Life with Tourette Syndrome as an Indian woman - Manisha’s story

Trigger warning: This blog post contains sensitive content related to suicide and mental health challenges. The content may be distressing or triggering for individuals who have experienced similar struggles or who are currently facing mental health issues. If you are experiencing thoughts of self-harm or suicide, or if you are in crisis, please seek immediate help from a mental health professional, counsellor, or emergency services in your area. You are not alone, and support is available.

As much as I am a movie buff, it makes me very anxious every time I want to watch a movie in a theatre. Because, as the film progresses, so do my tics. And the concerned stranger in the neighbouring seat always makes it a point to check in on me to see if I am choking myself to death.

As always, I explain to them that I am not dying. And that I have Tourette Syndrome which causes my body to twitch and have ‘tics’.

Then my neighbour goes on to tell me about how they had never heard of something like that and ask me why I wouldn’t just “control” my tics because it was distracting to them.

Trust me. If I could, I would.

But I can’t. So, I won’t.

You know why? Because Tourette Syndrome can be very painful and debilitating. The more I try to control or suppress my tics, the worse they get. Would you rather want me to constantly feel pain in my body so you can relax?

Imagine getting bitten by a thousand fire ants all at once and fighting the urge to scratch the bites. That’s exactly what it feels like when trying to suppress a tic.

I could still try to suppress them but that would make me more anxious and stressed, intensifying my tics which eventually wears me out. And tiredness just amplifies the cycle!

And it hurts physically, emotionally, and mentally.

Tourette’s hurts

So, this Tourette’s Awareness Day, observed annually on 7th June, I want to talk about my journey with Tourette’s and how wide-spread awareness of this debilitating condition can go a long way in supporting people like me.

What is Tourette Syndrome?

It is a neurological condition characterised by repetitive, involuntary movements and vocalisations called tics which commonly start during their childhood, around the ages of 6-8 years.

There are different types of tics: vocal tics such as grunting, coughing, sniffing, sighing; simple motor tics like rapid eye blinking, winking; and complex motor tics such as head jerking, neck twisting, shoulder shrugging, and abdominal wall jerking.

And no. It is not contagious. You will not “catch tics” from me if you are seated beside me or involved in any relationship with me.

Some people have tics where they uncontrollably swear, and this condition is known as coprolalia. Unfortunately, whenever Tourette’s was represented in mainstream media, most often, the focus has been on coprolalia even though research states that only 1 in 10 people with Tourette’s have this condition. This has also contributed to creating a negative bias on people with Tourette’s which in turn affects their personal and professional lives.

The cause of Tourette’s is yet to be determined. However, there is plenty of research that suggests that the occurrence of Tourette’s is linked to genetics and pregnancy-related complications. My family believes in the myth that it is past-life karma and/or a generational curse. To each their own.

And I? I honestly couldn’t care less why I have Tourette’s. All that matters to me is what I do with this lived experience.

I had my onset of tics when I was about 6 years old, thanks to a neighbourhood boy who believed I was infatuated with him because I kept winking at him uncontrollably and I had no awareness of that!

My ophthalmologist wrongly attributed my strange behaviour to excessive television-time which then led to my parents taking away the one element of joy in all our lives — the television. But that did not discourage me as I continued to wink uncontrollably at a space that once held the magic box that taught me about the world outside.

It was only in early 2021 that I understood and acknowledged that what I had was not merely a bunch of odd-looking physical movements.

What I had had a name — Tourette syndrome.

Growing up in a country like India where if you do not conform to the conventional standards of normalcy, beautiful or healthy, especially if you are a girl, you are considered an abomination. A burden to the family that chose to bring you into this world.

Although my parents are postgraduates in science and medicine, Tourette’s has always been something of an extraterrestrial phenomenon for them to comprehend. They have always loved me the most and do their best to protect me from the prying eyes of society, in hopes that there will be a cure to this someday.

Here’s the thing – Tourette’s has no cure.

So, I had to do what I did best – masking my tics and letting loose when I was on my own, with arms and legs flailing around like an inflatable tube man, because the people around me found my tics “awkward”. That made things worse. It destroyed my mental health, made me constantly feel like an imposter, and left me feeling that the real me wasn’t worthy of love and acceptance.

The worst of all the evils was that I had no understanding of Tourette’s myself to make sense of why I was the way I was. I believed something was wrong with me and needed to be corrected and gave into the weight of people’s unsolicited advice and remarks that buried me alive.

“Have willpower and you can control it!”

“Don’t let your tics get the better of you. You MUST control it!”

“There is nothing called tics. It is just all in your head!”

“You don’t need therapy. You need an exorcism!”

“You are ugly and demented. No wonder you are seeking attention with your tics!”

