Tourettes Is a Lonely Place: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette Syndrome

Posted on 24 June 2019

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Dr Melina Malli, *Professor Rachel Forrester- Jones and Dr Paraskevi Triantafyllopoulou from the University of Kent received funding from the National Institute of Health Research, School for Social Care Research (SSCR) to find out about any difficulties adults with Tourette Syndrome may experience in their everyday life. They also wanted to find out how it feels to have Tourette Syndrome during adulthood.

Although there has been a lot of research about the experience of having Tourette Syndrome as a child or a teenager, only a few studies have investigated adults.

Our study looked at how adults with Tourette Syndrome felt about themselves and how the condition has affected their lives. The researchers interviewed 16 adults with Tourette Syndrome (twelve males and four females).

Some of the adults felt that having Tourette’s did not define who they were. Participant 9 told us: “It's a small part of the whole. This is a small part of what you are. As much as, say, someone who picks their nose and then hides it behind the sofa or something. It is as much as that as one hobby. Humans can't be defined by just one aspect…a part, there are a lot of things about you. So, it's just a part of, not the defining whole”.

Some others however felt that the condition held them back from doing what they wanted to do in their lives. Participant 14 revealed:  “It has completely messed up my life to put it politely. If less severe, that would be difficult at times but at least I could still do things. I feel fortunate that when I was young I had no tics and for many years, they weren’t severe enough to cause too many problems, but at this severity I struggle with it. So, I did have a busy life back then, working hard but also having lots of fun, travelling all over the world.”

Mostly however, people discussed their experiences of bullying and stigmatisation: “My parents …they were horrible to me. They thought by telling me off or slapping me or whatever, punishment, you know, name calling…they thought that I would stop doing it. They thought it was something, you know, that could be stopped. So, ended up like watching television together and back in the days we had one television. So, I would have to sit behind the family, so they wouldn't get distracted. And they would humiliate me in public, you know, they would say stop being a monkey and then my sisters obviously because they were... they saw my parents having a go at me and bullying me for that they would do exactly the same” (Participant 9)

What also became apparent was that adults with Tourette’s experienced loneliness due to their condition, often because they avoided people -  they did not want others to judge them, so they preferred to isolate themselves: “…the tics really made me less likely to reach out socially. Well, to socialise at all or to seek out friends, cause I was worried about being the joke” (Participant 3).

They also felt isolated because age-appropriate resources did not seem to be available. Where as social and emotional support was available for children with TS and their parents, resources for adults were limited and could not be easily accessed.   “At the age of 16, I was just pushed over the edge and told to get on with life. I've not had any inquiries or contact from anyone regarding it…since the age of 16. That was it. That was the end of my care as far as anyone was concerned” (Participant 15)

“A lot of information they [relevant organisations] were providing was mainly geared towards children with Tourette's syndrome and parents that have children that have Tourette’s. And there was not much for adults, so I have to say...I had to figure out a lot of things all by myself” (Participant 9).

The study shows that:

• Clinical approaches should aim to facilitate the development of positive Tourette’s identity -  focussing on the positive traits associated with the condition.
• Due to the stigma attached to TS, individuals with the condition should be offered psychoeducation/supportive therapy to educate them about TS. This would also help reduce their anxiety.
• Cognitive behavioural approaches can be effective in challenging irrational self-stigmatising beliefs, and replacing them with more rational and positive beliefs.
• This population may inadvertently be experiencing a violation of their rights; including not to be discriminated against, and the right to  access health and social care (see UK Human Rights Act (HRA) 1988 and The Convention on the Rights of Persons with Disabilities (CRDP), which the UK signed up to in 2009.
• Whilst this research unearthed the complexity of experience of people with Tourette Syndrome, there remains no specific policy guidance that safeguards their human rights to ensure their inclusion in wider society. Policy that aims to improve the quality of life of people with TS, which mirror White Papers for people with for example, learning disabilities (see Valuing People (HM Government, 2001) and Valuing People Now (HM Government, 2009)), need to be developed for people with TS.

This work was funded by the National Institute for Health Research (NHIR) School for Social Care Research (SSCR) under Grant C088/CM/UKJF-P118.

The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR SSCR, the National Institute for Health Research or the Department of Health and Social Care.

You can read the full article here.

*Rachel Forrester-Jones is now Professor of Social Policy at the University of Bath

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