Editor and Founder Vrinda Pendred discusses the news, negativity, and OCD

I think we can all agree that it’s been a pretty crazy year – a year that the news / media have recorded meticulously, one way or another, to ensure that we can’t get away from what’s happening. As someone with OCD, I have found this especially hard – but not as hard as some others will have found it, and that is what I’d like to talk about this month.

Bad News

When I was a child, from a very young age my English teachers would make us read local newspapers, cut out articles of interest and paste these into our notebooks. Then we had to annotate the articles and present them as ‘news broadcasts’ for the rest of our class. I found one such notebook in the loft, a few years back. Every article had the date included, so I could calculate how old I was. At the age of eight, I was reading about lethal injection, politicians having illicit affairs, and mothers killing their children. I like to think we can all agree that this was wholly inappropriate reading material for a class of eight-year-olds. And yet it was a standard part of the curriculum at the time – and we repeated the exercise every year until I was fourteen.

As I grew older, these news stories affected me more and more. I tried to minimise the damage by focusing on the Weather section, but all these stories were about people losing their homes or lives to natural disasters. I finally told my mother what was going on (I wish I’d thought to tell her sooner!) and she rang the school to have me excused from these ‘current events’ tasks. I was the only student who didn’t participate. I felt ‘outside’, like a ‘weirdo’…for not wanting to discuss rape and murder at the tender age of thirteen.

By this age, I was already aware that the only news that ever seems to get reported is bad news – very, very bad news. And nothing has made that clearer to me than this last year. I’m not saying that COVID-19 isn’t real. I don’t want to get political about the subject, whatever your views might be. What I am saying is that we need to think about the way such things are reported – and how those reports affect us, especially if we already struggle with anxiety.

Fear Sells

In the earliest months of COVID-19, I recall that every time I walked past the giant TV in the Reception waiting room at my office, all I would see was a death count ticker emblazoned across the screen. I’m sorry to say that the way many people reported it or discussed it online, it felt as if people were almost excited to see just how bad things could get – like it was a thrill to be part of something that big, that historical. And the mainstream media feed off that feeling. It’s how they make their money. Fear became a pandemic in itself.

For the first time in history, constant hand-washing and use of sanitiser was suddenly government guidance – a rule, even, if you wanted to enter a supermarket or go to school. And setting aside any public debates over the necessity of such rules, I couldn’t help but think: what of all the people officially diagnosed with OCD who had spent years on medication or in therapy to try to train themselves out of such behaviour? I can only imagine how confusing this last year must have been for those people.

It is my opinion that no matter how bad things get, the media should not be allowed to make money off of stirring up people’s deepest fears. Even if there are things we need to know for our own safety, I don’t see how broadcasting a live, up-to-date rising death count helps anyone. It doesn’t protect anyone from viral transmission. It simply puts people into a state of distress (which, by the way, weakens the immune system). And for those of us who live in a fairly constant state of anxiety anyway, that distress is magnified that much more.

But this fear mongering didn’t begin with COVID-19. To give a personal example, after my first son was born it seemed that every single news headline was about babies and toddlers dying in horrific ways. It had probably always been like that, but I didn’t notice it until it became relevant to my life. It hit me that this is what all parents have to face every day – headlines like that. It’s awful for anyone, but as someone with OCD, I lack the ability to filter it out. I can’t stop myself from visualising it, almost living these headlines in vivid detail. I dwell on them. I experience the stories as if they have happened to me. And I don’t just forget them a few days later. To this day, I still remember the worst of these headlines going right back to when I was seven years old. I dwell on them.

Now that my eldest is a teenager, I can’t seem to escape stories of knife crime, school shootings, suicide, self-harm, drug abuse, and so forth. It is all around me. Apart from Greta Thunberg’s climate change speech in 2019, I’m at a loss to think of any inspiring, optimistic headline news about teenagers at any point during my lifetime. In mainstream media, teenagers continue to be presented like characters out of The Outsiders (or, in the world of YA fiction, as unrealistic superheroes).

