicately” by others. Several described people assuming that they lacked capability or were intellectually disabled, with some conceptualising this as a gendered phenomenon. Bella said “a manager will 100% believe that a man will have more capability to control himself and his tics…there's this notion that men with disabilities are able to fit into society better than women.” She also described feeling “lesser than” others and explained “whenever people perceive [neuro-typical people] at face value they perceive them as ‘normal’, ‘like me’, ‘competent’…people…look at me for example and say, ‘okay, well she’s already struggling with something so maybe she won't be as competent, as able, as good as this other person’”.

Participants also spoke about internalising a sense of being “not good enough” due to discrimination and media representation of TS. Kate commented “When you see someone with Tourette’s on a show like Undateables, you’re like ‘oh, am I undateable as well?…It kind of makes me feel retarded…like ‘ok, I guess I'm not of worth to anyone because I have this.’” Others described a reluctance to accept support or utilise disability schemes due to feeling the need to ‘prove’ themselves. Referencing employment, Caroline stated “I want to do well…because of my merits and the things that I do and how hard I work, rather than a pity interview because of Tourette’s…I'm always scared that people will think I've got something because of it rather than because I was good enough.”

The lack of available support for adults with TS also appeared to contribute to participant’s view of themselves as ‘lesser than’. Kate described how difficulties in accessing support had made her feel "worthless, because no-one really cares”, while Caroline stated “once you hit 18, you feel a bit like ‘oh, we’re not gonna care now…you’re not a child, you’re not interesting anymore’”.

Subtheme 3: Meeting Others with Tourette’s

Ten participants highlighted the value of connecting with others with TS and described this as a positive influence on their identity, going some way towards buffering feelings of abnormality and isolation.

Discussing a TS support group she joined, Farah stated “There I find the comfort that I didn’t feel all of my twenty years of having Tourette’s. It feels like I’m the only one who has Tourette’s but it turns out there’s a lot of people.” Others spoke about the sense of validation that came with connecting with others with TS. Danielle described feeling “very isolated” before meeting others with the condition, going on to say “seeing other people that were going through the same emotions and the same journey that I'd been going through…it definitely made me a lot more accepting of myself and my own tics and not feeling like I have to hide them.”

The sense of understanding offered by others with TS was also mentioned. Harriet said “you can tell [people without TS] all the time what a tic feels like…but they won’t understand it fully, whereas someone who’s got Tourette’s understands it fully.” Kate referred to meeting another female with TS as especially helpful, saying “She understands the expectations for females and that it's hard to be so different from what people expect.” These connections may benefit self-identity by offering a sense of verification for participants that who they are is relatable.

Meeting others with TS also offered some participants a sense of optimism about their future; that they could continue to develop beyond how they thought of themselves currently. Caroline recalled “When I went to a support group…I met four or five women…who were married and had kids and jobs and doctorates…and I never thought that I could. I’d never seen a girl grow up with Tourette's and get married…I'd never seen women with Tourette's with a job.”

Theme 5: “It's Just Part of Me…it's Not Going Anywhere”

Each participant described how they positioned TS in relation to their self-identity, with a number of stances emerging as four subthemes: ‘”held hostage” by Tourette’s’, ‘hiding Tourette’s’, “I have other aspects of myself” and ‘embracing Tourette’s’. Participants generally fitted into multiple subthemes, though it seemed each had a dominant way of relating to their TS currently.

Subtheme 1: “Held Hostage” by Tourette’s

Several participants spoke about feeling under siege by TS. A number used the analogy of ‘a devil on the shoulder’ to explain feeling at the mercy of their TS, suggesting they viewed themselves as powerless or lacking autonomy. Jess described feeling “held hostage”, stating “I feel like I’m being controlled by this separate entity…it doesn’t have its own body so it just uses mine”. Eve commented “I can't really be as independent as I could be”, again pointing towards a loss of autonomy.

Participants expressed how their TS caused them to engage in behaviours which felt disconnected from the person they want to be. Izzy described feeling “frustrated” due to experiencing aggressive tics which are “not naturally a part of who I am”. Kate commented “I don't really wanna go past the church and swear at the old ladies…if I didn't have Tourette’s, I wouldn't be the sort of person who would just go and say something rude to somebody”. After receiving disapproving responses to her tics, she recalled “I just felt like an annoying person. And I didn't want to be an annoying person, so I was upset”. There was a general sense of losing one’s ‘true’ identity; that participants could not be the person they were meant to be because of TS.

