What’s it like to live with uncontrollable tics (Tourette Syndrome)?

Affecting around 1 per cent of the world's population, Tourette Syndrome (TS) is described by the NHS as a neurological condition "characterised by a combination of involuntary noises and movements called tics". What is it like for children, teens and adults to live with this diagnosis? A new study in the British Journal of Psychology rounds up all that we know so far, based on published research.

Heather Smith and her colleagues found 10 relevant studies involving interviews with 132 people of both sexes who had been diagnosed with Tourettes (a further 124 people – health professionals and relatives of those with Tourette's – were also involved). The interviewees were located in the UK, Spain, the USA, Canada and Australia. Their testimony paints a sad picture, but there are also glimmers of hope. As you read on, it's worth bearing in mind the message from the charity Tourettes Action: "People with TS can live a perfectly happy and normal life and children do cope with the issues."

Six main themes emerged from the new "meta-synthesis" of studies, and all were found across the lifespan. The first related to the interviewees' frustrations about how their condition is perceived by society at large and also by people close to them. For example, one teenager expressed her frustration at the widely held, but mistaken, belief that the condition always involves swearing-based tics (in fact, this symptom only affects around 10 per cent of people with the condition). Others described how people interpreted their tics as a sign of naughtiness and/or found them annoying, and assumed they were under their control.

On that last point, one adult interviewee said a typical reaction from people was: "… if you weren't in control of this, all kinds of words would be popping into your mouth. Don't tell me it's just an accident you're saying that!"

Another theme was how people with TS felt they were treated by their schools and workplaces, and the experiences they had there. One teenager said: "In class, I felt embarrassed, I couldn't pay attention because I heard a laugh and I thought my colleagues were laughing at me." Although there were some reports of supportive teachers, many felt that teachers misperceived their symptoms as inattention or rebellion.

On the theme of treatment, many of the interviewees expressed negative views of health professionals – there was a perception that they often lacked knowledge and sympathy. Pharmaceutical treatment approaches were sometimes described as helping remove tics but at the cost of other side effects, such as fatigue and weight gain.

The participants also described how TS affected their relationships, including with their parents. They told how tension can arise because parents want to hide or justify their child's tics, while the young person wants the right to be open about their condition, leading many to feel stigmatised within their own family. "My dad didn't just tell me to stop," said one male teenager, "he used to shout at me and make me stop it, and that's what made me worse."

Concerns about the future was another theme, including fear of having a child with the condition and worries about the effects of medication. The interviewees also talked about their coping strategies including creating opportunities to express tics when alone, and hiding tics by pretending to perform another action (e.g. rubbing the eyes to conceal blinking tics). Some of the young participants said they often resorted to humour: "Every time I meet someone new it's almost as if I try and be funny and make them laugh," said another teen participant. "But that's just me covering my tics, and then everybody just thinks that I'm weird from that moment on."

On a more positive note, although many young people described their TS as "distressing" and "disabling", some reported an acceptance of their condition: "Well, I suppose if I didn't have it I wouldn't be myself" said one 17-year-old boy. There were also descriptions of supportive peers, and one recent study the researchers looked at indicated that levels of bullying were lower than in earlier research, suggesting the social stigma of the condition may be in decline. Also, some interviewees were hopeful about the future, believing that their tics were likely to reduce as they got older.

The researchers said the quality of the studies they reviewed was overall rather poor and that more qualitative research is needed, but that their synthesis had captured "the complexity of the individual's lived experience". Concluding with a message that will likely resonate not only with people diagnosed with TS, but with anyone living with a challenging condition, the researchers also argued their results suggest that rather than interventions focusing on changing individuals with TS (for instance through hiding or suppressing tics, which may only serve to increase social stigma), "a more adaptive approach could be to focus on changing the environment – for example, through acceptance by peers."

Further reading

Smith, H., Fox, J., & Trayner, P. (2015). The lived experiences of individuals with Tourette syndrome or tic disorders: A meta-synthesis of qualitative studies British Journal of Psychology, 106 (4), 609-634 DOI: 10.1111/bjop.12118