Editor and Founder Vrinda Pendred discusses how living with Tourette’s Syndrome can impact on self-esteem – especially during adolescence
I need to begin this article with an apology. I began this series whilst on maternity leave in 2017. I returned to work in the second week of January 2018. The last blog article in this series was published on 30th January 2018. Trying to juggle a baby, a teenager, the school system, commuting, a day job in the financial services industry, over a year of intense finance exams, and a personal life (ha!) was challenging and something had to give. Unfortunately, that ‘something’ was blogging. But I’ve downloaded a goal tracker app (to be discussed in a future ADHD article!) and my plan is to publish one article a month. Wish me luck!
So far in this series on Tourette’s Syndrome, we have discussed what Tourette’s is, the causes and triggers, key medications (including anti-depressants), as well as alternative treatments, such as diet and vitamin regimes, and even more extreme measures. We then talked about the grief process and how it relates to Tourette’s, how being diagnosed can be scary, having to deal with bullying and teachers, and surviving adolescence when you have Tourette’s. If you missed any of these articles, please click one of the links above to read them.
As promised over two years ago, this time we will be talking about self-esteem. This is a loaded subject even without medical diagnoses. As a child, if we lack nurturing from our caregivers, this can have lifelong consequences on our development and sense of self. Even if our home environment is loving and supportive, school can be a stomping ground, where peer pressure, bullying and exams hold the potential to damage our confidence. I don’t believe anyone makes it to adulthood without at least a few battle scars, and for some it’s worse than others. For those who have a harder time, they might find ways to heal and move forward, or they might get stuck. The shaping of identity is never straightforward, and the outcome never certain.
My personal path was a hard one, but it ultimately led me to a good place. I underwent many traumatic experiences during the first twenty years of my life, some of which were medical in origin. In a previous article, I talked about a psychotherapist who told me there was nothing wrong with me – I simply needed time to process and overcome the trauma of living with Tourette’s. I have also shared that I was afraid to talk about my diagnoses. Needless to say, this kind of thing affects one’s self-esteem.
Body Image
Teenagers (and many adults) often battle with body image, and I was no exception. For years, I found it almost physically painful to look at myself. I hated mirrors because when I checked my reflection, I would see myself tic and it looked ‘ugly’. I also hated watching myself in home videos. I had less ‘control’ over the tics during adolescence and they were much more extreme than they appear today. I have videos where my head is jerking violently, my eyes are darting and squeezing shut so hard that my whole face is contorted, my nose is twitching, my mouth is pulling from side to side, my head is straining to reach my shoulders – and that’s not to speak of what the rest of my body is doing. But it was my head tics that most upset me. Living with it is not the same as watching yourself do it. When you’re inside your body, doing the ticcing, you can almost forget about it. It might be painful, but after a while it becomes so commonplace to you that you do it without thinking about it. But when you’re forced to see it for yourself, the thought hits you: ‘This is what others see.’
In fact, when I ‘came out’ about it at thirteen (I.e. when I started openly speaking about it with friends for the first time), all my friends told me they hardly noticed it. I may have already said this in a previous article, but one of my best friends in the world said something like, ‘Oh, you mean that little twitch you sometimes do? I’ve always thought that’s just that cute thing Vrinda does.’ Maybe it’s a bit like having an eating disorder: everyone tries to assure you that you look great, but every time you look in the mirror, all you see is fat. For me, everyone tried to assure me that they hardly noticed the tics, but when I was forced to confront myself, I saw a twitching, writhing mess. If I’m being really honest here, I thought I looked ‘like I had mental problems’. I felt like an imposter, pretending to a normal girl, when in fact I was the crazy person you tried to avoid on the street. Having OCD didn’t help these thoughts!
Have you ever visualised yourself and what you might look like? Try it now. Wherever you are, look away from this screen and up at nothing in particular. Try to get a sense of yourself, an idea of your appearance. Examine what you look like, but from the inside out. Then look in a mirror or your phone’s camera feature. Does it match your visualisation? Mine never did. Not even close. It was heartbreaking to think that what others saw was something not real, not really me. I spent years feeling like there was a real person inside, trapped in a body that didn’t reflect the truth within. I tried to console myself with the thought that anyone who truly knew and understood me would see through the surface to the person I visualised myself as – but it was impossible to know for sure. (Remember – OCD!)
This, combined with the eye tics, made it extremely difficult to hold eye contact with anyone. I couldn’t bear the thought of them staring at a face I didn’t want to look at myself. I was forever projecting thoughts onto others, imagining I could read their minds and see myself through their eyes, their perspective – and that perspective was never good.