Subtheme 2: Hiding Tourette’s

Participants reported going to great lengths to conceal tics in anticipation of judgement from others or wanting to avoid “awkward questions.” Techniques used to hide tics included suppression, social avoidance, “blending” tics into other behaviours and explaning tics as “allergies”. Farah commented “Sometimes I’m the one who isolates myself from them so that they can’t see my tics…I never mention my condition to anyone.” By making efforts to hide tics, self-stigma is apparent.

Others described how they had even attempted to conceal their TS from themselves, not wanting to acknowledge it as part of their identity. Danielle recalled how realising her tics were not remitting after adolescence “completely destroyed” her self-esteem and explained “There was a lot of not wanting to admit that it was a part of who I was…I’d be like ‘no, I wasn't ticcing, my eyes were just blinking because they had something in them’”.

Some participants noted that attempting to hide their TS increased their unease with it. Georgia reflected “I used to kind of see it as this page with a sheet over it, with a padlock on, and it would be like my Tourette’s monster…It was something that I can't…show anybody and I want to keep hidden away from me and the world. Now I see it's more like a cat. It's a bit of an arse, but once you understand it, it’s ok.”

Subtheme 3: “I Have Other Aspects of Myself”

For some participants, separating TS from themselves allowed them to direct frustration towards the TS, enabling self-acceptance. Izzy commented “I can separate the frustration to the tics rather than to me…I’ve grown into an awareness of just how involuntary it is and I guess I can forgive myself because I know I’m capable in lots of areas.”

Making this distinction also gave participants space to see who they are beyond TS. Bella explained that TS had become “basically the whole part of my identity”, but enthusiastically recalled a conversation with her partner: “one of the most important things that I remember him saying is ‘…your TS isn't who you are, it’s a part of you, granted, but you're ashamed of yourself because of this one tiny aspect’…that was a nice first experience of ‘oh…I'm a human being, this isn’t all me, I have other aspects of myself’”.

Eve explained that TS did not significantly affect her self-esteem and stated “if I woke up tomorrow and suddenly didn't have Tourette’s, I’d still be the same person…I just wouldn’t have Tourette’s. It doesn't define who I am. I’m not a person with Tourette’s, I’m just Eve”. This may suggest that developing a strong idea about who one is outside of TS can help in establishing positive self-identity.

Subtheme 4: Embracing Tourette’s

Most participants understood their TS as important to their sense of self, describing it as “part” of them or “making them who they are”. Farah stated “it’s me…it classifies me, people know me for my tics”, explaining that this was both a positive and a negative, with positives including more energy and closeness in her relationships.

Participants commented that they had found it easier to live with TS after acknowledging it as part of who they are. Danielle commented “The more I accepted my Tourette’s, the more it made sense why I do certain things, you know, it was overcompensation…now I just get on with it”, while Bella said “I could just not talk about it but that wouldn't change the fact that I have TS…it's been better ever since I've started claiming that part of myself.”

Several participants spoke about reaching a point where they “embraced” their tics, and it appeared that incorporating TS into their self-identity had allowed some a sense of mastery. Caroline hid her tics as a child and recalled asking her mother “why I couldn't have been someone else”. However, she spoke about “owning” her TS as an adult, using it to her advantage in stand-up comedy. She remarked “It gives me a brand".

Interestingly, Jess referred to her tics as “empowering” and likened her experience with TS to having “undergone a Pokémon evolution.” She explained that before her tics became noticeable she had been a quiet person, but TS had given her “the confidence to speak my mind, with less fear of getting something wrong or being judged…because I feel like I’m judged all the time anyway…If it just went away tomorrow, I'd be very pleased that I wasn't ticcing anymore but also I'd be a bit worried that I'd go back to the person I was before.” This indicates that TS has positively contributed to her self-identity through personal growth.

Discussion

These findings offer a novel contribution to the limited evidence base around the self-identities of women with TS.

