Tourette Syndrome (TS) is a condition that can cause a person to involuntarily move or make sounds. These actions are known as tics. Symptoms often start in childhood but can sometimes improve with age.
The exact cause of Tourettes is not known but it is thought that there is some disruption in the part of the brain that helps to regulate body movements.
The severity of the condition can vary greatly and not everyone diagnosed with TS will require treatment. But where it is recommended, treatment for Tourettes may include behavioural therapy and in some cases medication.
To discuss this oft misunderstood condition further, we got in touch with Helen Eadie at UK-based charity, Tourettes Action.
She gave us some valuable insight into some important aspects of the condition such as:
As we have already mentioned, it is possible to experience varying levels of TS. So, just how important is it for those experiencing symptoms of TS to receive a diagnosis?
Helen tells us: ‘The answer to this will be very personal to each person who has Tourette's symptoms. Tourette Syndrome (TS) is a spectrum condition and those with very mild symptoms may not feel it is necessary or indeed helpful to receive a diagnosis because their symptoms have minimal to no impact on their daily living. However, other people with more complex, difficult tics might feel a diagnosis is paramount to them receiving help, support and above all else – understanding.’
How might a diagnosis of TS help someone struggling with their symptoms?
Helen goes on to explain: ‘TS is still a very misunderstood neurological condition; so fundamentally a diagnosis provides a framework for the person experiencing symptoms and those around them to understand what is happening. A diagnosis can lead to clinical intervention if deemed necessary, and sometimes statutory support. Every person with TS is unique and help and support following a diagnosis is varied.’
A diagnosis of Tourette Syndrome is usually given by a specialist doctor following a referral from a GP. A doctor may decide on a diagnosis of TS by observing and evaluating a patient’s symptoms. They usually look for tics that have been present for at least 12 months. It can also help for patients to keep a diary of the movements and vocalisation that they experience. Diagnostics, such as blood tests and scans, may be used to rule out the presence of other conditions.
The stigma and common misconceptions that are frequently associated with TS might make it difficult for someone who has not come across the condition to understand just how much of an impact it can have on someone’s daily life.
Helen explains: ‘TS can impact on different aspects of life – you can broadly categorise this into physical and mental health, employment, education and social life.’
Physical and mental health
The nature of TS tics means that they can occur sporadically throughout the day. This in itself can be draining for the person experiencing them. However, trying to suppress tics can also be mentally and physically draining.
‘Motor and vocal tics are the primary feature of TS.’ says Helen. ‘These range from mild (blinking, throat clearing) to severe and complex (strong body jerks, non-obscene socially inappropriate behaviour, i.e. commenting inappropriately about somebody’s weight, race etc.)
The physical tics can be very painful, even simple ones such as eye blinking if done repetitively over long periods of time. Some tics cause individuals to hit themselves or drop to their knees when walking, which can cause injury and in severe cases cause people to use wheelchairs as they can no longer walk safely. Physical tics can cause chronic aches and pain as they are often repeated many times a day.
In our 2018 survey ‘Why Tourettes Matters’ over 85% of people answering the survey said they had experienced pain or physical damage because of their tics. Also, tics require huge amounts of energy and can leave people feeling exhausted – both physically and mentally. 80% of people who participated in our ‘Why Tourettes Matters’ survey said that having Tourette Syndrome has affected their mental health.
Living with a condition that is physically exhausting and potentially harmful; plus the social isolation and stigma that comes with TS are all contributing factors affecting mental health. 55% of our survey participants said that the stigma surrounding their condition has affected their mental health.’
It is possible for those diagnosed with TS to secure and keep a job but because of the sporadic nature of the symptoms it might seem as though there are roadblocks to accessing certain careers.
Helen tells us: ‘Although many people with TS are in full time employment, there is still a huge stigma surrounding TS and some people feel they are discriminated against because of their condition. 69% of people said they felt discriminated against in our 2018 survey ‘Why Tourettes Matters’.
We know that people feel like their employment options are limited – especially in public facing roles. We receive many calls to our helpdesk from people who are concerned about job applications and interviews and whether disclosing their diagnosis will work against them.