Shutting Out the Darkness

For me, the solution has been to ignore the news. I haven’t watched it in about fifteen years. I don’t listen to it on the radio, if I can help it. I don’t really read it. On the rare occasion that I do, I have my news settings adjusted so that I only hear about major political events – which also aren’t happy, but at least I don’t tend to have murder and death shoved in my face from all directions.

I don’t want to fill my head with darkness and negativity. I don’t want to come away hating or fearing my fellow man. I don’t want to go to bed at night and be kept up with visions of all the horrible things that could happen to me or my loved ones. I want to be aware of anything truly important and relevant, but I don’t want to spend my days too scared to leave my house, convinced that just about anything could kill me.

If you have OCD, you may be just like me. If you have a loved one with OCD, please be mindful of what they might be going through – especially at a time like now, after a year in and out of lockdown and being told that it’s vital to our survival that we all behave in ways we were previously told were signs of mental illness. Believe me: it’s not easy.

Final Thoughts

Again, I am not trying to be political about this. My focus is simply on the news, and how the constant negativity and fear we are sold isn’t good for anyone – but it is especially difficult if you have OCD.

Interestingly, if you do a search for ‘happy news’, the results are still pretty dark – someone risking their life to save someone from a terrifying scenario, or finding a new antibiotic to try to combat a fatal disease that could be caught at any moment. Literally every ‘happy’ or ‘uplifting’ headline I can find essentially boils down to: ‘Here’s something good that came out of an otherwise depressing / terrifying situation.’

I suppose I’m not helping anything by complaining here…! But consider this a call to action: let’s all try to get away from the darkness. Instead of, ‘That’s good, despite how awful things are,’ let’s just find some genuinely great stories to share, and spread some joy and positivity around the world! In fact, why not share one right now, in the comments box at the bottom of this article? And please remember to subscribe to this blog so you don’t miss any future articles.

And finally, if you’d really like to get into the mind of someone with OCD and learn what it’s like to live with – and try to overcome – not just this condition but fear in general, please read my novel Equilibria:

Anna Nolon is obsessive – about everything. She worries about her grades, her appearance, germs, the pattern of her footsteps, the number of syllables in the words she says, her parents’ approval, the future and, most of all, death. It’s okay – so does everyone else. This is Equilibria: the first society built to accommodate OCD. But when Aaron comes along – the strange new boy who doesn’t quite fit into that pristine society of Holy Balance and Order – Anna is forced to look at the dark shadows hanging over her and decide if perfection is really what she wants.

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 been diagnosed with 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, the YA sci-fi /fantasy series called The Wisdom, and Equilibria, a YA dystopia about a society engineered for people living with OCD.

Last time, we talked about what it’s like to have OCD as a child, and some ways to recognise if your child has it. At the end of that article, I mentioned that there are medical causes of OCD, but that I think the specific obsessions we develop stem from life experiences and emotional problems. A huge part of my recovery from OCD was intense self-reflection and identification of the roots of each one of my obsessions – and that’s what we’re going to talk about this month.

OCD Origins

It is generally accepted that to have OCD, there needs to be some kind of medical / biological predisposition to it. All the evidence points to it being an inherited genetic trait, and this is definitely the case within my family. However, my personal theory is that these inherited traits could lie relatively dormant unless triggered / activated by certain experiences in life.

To give a very personal example, I have mentioned in previous articles my former fears of hands coming at me through walls or from under my bed, and a man appearing in my room with an axe raised to strike me. For years, I lived with the conviction that someone was following me, hunting me, and that there was no escape from him. It hit me in my 20s that I knew exactly who this ‘man’ was – actually, not a man at all, but a boy not much older than me, who abused me when I was very small. Up to that point, I had sincerely believed that series of experiences no longer affected me. It was a revelation for me, to see that I had been carrying them with me for so long, in an abstracted way.

Figuring this out was extremely empowering, because it meant I could put a name and a face on my previously faceless pursuer. And that meant I could reason with myself, ‘That was years ago. I don’t know him anymore. And to do what he did, at the age that he did it, he had to have been abused himself. That means he’s not scary or dangerous – he was a victim too, and the whole story is very sad.’ I could feel sorry for both my childhood self and that lost little boy I once knew – and begin to put it behind me.