The feeling of abnormality that most participants shared seemed to reduce self-acceptance while increasing self-stigma. This echoes previous literature, which found that 90% of women reported that tics made them feel ‘abnormal’ (Lewin et al., 2012). This may have significant repercussions for wellbeing given that stigma increases shame and may deter a person from seeking support (Cox et al., 2019). With respect to Erikson’s theory of psychosocial development (1959), this negative sense of self may suggest that young women with TS struggle to resolve conflicts at particular stages of identity development. For example, failure to establish self-identity at the ‘identity versus role confusion’ stage may result in isolation and uncertainty about which societal groups they belong to. This could have implications for transitions in early adulthood, such as career development and forming intimate relationships.

Some participants saw positives to their difference. This reflects the results of the TS Impact Survey (Conelea et al., 2013), in that most respondents understood their difference as an abnormality, while a small minority felt their tics made them special or unique.

The role of gender in the identities of women with TS is a new perspective which featured in several themes. Women with TS may be at particular risk of stigmatisation and subsequent negative self-identity due to ‘breaching’ traditional gender roles. As highlighted by Robbins (2012, p. 1) ‘Society sends strong messages about who women should be, what women should be, and how they are supposed to look and behave.’ This is important to acknowledge as stigmatising experiences may negatively impact self-identity (Quinn & Earnshaw, 2013). It is therefore important for clinicians working with women with TS to consider how females are positioned in an individual’s culture. One way of doing this is to ensure assessment and formulation draws on contextual information. As stipulated by the BPS (2011, pg. 12), best practice formulation should incorporate “a critical awareness of the wider societal context.”

Literature suggests that women are subject to the ‘watchful eye of others’ to the extent that they ‘internalise their sense of self…according to how others perceive them’ Robbins (2012, p. 22). The profound self-consciousness that many participants described is reflective of this. However, other evidence suggests that those with TS do not experience different levels of self-consciousness than the general population (Thibert et al., 1995). This disparity may be due to the present sample consisting wholly of women, as tics are often more in line with stereotypically male traits less, such as being loud or aggressive.

For some participants, scrutiny from others appeared to feed into compensatory ‘people-pleasing’ behaviours, whereby other’s needs were prioritised. This supports the theory that women are socialised to have a relational sense of self, ‘placing greater importance on the needs of others…at a psychological cost to themselves’ (George, 2016, p. iv). Such lack of self-care may take a significant toll on psychological wellbeing.

Data showed indications of self-stigma and low self-worth, despite the majority of participants being high-achievers in academic and educational domains. It may be that the negative impact of living with TS, including stigma and isolation, overshadows personal successes. Participants also communicated a sense of having to ‘prove’ their capabilities, suggesting that their achievements may receive less recognition both from the individuals themselves and those around them. For those with TS who do not share in such achievements, self-worth may be further impacted due to fewer experiences which buffer against the impact of the condition.

Participants appeared to struggle to establish self-identity, feeling hidden by TS either because it removed their autonomy or because those around them were preoccupied with it. Though most attempted to conceal tics, embracing TS was linked to feelings of mastery and self-acceptance. Concealing or suppressing tics may damage psychological wellbeing as it creates physical discomfort (Cox et al., 2019) and could encourage a belief that tics are controllable, perpetuating concerns an individual may have around ‘faking’ symptoms.

Strategies which position TS as only one element of the self could help in developing an identity beyond the condition. Narrative approaches may achieve this by encouraging an individual to ‘re-author’ the story of their difficulties (Madigan, 2011). In one case report where narrative therapy was used, a man with TS was able to recognise other elements of himself and reflect on the positives that TS added to his life (Nasim, 2010).

Given that participants reported difficulties with self-stigma; compassion-focused therapy (CFT) approaches which encourage self-acceptance and the development of self-worth may be helpful. It has been suggested that responding to individuals affected by TS with compassion can support them to view their condition more positively and encourage self-acceptance (Freeman-Ferguson, 2022). CFT approaches may also reduce the impact of external scrutiny; potentially alleviating co-occurring anxiety and depression. No studies which apply CFT with TS populations could be located, but this may be an important avenue for further investigation.

Disparity between personal values and TS was reported. Acceptance and commitment therapy (ACT) approaches may therefore resonate with this group, allowing them to maintain a sense of who they are beneath TS. The limited research into the use of ACT with tic disorder populations shows promise. When combined with behavioural therapy, ACT has helped to reduce tics and improve psychological flexibility and quality of life (Franklin et al. 2011; Morrison & Twohig, 2015). Self-help workbooks are publicly available online for ACT and CFT, and could have utility for this group given the limited access to services.

