Editor & Founder of Conditional Publications, Vrinda Pendred, explains what Tourette’s Syndrome really is, as someone diagnosed with the condition herself.
This is the first in a series of articles I will be writing about Tourette’s Syndrome. A quick Internet search will provide you with dozens of clinical articles defining and attempting to describe the condition. I don’t wish for this to be one more such article. I want to give an insider’s view, as someone who has been dealing with the condition since I was 7 years old.
The Basics
First, the generic information you might have already read, in your search for an understanding of this complex condition:
- Tourette’s Syndrome is named for Gilles de la Tourette, a French physician who made the first diagnosis in 1885, although it is believed that many people including Mozart suffered with the condition long before it was recognised by the medical world.
- It’s described as a ‘syndrome’ because it can only be identified by its symptoms – namely ‘tics’, from the French word for These tics can be either ‘motor’ or ‘vocal’.
- Many people might have one or more simple tics without having Tourette’s Syndrome. To receive a diagnosis, you have to exhibit a combination of both motor and vocal tics, they need to ‘wax and wane’ (if one fades, another replaces it), and they need to occur over the longer term, in multiple environments. For example, a child who developed a motor tic under stressful conditions within a particular class at school, but who exhibited no other symptoms outside that environment, would not be diagnosed with Tourette’s Syndrome.
Motor tics are involuntary movements, including muscle spasms, hitting oneself, grabbing, jerking, pressing, eye blinking, facial movements, cartwheels, or even mimicking others’ movements, gestures and facial expressions (referred to as echopraxia).
Vocal tics are involuntary sounds, including coughing, throat clearing, repeating other people’s words or the sounds at the ends of words (referred to as echolalia), and – in a small minority of cases – uttering inappropriate or offensive words or phrases (copralalia).
Copralalia – and indeed coprapraxia (grabbing or touching oneself ‘inappropriately’) – are very rare amongst Tourettics (as I like to call us). Speaking personally, I have never suffered from such tics in the nearly 30 years I have had the condition so far. I have also met several other Tourettics and only one had copralalia.
Something I have rarely seen any medical books mention is what I think of as pressure tics – having to press someone’s hand over and over, very hard, if they try to hold mine – or even having to stare at something or something for a very long time, until I feel like my gaze has pressed into the object ‘enough’. How much is ‘enough’? Just until my mind can relax again.
Medical experts will tell you the strength and frequency of each tic shifts with time. As a rule of thumb, the more stressed, tired or unhealthy you feel, the worse the tics. Sadly, the tics themselves can cause you to feel tired, stressed and unhealthy, which creates a vicious cycle. I can say from experience that tics are also triggered by things that might cause an epileptic seizure – flashing lights, the flickering of the television, too many people rushing past me in a busy crowd.
My mother also pointed out that my tics always got worse when I underwent a growth spurt, such as the onset of puberty or a sudden surge in height. I have noticed this in my own son – something I will discuss in a future article about parenting a child with Tourette’s Syndrome.
Something else to bear in mind is that Tourette’s often coexists with other related conditions, such as OCD, ADHD, autism and mood disorders. These conditions can interact. For example, it is said that if you have both OCD and Tourette’s, you’re more likely to experience violent OCD compulsions such as skin-picking and dark obsessive thoughts – something I can personally attest to.
The Mystery of Tourette’s
What doctors don’t tell you is stuff like when you wake up first thing in the morning, you don’t tic. There is a blissful moment each day when my body ‘forgets’ it has what some doctors suggest is actually a form of brain damage. I am completely at peace; my body is still, my mind is quiet. I get out of bed and go about my morning routine, still in that state of peace. Then the thought will hit me – Hey, I haven’t ticced yet, today – and like lightning, the tics will strike and ravage me with full force, as if to make up for their little lapse.
Also, if I become really focused on something – for instance, if I become utterly absorbed in a good book, or if I concentrate on a task, or even on playing a video game – my tics seem to vanish without my awareness. But as soon as I lose that concentration, they come back.