Similarly, I have spoken about my obsession with keeping things straight and in order, needing perfectly even handwriting strokes, and so forth. In short, it was a need for control. I even tried to control my friends – what they did and what they said. It wasn’t because I’m a controlling person, although people definitely thought I was – I remember being called ‘bossy’ for years. I was too young and insecure to explain what was really going on. In fact, I found it all exhausting, and I frequently chose to be alone: socialising just felt like too much work. Sometimes it still does.

So why did I do it? Because my home environment felt so out of control. I would liken it to anorexia – it’s a way of getting control over something, when everything else feels out of your hands. No one actually wants to stop eating; they desperately need to feel like just one thing in life is theirs, even if everything else is spiralling and sweeping them away. In my case, I grew up in a household of domestic violence. All my ‘bossy’ and neurotic behaviour was my way of holding things together when I felt like everything around me was falling apart and there was nothing I could do about it.

Being exposed to violence at a very young age also meant that I never had that childhood sense of invincibility. I always knew my time on this planet was finite and one day I – and everyone I knew – would die. This was another source of terror for me, namely because, again, it’s completely beyond my control. It is unknowable and unstoppable. I can’t stand feeling helpless, and I often feel a need to save people: I think part of what scares me about death is that I can’t save anyone from it. To cope with these fears, I hoarded – useless items, photographs, videos, music, memories (diaries, letters, etc.). A few years ago, our external hard drive broke and I lost 7 years’ worth of home videos. I went through a very sincere period of grief akin to what I felt when someone I loved died.

But It’s Not All About Trauma

You might be reading this and thinking all of these are extreme examples – surely not everyone with OCD has lived through abuse and domestic violence! And that’s true. I have a number of friends with OCD, some whom I’ve known since we were small. (I think there’s a certain personality type that goes along with anxiety disorders, and it’s common for us to be drawn to each other without quite knowing why.) I recall one of them, in particular, didn’t really display any signs of OCD until we went to high school. She found herself in such a new environment, a small fish in a big sea of new, complex social interactions and intense demands from school itself. She started drowning under the stress and overwhelm and she began coping with it via compulsions. I have heard many others share stories like this, so I think it’s pretty common.

What Does All This Mean for Me?

If you have OCD yourself, try to strip away the compulsions and look at what lies beneath all those coping mechanisms. What are you really afraid of? What’s the source of it all?

Will this immediately ‘cure’ you of your OCD? No. But in my experience, it is the first step to self-empowerment – to understanding what’s really going on, gaining greater self-awareness, and beginning to be able to look all those old fears in the face and accept that probably a lot of them no longer have a place in your life; you’ve just got used to them, over the years. And that means you can begin to let them go.

If your compulsions stem from problems that are happening right now – well, I’d say that identifying those underlying fears and worries could help you think of ways to get out of those situations, or at least give yourself a break from it, to ease the strain.

In the same way, if you’re a parent of a child with OCD and the compulsions seem to go through the roof whenever your child has a growth spurt or during adolescence – give yourself, and your child, a break. I suspect a lot of it is a reaction to a time in their life when everything feels out of their hands. Part of the solution is, without a doubt, to look for ways you can help ensure that their environment is as stable, controlled, predictable and supportive as possible. Then take things a step further: get creative and think of simple, healthy ways you can give your child greater control over their lives. It could be as simple as giving them more choice in what they eat at meal times.

To give another personal example, our youngest (currently four years old) doesn’t have OCD (at least, there are no signs yet), but he absolutely refused to eat anything we gave him at meal times. I had come to dread these times of day, as I knew it would be a battle and involve a lot of screaming and tears. (All he wanted to eat was cheese.) We tolerated it when he was smaller, but at four he really needed to start eating better, especially if he is due to start school later this year. So I came up with the idea to let him look through the cutlery drawer and choose his fork / spoon. It hit me that maybe if we gave him this little bit of control, he would feel more comfortable giving up control over what food he ate – and it worked. It can still be a challenge sometimes, but on the whole, he’s very good at meal times and takes great pride in choosing that fork / spoon. Hopefully, by the time he goes to school, he’ll be conditioned enough into eating a variety of food that he won’t be bothered by them inevitably not letting him choose his cutlery…!