Most participants viewed themselves as empathic and committed to helping others, attributing this to challenges faced with TS. This finding is valuable as helping behaviours positively correlate with wellbeing (Post, 2005). However, there is a balance to be had between helping and ‘people-pleasing’. There was implicit suggestion that the ‘people-pleasing’ behaviours some described were driven by a need for acceptance. It may be that participants viewed themselves as belonging to an ‘out-group’ and so made significant efforts to be accepted by the ‘in-group’, devaluing their own needs in the process. This may also be connected to the acute awareness of judgement from others that many reported.

The availability of specialist support for TS substantially reduces after a person turns 18, increasing the sense of isolation in adults (Kompoliti, 2015). This also appeared to compound feelings of ostracisation and inferiority for participants. With respect to chronic conditions generally, though both men and women experience discrimination, the lower social standing of women means they are more marginalised (Vlassof, 2007). Given the correlation between isolation and mental health problems (Loades et al. 2020), improved access to psychosocial support for those with TS is needed. Support groups which present the opportunity to connect with other adults with TS were particularly valued by participants, contrasting findings from Smith et al. (2015) that those with tic disorders avoided others with similar conditions in fear of belonging to ‘rejected’ societal groups.

Clinical Implications

These findings highlight the need for interventions which go beyond tic management to address the psychosocial consequences of living with TS. It is clear that support groups provide a vital space for women with TS to feel validated and less alone in the many challenges they face. Provision of groups for adults or women specifically is recommended, as there was a sense that an ‘adults only’ space was needed. More signposting to peer support and self-help materials by neurologists, psychiatrists, GPs and other professionals who come into contact with those with TS is encouraged.

Future Research

Researchers may wish to build on findings about how gender identity intersects with TS identity. There is also a need for further exploration around how young women with TS negotiate broader aspects of identity in early adulthood, such as belongingness, intimate relationships and career development. Research around the application of ACT, CFT and narrative interventions with tic disorder populations is scarce. Further evaluation of these is warranted, as is the use of self-help materials which draw on these models. Investigating how self-acceptance and connection with values may impact on mood-related difficulties in TS populations could also be valuable, as could evaluation of peer support groups.

Limitations

The limitations of this study are acknowledged, including the researcher’s lack of expertise in TS. Input from an expert may have improved confirmability of findings (Korstjens & Moser, 2018). It may have been useful to ask the 17-year-old who gave feedback on the interview schedule whether findings resonated with her, though the time constraints of the write-up were a barrier.

Several participants commented on finding it difficult to separate co-occurring conditions from TS when thinking about their identity, which may have influenced findings. However, given that approximately 90% of individuals with TS experience co-occurring conditions, including those with only TS would have made recruitment difficult and been unrepresentative of the overall TS population.

The sample may be biased in some ways. Firstly, those who volunteer to participate may do so due to having strong feelings about a topic. Secondly, the majority of participants came forwards after seeing the advert shared by Tourette’s Action or in Facebook TS support groups. This may suggest that most were already connected with some form of support, potentially influencing findings. Thirdly, the sample consisted of women aged 18–28 who were generally well-educated and from Western countries. It is acknowledged that findings may therefore not be representative of the overall adult TS population.

Conclusion

This study offers insight into self-identity in women with TS and the need for psychosocial support. Gender stereotypes may leave these women vulnerable to external and self-stigma, but support groups appear to mitigate this to some extent. Interventions which encourage acceptance of TS may help women to recognise aspects of themselves beyond this condition.

Supplementary Information

Below is the link to the electronic supplementary material.

Authors' Contributions

Both authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Janine Coleman. The first draft of the manuscript was written by Janine Coleman, and both authors commented on previous versions of the manuscript. Both authors read and approved the final manuscript.

Availability of Data and Material

Raw data is available on request and has also been submitted to Staffordshire University.

Code Availability

Not applicable.

Compliance with Ethical Standards

Conflicts of Interest

The authors have no conflicts of interest to declare that are relevant to the content of this article.

Ethics Approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was obtained from the Ethics Committee of Staffordshire University.

Consent to Participate

Informed consent was obtained from all individual participants included in the study. All participants signed consent forms.

Consent for Publication

All participants were provided with a participant information sheet which explained that the authors intended to submit this study for journal publication. All participants signed consents forms stating that they understood this fact and consented to this.