Following its massive success at the BAFTAs, I Swear has got everyone talking about Tourette syndrome, an inherited neurodevelopmental condition that affects more than 300,000 adults and children in the UK.
The film's star, Robert Aramayo, beat out Hollywood A-listers, such as Leonardo DiCaprio and Timothée Chalamet, to take home the gong for best actor for his performance in the biographical project that depicts the true story of John Davidson MBE, who lives with the condition.
Characterised by outbursts of tics and expletives in pop culture, the misconceptions about the syndrome are widespread, but what is it actually like living with Tourette's?
After a controversial moment at the British award ceremony celebrating TV and film, during which a racial slur was shouted at Michael B Jordan and Delroy Lindo from the audience, sparked a conversation about the general public's understanding of the condition, we consulted the experts who outlined and highlighted some of the biggest misconceptions associated with TS.
What is Tourette's syndrome?
Before diving into the misconceptions attached to the condition, we need to first outline what it actually is and what the title describes.
Dr Lisa Davies is a Priory Consultant Child and Adolescent Psychiatrist and Tourette syndrome specialist. She explained the syndrome to HELLO! and said: "Tourette syndrome (TS) is a genetically determined neurological condition and is diagnosed based on the presence of motor and vocal/phonic tics, which must be present for at least 12 months.
"It affects one in a hundred children. Many more children will experience transient motor tics during childhood-up to 20 per cent (one in five) of boys."
The expert went on to outline the intricacies of tics and how they can change from person to person and are dependent on their anxiety.
"Tics can change in terms of their body location, intensity, frequency and severity over time. Tic severity can be affected by the environment, including feeling anxious, tired, or angry. Although tics are involuntary, some people can suppress their tics for a period of time. Sometimes the tics come back more after a period of suppression."
Patients who have coprolalia or say inappropriate things as tics are often misunderstood and judged.
What is the biggest misconception associated with TS?
More often than not, Tourette syndrome is portrayed in the media, films and television as a condition that only produces a symptom of involuntary swearing, otherwise known as coprolalia. However, Dr Lisa revealed this is not usually the case for people with the condition.
She highlighted: "The diagnosis of Tourette syndrome is often associated with swearing (coprolalia) or saying socially inappropriate things, e.g. racial or sexual, but this is not a criterion for diagnosis.
"Only 10-30 per cent of people with Tourette's syndrome have these symptoms. Coprolalia is an involuntary, offensive tic. The words are not intentional and do not reflect the individual’s values, beliefs or what they are thinking."
The expert added: "Patients who have coprolalia or say inappropriate things as tics are often misunderstood and judged. This may lead to isolation, distress, anxiety and depression. Some people with these tics may not feel safe at school/employment or in the community."
© PA Images via Getty ImagesAn unhelpful stigma due to media attention
In the wake of the BAFTAs incident, Dr Lisa urged people to be aware that, like most conditions, TS has a spectrum. She outlined why a stigma set by the media's emphasis on the more sensational symptoms of the condition is harming clinicians' ability to treat and help families dealing with this diagnosis.
"The media’s focus on the severe end of the spectrum has resulted in a stigma attached to the diagnosis of Tourette syndrome, and for this reason, the diagnostic label can be unhelpful to families," she said.
Dr Lisa continued: "As clinicians, we tend to find it more helpful to emphasise the diagnosis of tics as on a spectrum. This spectrum ranges from mild cases of low intensity tics or more severe cases of high intensity, complexity and frequency of tics – typically portrayed in the media.
"Up to 85 per cent of people with Tourette syndrome may have co-occurring symptoms of obsessive compulsive disorder (OCD), anxiety, attention deficit hyperactivity disorder (ADHD) and autistic spectrum condition (ASC). It is therefore important that when young people presenting with tics are seen by a clinician, all conditions are assessed to inform the most appropriate care."
Take time to understand and be kind. Put yourself in their shoes.
What it is really like living with TS
Despite films like I Swear attempting to offer a window into life with the syndrome, we wanted to know what it was really like navigating the condition from a clinician's lens. As someone who helps TS patients on a regular basis, Dr Lisa began by explaining: "There is a nationwide lack of services available to assess and treat people with Tourette syndrome.
© Mike Marsland/WireImage"Every person with tics has a unique experience of living with their tics. Some people with mild tics experience significant impairment. The severity of tics is not necessarily proportional to impairment. It is therefore essential to evaluate and understand how the individual’s tics affect their levels of distress, self-esteem, family life, social acceptance and functioning and how they interfere with behaviour - including speech and communication.
"It is important that we continue to educate others to reduce the misconceptions and stigma associated with Tourette syndrome. When interacting with someone with tics (or indeed other disabilities), it is helpful to be mindful of our behaviour and responses. Take time to understand and be kind. Put yourself in their shoes."
© PrioryDr Lisa Davies, a Priory Hospital Roehampton Child and Adolescent Psychiatrist and Tourette syndrome specialist. Dr. Davies worked as an NHS outpatient consultant for over 14 years, first in Merton (2008–2016) and then in Kingston (2016–2022) before taking on her current role.