Yet, bizarrely, you can’t stop it. It’s not like OCD, where it has been proven that you can train yourself to control the compulsions, with time and practice. The more you try to repress a tic, the worse it becomes. It consumes you. No matter how hard you try to distract yourself, all you can think of is the need to perform that tic. A kind of pressure builds in your mind, so powerful that it’s almost physical. And when you finally give in (you always will), it’s not enough to perform that one tic. You have to perform it over and over and over again, with excessive force, to compensate for the initial repression. It explodes out of you like a bomb.
For this reason, I say no medical expert truly knows what Tourette’s is. It’s a mystery, in that it is demonstrably affected by drugs that influence the levels of neurotransmitters in your body, such as dopamine, serotonin and norepinephrine; and it is definitely consciously irrepressible. Yet at the same time, there seems to be a psychological component. To date, no one can explain this.
It’s NOT Just a Children’s Illness
You will also read that many children present symptoms of the condition, but eventually grow out of it, and that it usually affects boys rather than girls. In fact, pretty much every book published on the subject focuses on children, and the predominant pronoun used is he. I find this unhelpful, to parents and Tourettics alike, as there is little support for adults, especially women, struggling with the condition. I say this as an adult woman myself, who once bought into the assurance that I might grow out of my problems. Instead, my tics got worse with age, something I was unprepared for by doctors, when I sought proper help at age 13.
More than that, my tics transformed with time. To demonstrate, I have compiled a very basic tic timeline of my life (this in no way covers all the tics I have experienced over the years):
Age 7 – I was diagnosed with Tourette’s, after several years doing things like shrugging repeatedly and abnormally while watching the TV, and snorting endlessly – a leftover from a strep infection that caused severe sinus issues. (Incidentally, many cases of Tourette’s begin with some form of sinus infection, something I’ll discuss in a future article in this series.)
Age 8 – I earned the nickname ‘bunny’ in school because I couldn’t stop stretching and scrunching my nose. What none of the other kids knew was that this, too, came from sinus issues. My nose got blocked up and I had to blow it so much that it began to bleed. Then the blood clogged my nostrils and I started scratching it out. This resulted in tears in the inner lining of my nose, when then scabbed up, only to be ripped up again. I started stretching down my nose to ‘test’ whether the wounds had healed. In a twisted way, it felt almost good – relieving – when the stretching motion would rip open the wounds. I then scrunched up my nose to counterbalance the feeling of stretching, and to push up my glasses.
Age 11 – I strained the muscles in my left upper-arm so much that I pulled the ligaments out of place and had to wear an arm sling. This happened many more times throughout school. Today, the ligaments are permanently damaged, because they’ve never been allowed to heal. Why? Because I’m physically incapable of stopping the very thing that caused the damage in the first place. As a result, I have a very weak arm and I had to quit things like gymnastics, which I once was quite good at.
Age 12 – I was forced to quit baton lessons, after 7 years and admission into the elite twirling team. This came as a result of my eyes blinking and straining so much that I could no longer see the baton, eventually resulting in an accident that caused lacerations and bruising to my right eye.
Age 13 – I gave up on the idea of ever wearing contact lenses, because my eye darting and blinking meant the lenses kept falling out. True swimming also became impossible, due to a heavy exhalation tic, and my reading speed slowed due to eye tics. Piano and typing became a challenge, as I couldn’t stop pressing random keys, and so hard that I hurt my fingers. This was when I decided it was time to learn just what Tourette’s really was, as no one had given us much information when I was initially diagnosed, and the tics had got so bad that I’d had to quit just about every extracurricular activity I’d ever tried. For this reason, I asked my parents to take me to see a neurologist for treatment.
Ages 14-17 – I trialled multiple medications intended to treat the condition, which transpired to be more trouble than they were worth (to be discussed in a future article in this series). My neurologist openly admitted he was essentially experimenting on me, as treatment for the condition was still very new (and, I’d argue, it still is today).
Age 22 – I noticed my tics were no longer isolated events, but now triggered each other and formed sequences. These sequences often began with the straining and spasming in my left shoulder. For instance, this would cause my forearm to flex and strain, which would affect my fingers and make them go briefly rigid (I’m naturally double-jointed in my fingers). Simultaneously, my right shoulder blade would strain and twist, causing my back to twist, which would eventually make my legs strain and jerk. Similarly, the eye blinking would somehow trigger my head to jerk and therefore my jaw to clench, and back again.