Dating
As I moved into the arena of dating, this hatred of my face, in particular, gave me new reasons to feel bad about myself. I felt ‘ugly’ and didn’t believe anyone would ever find me attractive. I felt I made up for it with a big personality (although I struggled with insecurities about this, too), but that ultimately no one would ever think I was truly beautiful. It didn’t help that I ripped up my fingernails and pulled out my own hair – not classically ‘feminine’ traits! I have also always found it difficult to hold hands. It triggers my fingers to spasm and press against the other person’s hand. Hugs do this too. There’s no way to hide the tics when they’re digging your fingernails into someone else’s skin. As a teenager, this meant having to explain myself to people, and that meant admitting I was a ‘freak’.
Physical Disability
Then we get into physical ability – or lack thereof. Seven years twirling baton, finally at a competitive level, ended after tics made it impossible to twirl safely. (Tip: Don’t toss a baton in the air and then catch it with your eye – especially whilst wearing contact lenses!) It would have ended anyway, as competitive sports are not for me. But the suddenness of my exit, and the reason for leaving, was upsetting. I recall lying about what had happened. I didn’t want to acknowledge it was tics that had got in the way. I blamed everything on not finding classes fun anymore, when inside I was devastated at the turn of events. Likewise, when breathing tics made swimming impossible, I lied and said I just didn’t feel like swimming anymore – but that was ridiculous. I was made for water.
Confronting Myself
My eldest son (who is now fourteen) was diagnosed with Tourette’s when he was ten. I hope he doesn’t think of himself as ‘ugly’ like I did, but he does find it next to impossible to look at himself in the mirror. I’m not sure if this is due to a simple feeling of awkwardness (staring at yourself can be a strange experience if you’ve not done it much before) or lack of confidence. He’s still too young to explain it fully. All I know is he doesn’t like it.
He has his own battles with self-doubt, like we all do, but I think things are improving. In terms of Tourette’s, he’s one of the lucky ones: his tics have reduced greatly (coming off ADHD medication helped hugely with that). But for some children (like me), that miracle doesn’t come. How do those kids overcome the ‘trauma’ of having Tourette’s and learn to like themselves?
I believe the answer lies in acceptance.
I was also diagnosed with autism. This, combined with years of depression, meant that when I smiled for photographs, the pictures showed me I wasn’t smiling at all. I looked downright miserable and didn’t seem to know how to smile. The canyon between my outward appearance in my inner self seemed to be widening with age and I needed to do something about it before I lost all sense of connection to myself.
So, in my twenties I started practising smiling in the mirror each night before I went to bed. For the first time, I faced myself.
The smiles were forced, in the beginning. I studied them and memorised the feeling of my facial muscles when I truly smiled, so I could replicate it without the mirror one day. Over time, the smiles became real. I grew used to greeting myself and bidding myself goodnight. I became familiar with my face and I accepted it. At some point, that face became my image of my self.
The vital point is that rather than turning away and denying the tics, I stayed with them and watched them happen. I allowed myself to think all the hateful things I thought about them, and I stuck with them, night after night after night. After a while, it got boring. The tics were just tics. They weren’t ugly anymore: they were what they were.
You Are Not Alone
Just as important, I made an effort to meet others who had Tourette’s. For the first time, I watched others who were like me and realised I wasn’t some lone freak. And if I didn’t think other were ugly for it, and I didn’t think they looked crazy, why would anyone think that about me? Maybe some will – but those types of people probably aren’t anyone I would like to know, so why should I care what they think? It was time to stop assuming the thoughts of others and start listening to all the nice things they actually said.
Regaining Confidence
My adolescent fear was wrong: I married someone who has called me ‘beautiful’ many times. We now have two beautiful children, and people say they look like me, so that must also say something about me. I have a successful career, proving I am capable of quite a lot, after all. At work, a colleague recently commented that he had never noticed me tic – ever – and he has known me over thirteen years. I am actually still ravaged by tics, but again, I must see them more than others do, and I have finally accepted that. I can also watch myself in home videos (even ones from my teenage years, when the tics were visibly at their worst), because I now know Tourette’s does not define me – it’s just that cute thing Vrinda sometimes does.
Just last month, one of my oldest and closest friends (an ex-boyfriend from high school, in fact) told me I’ve become prettier with age. He said it isn’t anything physical – it’s something about how I now carry myself. I found my inner spark. As a child, I think I had that spark, but I lost sight of it as a teenager. Feeling disabled and ‘freakish’ made it hard to see all the things I could do and be. But literally facing myself time and time again, and learning to accept my limitations and oddities, helped me see those positives again. These days, I still end my nights smiling at myself – but it’s no longer a test. I just think it’s important to smile at your friends before you say goodbye for the day.
I can’t tell you how to find that inner spark, or how to help your child find it. Everyone has to find their own way back to themselves. But what I can say is that the only way to heal from any trauma is to look it in the face and accept it as a fact of your life. How you take that step, and what you do afterwards, is down to you.
Next time, I’ll be talking about what it’s like to be a parent when you have Tourette’s – whether your child has Tourette’s or not. Please be sure to subscribe to this blog so you don’t miss out – my goal tracker app says I will be publishing the article next month!
Finally, if you’d like to read a 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
Until next time….
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.