Unfortunately we have spoken to lots of people who feel they are discriminated against by their employer because they have TS, and some people feel this has even cost them their job. There is also the issue of course that for some people full time or even part time employment is not possible because of the severity of their condition. Or a person with TS is only able to work periodically because of their fluctuating symptoms which may not be favourable for their employer.
30% of our survey participants said they had to miss work due to their TS.’
Navigating the education system with a condition such as Tourettes can prove to be tricky for some people. It is important that children diagnosed with TS are given support throughout their time in education.
Helen says, ‘78% of people answering our 2018 survey said that having TS has negatively affected their school experience or education.
Having TS can make concentration particularly difficult at school, because often a child will be preoccupied mentally and physically with suppressing their tics. Or the tics themselves can be a huge distraction to focusing on work. If the right support and understanding is missing from teaching staff and peers, school can be very difficult – with children feeling socially isolated and misunderstood.’
TS symptoms can manifest in a number of different ways, many of which step out from ‘normal’ social constructs. This can make it difficult for those living with the condition to feel accepted and welcomed into certain social situations.
Helen explains: ‘TS is extremely stigmatised. Generally speaking, people don’t understand that it is a complex neurological condition; often it is reduced and ridiculed to being ‘that swearing condition’. This is despite coprolalia (clinical term for a tic that provokes inappropriate language/swearing) only affecting between 15-20% of the TS population.
Public reaction to physical and vocal tics is often fear-based because they don’t understand what they are seeing and hearing as it’s often outside of our ‘social norm’. This can cause unwanted looks or comments towards the person with tics. Some people with TS feel embarrassed and ashamed about their condition. They avoid public places so they don’t have to deal with other people’s reactions.’
Depending on the severity of the condition and potential co-occurring health conditions, TS may require some level of treatment.
Helen says: ‘According to European guidelines, behavioural therapy is the first line of treatment for people with TS. Behavioural therapy can help an individual manage their tics by providing them with the skills to either suppress their tics for short periods of time, or find a competing response to a tic which is more comfortable (physically and/or socially) for the person with the tics.
Medication is another treatment option which can be in isolation or run alongside behavioural therapy. In both cases treatment is a very individual matter for each person with TS.
Behavioural therapy is typically offered to young people over the age of 10 or 11 years, and adults but not everyone with TS will suit behavioural therapy – this might be due to other co-occurring conditions or complex health issues, or they may simply not want to engage fully with this form of treatment. Medication is also very individual, and there is no single drug that is clearly best for all patients.
Not everyone with TS requires treatment because some people’s symptoms will be mild to the point that they require no clinical intervention.’
Because some people diagnosed with TS may also present with symptoms of other disorders such as Obsessive Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD), it’s thought that they could in some way be related.
According to Tic Disorders: A guide for Parents and Professionals (2017) by Chowdhury and Murphy:
‘OCD is a common co-occurring condition of TS, about one-third of individuals with Tourette Syndrome experience recurrent obsessive compulsive symptoms. There is some suggestion that OCD and tic disorders may share the same genetic underpinnings, and there have been numerous studies that suggest qualitative differences between individuals with OCD with tics, and those without tics.
Characteristics of tic-related OCD are:
- More common in males than females
- Earlier age of onset of tics and OCD symptoms
- Poorer level of response to anti-OCD medication
- Increased likelihood of family history.’
It can take a significant amount of time and resources in order to challenge long held misconceptions about health conditions; and this is no different for TS.
Awareness amongst the general public can improve when celebrities, or people in the public eye, open up about their experience with the condition. American singer-songwriter Billie Eilish was diagnosed with TS in early childhood, and she has recently spoken out about her experience with the condition. She has received praise from fans and peers alike for not shying away from this aspect of her life.
Helen tells us about the work being carried out by Tourettes Action: ‘Tourettes Action’s mission is to raise awareness and understanding of Tourette Syndrome. We do this through lobbying and working with organisations such as yourselves to provide information to specific groups and the general public.
We run training programmes for teachers in schools and clinical training for behavioural therapists. We provide training to any groups, organisations and institutions who wish to understand more about TS. Tourettes Action often speaks publicly on national media about TS and actively addresses the commonly held misconceptions.’
If you want to learn more about Tourettes and the work being carried out by Tourettes Action you can visit their website.