Well-known Maltese TV director Steven Dalli was diagnosed with Tourette syndrome around eight years ago, but he has practically lived his entire life with the condition.

“If I had to live my life over again, I would not change a thing but would choose to live with Tourettes as it shaped who I am today,” he told The Malta Independent on Sunday in an interview.   

Tourette syndrome is a neurological condition that causes Steven to make involuntary sounds and movements called tics. Until the age of 25, he was unaware of his condition but has experienced symptoms related to Tourettes since the age of six.

Steven shared his personal experience with the aim of raising awareness and helping others who might be going through a similar experience. He has also created a Facebook page to encourage those suffering from the condition; Tourette Syndrome Malta.

“Although I am no doctor and can only speak from personal experience, I try my absolute best to help others in any way I can,” he said.

Steven recalled how he once met a young boy who was diagnosed with Tourettes and who aspired to become an actor. Steven pushed him to chase his dreams and pursue his ambitions. The young boy did exactly that and ended up being featured in a popular Maltese television series.

He explained that the delay in his diagnosis resulted mostly from the lack of awareness and knowledge about Tourettes in Malta. “It seems that some normal GPs don’t even know what Tourette syndrome is, let alone the means and methods of diagnosing the condition.”

Tourette syndrome is a condition that affects the brain and nerves, causing people to make repeated movements and sounds, also known as motor and vocal tics, that they cannot control. The symptoms usually begin in childhood, can vary from mild to severe, and change over time. For one to have Tourettes means that a person must have at least two different motor tics and at least one vocal tic and has had tics for over a year. If the person has only one of the two, that would mean that the person has some other tic disorder.

 

After 19 years it simply took 10 minutes for a diagnosis

“It was only when I researched the condition on the internet that I found out that I have Tourette syndrome. Together with my family, I decided to visit a neurologist. After 10 minutes, doctors confirmed that I have this syndrome. They asked me a couple of questions and finally, at 25 years of age, I was diagnosed,” he said.

Although the syndrome does not affect Steven’s quality of life in a negative way, as he describes himself to be a very optimistic and determined person, he had his problems, including family members who were concerned with his behaviour, and that upsetting feeling of not knowing what he had.

“When I was young my parents used to take me to doctors who simply said that I’m only nervous as I was a very hyperactive kid. Apart from Tourettes, I also have ADHD, as the condition is a comorbidity of other disorders including autism.”

“With regards to friendships as well as relationships, I managed quite well. I obviously had my problems and faced the occasional bullying, but I am quite an optimistic and focused person who makes sure that nothing and no one brings me down. I believe that if people want to be in my life, well and good, but if not, then so be it.”

“Prior to my diagnosis, my friends used to notice the tics and ask me: ‘Why are you doing this sound?’ or ‘Why are you moving like that?’. I used to find this situation frustrating as I didn’t know how to answer since I was unaware of what I had,” he said.

Speaking about the tics caused by the syndrome, Steven highlighted that they could vary immensely. These include random noises, saying random words and phrases as well as involuntary movements of the arms. Some people also experience involuntary outbursts of obscene words or socially inappropriate and derogatory remarks, but this is quite rare. Steven’s Tourette syndrome is relatively mild as the intensity of his symptoms are not severe. However, he still experiences a number of tics and has learnt to suppress them, especially when he is in new environments or in situations with people who he doesn’t really know.

He explained that stress, anxiety, or tension tend to make the condition worse, whilst relaxation tends to ease the symptoms. “The kind of tics I have tend to vary over a period of time. Therefore, one month I might exhibit tics related to the movement of the head, another month I might exhibit involuntary noises.”

Having a tic is hard to control, but not impossible. Steven explained that this is dependent on how much the person is able to suppress the tic. Some manage, but others don’t, as it tends to be a personal matter.

“The strong urge before a tic can be very well compared to the feeling you get before needing to sneeze. If I had to suppress a total of 20 tics in an hour, in the next hour I would have to do the 20 tics I missed, plus the other usual 20 tics,” he said.

 

Society has become much more accepting of others

Asked whether he tends to feel the need to pre-empt an action, especially with people who he doesn’t know, he explained that if he’s working with a colleague on a project which might take a long period to complete, he usually informs his colleague about his syndrome.

“I believe that nowadays, society has become much more accepting of others, including accepting of conditions like Tourettes. Based on this belief, I encourage many others with Tourettes to never give up and do their utmost to succeed in life,” Steven said.

He added that the only problem with this condition is not that it affects people who have it negatively, but the problem is the lack of awareness to help people who might not even know they have the condition, not even know what it is, or not even know how to handle it well. “There is no cure for Tourettes but the opportunity to seek assistance or guidance on how to cope in your life with the syndrome should be made more available.”

“Going to a psychologist and telling them you are experiencing a number of tics is not enough. Although they might be able to help on a mental level, not knowing what you have can be overwhelming and nerve-racking,” Steven said.

Over time Steven has found ways of calming himself down and suppressing his tics without heavy use of medication. Strategies such as listening to music and eating food such as banana or dark chocolate, which provide magnesium, are very helpful.

He described himself as being a very optimistic and determined person and highlighted that it is due to his character that he managed to live ‘a normal life’.

 

Certain life problems cannot be fixed, similar to how Tourettes is incurable

“I tend to always see the optimistic side of life and I believe that Tourettes has truly helped me overcome obstacles that I have faced in life. The condition has also taught me to accept the fact that certain problems cannot be fixed, the same way Tourette syndrome cannot be cured,” he said.

“The problem with the condition together with the lack of support is deemed an issue when it is experienced by a person who might not be determined and optimistic as I am. People like this would need more support, help and that extra push… support which is not given or easily available in Malta.”

Steven recalled an experience when, at around 18 years of age, his syndrome intensified greatly. He was given medication and although the doctor tried to give him something to help him calm down, it in turn caused negative effects such as being violent with friends.

“From my personal experience, I have realised that I do not want medication to calm me down because I felt that I lost control when using it and felt that I couldn’t continue living my life the way I wanted to. When people with Tourettes find themselves in a similar situation and only focus on finding guidance on how to live their life, that help is not provided in Malta. Parents of children with Tourette syndrome are not able to find any help from anywhere and this is the problem.

For other conditions such as ADHD or Autism one can find organisations which provide support to others, however in Malta not much is done about Tourettes,” he said.

Steven appealed to everyone who might believe that they have Tourettes to visit a neurologist. In addition, a person who has this condition should never give up or hold back from living life to the full as it does not affect the quality of life in a negative way.

“I was a person who always wanted to work in the media industry, and I did. I am a business owner of a media company; I am also married and have a five-year-old son. Society does not have a problem with accepting people with this syndrome, or any other syndrome for that matter. In life you will always find people who will accept you for who you are and others who won’t, but that does not mean one should give up.

I strongly urge everyone to never give up regardless of what one has. Tourettes won’t stop you, so pursue your goals,” Steven said.