“You need to be more religious. God is punishing you for not performing your rituals.”

“Lose weight and your tics will vanish!”

“No one will want you or love you if you have tics.”

From self-proclaimed life coaches to neurologists, I went around trying to find answers but everywhere I went, I hit a dead end.

When my mental health plummeted in 2014, I was recommended to see a psychiatrist who put me on a cocktail of drugs, possibly to numb my brain. Did it help? I don’t think it did because all I could remember was feeling extremely drowsy with my emotions caught in the crossfire of suppressed neuronal activity.

On a fateful day, after a nervous breakdown, I wilfully overdosed myself on the pills. Developed a second-degree heart block, with tubes down my nose pumping activated charcoal. I was hospitalised for a week, being chastised by every other person who assumed to have a right to tell me about how ungrateful and foolish I was in trying to take my life. The tubes down my nose flushed out the toxins along with the last ounce of hope that was hanging by a thread.

Somehow it seemed to have missed everyone’s spectrum of thoughts and judgements that I wasn’t giving up on life because I felt hopeless. Rather, I was crying out in pain loudly, for the world to hear. It was a cry for help. For someone to show me even the tiniest ray of light in a world where darkness seemed to drown me.

In hindsight, I realised that the only person who could save me then and make me the woman that I am today was myself.

But I did not do that alone. I was blessed with an inner circle that accepted me for who I was, loved me, pushed me to be better, and comforted me when the world seemed to be against my existence. It was the faith they had in me that gave me the courage to make the bravest move of my life – moving to the UK.

Why is Tourette Syndrome Awareness important?

Despite the unbearable cold, the lack of sunshine for most months, and the constant struggle to sustain myself financially, I have found my freedom and the strength to be myself in the UK. I tic wherever I want, whenever I need to. It isn’t my tics or my bodily appearance that people here base their perception of me on.

For the first time in my existence, I felt like I could breathe freely. I didn’t have to mask or drain myself at the quest of being someone else. I could be my authentic self.

That got me wondering, why the UK was able to give me what I could never receive from my own family and people. It is because of the higher levels of awareness and efforts at breaking the myths and stigma around Tourette’s in the UK that helped more people to accept and embrace people like me.

In the words of the American actor, Dylan McDermott, “Once you understand that someone has Tourette’s and they can’t help their tics, it takes away the distraction. And you can engage your compassion. You feel for them. You embrace them.”

Let me give you another example.

Lewis Capaldi in an interview talked about his Tourette’s, just a few weeks before his concert in Frankfurt in 2023. At the concert, he started experiencing severe tics and stopped mid-song.

Do you know what the audience did?

No, they did not boo him off the stage.

Instead, the entire audience made a powerful gesture to assist him by singing the rest of the song for him till he could feel better.

That is what happens when there is awareness created around this debilitating condition. I agree not everyone with Tourette’s is a celebrity with a massive fan following. But ensuring that their environment and the people in it are aware of their condition can significantly enhance the life experience of people with Tourette’s.

This also facilitates inclusion and dispels the myths and stigma associated with the condition because 75% of people with Tourette’s say they feel compelled to hide or mask their tics out of the fear of stigma and discrimination.

It’s not just tics. Tourette’s has a number of co-occurring conditions or comorbidities that include attention-deficit hyperactivity disorder (ADHD), obsessive compulsive disorder or behaviours (OCD/B), and autism spectrum disorder (ASD), whereas some of the common coexistent problems include anxiety, depression, substance abuse, eating disorders, difficulty sleeping, sensory processing difficulties, and executive dysfunction. And research states that people with Tourette Syndrome and/or Chronic Tic Disorder show an increased risk of suicidal deaths and attempts.

Despite these challenges that Tourette’s brings, people who live with it are just as amazing as you and me. In all shapes, sizes, moods, and all of their tics.

All they need is someone who has the decency to be humane and empathetic to understand them; to accept them for who they are.

Not everyone has the luxury of having an inner circle to rely on or move to a different country to seek freedom like I did. Not everyone dares to speak up in a society that doesn’t accept you if you are different. And not everyone receives a second chance after trying to take their own life.

And, that is why more people need to know about this debilitating condition so they can open their minds and hearts to accept their own for who they are. Our country shouldn’t be a threat for people like me to live in. It needs to be the nurturing motherland that we pine for.

We owe it to them all – every single soul battling a disability, visible or invisible. Tourette’s or not, if we cannot engage with each other with empathy, we have failed as a race of so-called advanced beings.

Manisha Manoharan (she/her) is an Indian woman living in the UK. She identifies as a Neurofabulous Touretter (have Tourette's, ADHD, anxiety and chronic depression, and potentially on the ASD spectrum)

You can follow Manisha here.