Age 23 – The above sequences became more prolonged, and my body would become ‘frozen’ in unnatural positions. For example, when my fingers clenched in their double-jointed position, they would stay that way for several seconds before releasing. This limited my mobility and ability to perform simple tasks. Worst of all, this occurred just as I gave birth to my first child. The tics grew so extreme that I often could not hold my baby, as there was a very real danger that I might squeeze his soft undeveloped head and hurt him. As an aside, my vocal tics got so bad that there were days at a time when I could not speak, because my throat was too busy making useless sounds.
The Three Classes of Motor Tics
It was at this time that I decided to do further research into my problem, and I discovered that motor tics are broken down into three categories:
- Tonic – Simple isolated movements
- Clonic – Complex series of movements
- Dystonic – Prolonged ‘freezing’ into unnatural postures
This was terrifying, because I’m all too familiar with the word dystonic. For those who don’t know, dystonia is another neurological condition, in which sections of the body (anything from one finger to the whole left side of your body) freeze in unnatural postures for very prolonged periods. It often affects musicians, such as my father. He was once a phenomenal drummer, and not just on the kit. For instance, when I was very small he had a love for the dumbek, a drum used in Middle Eastern music, which rests on the lap and is played by hand. I could watch his hands fly for hours and not grow tired of it; he was that skilled.
But the repetitive motion of striking his fingers in certain shapes against the edge of the drum skin meant that one day he couldn’t get his fingers out of those shapes. His fingers might freeze in formation for hours at a time, which disabled him from doing just about anything. It was very painful for him, not to mention frustrating. It crippled him – and after years of experimental treatments with botox (it was originally invented to treat dystonia), he had to give up drumming, something that sent him into bouts of depression.
I do not have dystonia, but the temporary frozen postures I developed at age 23 were all too reminiscent of my father’s condition. Thankfully, no one has identified any further ways tics can morph over time. I’ve reached the pinnacle of ticdom, and I’ve never come down.
Assimilation
That said, the more you live with something, the more you grow used to it. These days, most people don’t realise I have Tourette’s. When I tell them, they all say the same thing: ‘It must not be that bad, because I haven’t noticed it.’ Actually, it is that bad. When I last counted the number of different tics I have – motor and vocal – it was somewhere over 40, and new ones develop all the time. But it’s become second-nature to mask it in all my other natural gestures, behaviours and sounds. I used to have to try very hard to cover it up, as a child, but now I no longer have to think about it.
Closing Thoughts
Tourette’s is an incredibly complex condition that cannot yet be fully explained by medical professionals and researchers. Whilst it has been proven to be a physical disorder, there appears to be a mysterious psychological component, albeit this aspect cannot be controlled.
And that really sums up what the condition is about – lack of control. It can be terrifying, as a child, especially if those around you don’t understand. It’s still hard, as an adult, to accept that lack of control over your own body and mind. And, as we’ll discuss in future articles, treatment for the condition is limited and often unsuccessful. That’s not to say there’s no hope for Tourettics. Most days, I forget I’m ticcing. I have learned to live with my limitations and adapt accordingly – and I can still do so many things, despite the tics. It can even be funny, occasionally. For instance, a work colleague once commented that he kept hearing bird noises, and I had to explain it was me, chirping away without realising it. We were both able to laugh about it, with no malice, which made it somehow easier to deal with.
If you’re struggling with Tourette’s, I always say the most important thing is to educate yourself as much as possible, so you can talk about it openly with the people around you. Don’t be ashamed; you can’t help the things you do and/or say. Make sure people understand this, and that you surround yourself with those who accept you for exactly who you are.
If you know someone with Tourette’s, please be there for them. Don’t bring it up too much, because talking about a tic can act as a trigger for the Tourettic and make them feel self-conscious; but if they bring it up first, listen to them and show them support. At all times, treat them like any other person, and help them feel as calm and happy as possible.
Next Time
Next time, we’ll be talking about the possible causes of Tourette’s Syndrome, so be sure to subscribe to this blog to make sure you don’t miss out. Also, if you feel someone else would benefit from reading this week’s article, please feel free to share it.
Finally, if you’d like an even more detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app. US Readers UK Readers
Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.
Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder. In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.
She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladder, inspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.