Final Thoughts

The takeaway, here, is that our obsessions and compulsions can start out small and then spiral in a big way, until they take over our lives, even when the original source of those obsessions has been gone from our lives for years. We condition ourselves over time to respond in certain ways, even when we know it’s not good for us – and I think all of it boils down to trying to get something under control, when everything around us feels so out of control.

Peeling back the layers and examining those sources can help us see what inspired the obsessions. Facing them head on can help us overcome them. That is the first step in reconditioning ourselves. Our brains are amazing things, and we can continue to train them all through life. It is never hopeless.

Thank you so much for joining me again, this month, as we continue our exploration of OCD. Be sure to subscribe to this blog so you don’t miss any future articles.

And finally, if you’d really like to get into the mind of someone with OCD and learn what it’s like to live with – and try to overcome – not just this condition but fear in general, please read my novel Equilibria:

Anna Nolon is obsessive – about everything. She worries about her grades, her appearance, germs, the pattern of her footsteps, the number of syllables in the words she says, her parents’ approval, the future and, most of all, death. It’s okay – so does everyone else. This is Equilibria: the first society built to accommodate OCD. But when Aaron comes along – the strange new boy who doesn’t quite fit into that pristine society of Holy Balance and Order – Anna is forced to look at the dark shadows hanging over her and decide if perfection is really what she wants.

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 been diagnosed with 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, the YA sci-fi /fantasy series called The Wisdom, and Equilibria, a YA dystopia about a society engineered for people living with OCD.

Welcome back! Last time, we talked about what OCD really is, versus the media stereotypes, and I promised we’d spend the coming months exploring this subject further. This time, we’ll be looking at what it’s like to have OCD as a child, and some ways to recognise if your child has it. Rather than attempt to give an exhaustive list of things your child might do, I thought I’d share some of my personal experiences. Remember: every child is unique and will have his/her own unique obsessions and compulsions. That said, when I was in my 20s I started talking to others with OCD and realised we had a lot of childhood experiences in common – things you don’t typically hear about in OCD documentaries, so you might not realise they’re part of the disorder.

My Earliest OCD Memories

My OCD may have started younger, but my first memories of it are from when I was around 6 or 7. I decided the ‘correct’ way to walk was in a left-right pattern, which meant that when I stopped walking, I had to finish on my right foot. If I was stopped on my left foot, it felt so wrong. It is impossible to describe the sensation to anyone who hasn’t felt it for themselves. It was genuine distress – not just emotional or psychological but physical, too. It was almost as if I had bugs crawling all over me and I had to get them off. I was overtaken with a combination of terror, deepening dread, and physical revulsion. I’d attempt to fix things by taking a step with my right foot – but it was unnatural, an unnecessary step taken while standing in place. My brain knew the step was forced, and so it didn’t feel like ‘enough’. I would then stamp my right foot over and over until I felt a sort of ‘click’ in my brain that allowed me to relax again. I had cleared the bugs from my skin, so to speak. There was no way for me to explain any of this to those around me, not even my parents. Believe me, I tried, but I could see the confusion on their faces, hear it in their voices, and I recall growing frustrated to the point of anger – not with them but with myself for so obviously being ‘weird’ in a way that others just didn’t get, and having no way to explain myself to them.

Hoarding

Also around 6 or 7, I hoarded like crazy. For example, I saved every single empty toilet paper tube and any other cardboard I could find, in a big paper bag in my wardrobe. I liked to glue and tape them together to build telescopes and binoculars. It’s a standard childhood activity, except my collection grew a bit extreme. I couldn’t throw any cardboard away. One day, my mother found my collection and threw it out. It took me years to forgive her for that. It wasn’t really about the cardboard – it was the emotional distress it caused me to see it go.

When I was 9, I had moved onto other types of paper – namely, homework assignments. I went through a phase where I resented a certain teacher so much that I went on a homework striking and repeatedly told her I’d lost the worksheets. She would give me new ones (looking back on this, although I had good reason not to like her, she was also immensely patient with me, tolerating those excuses and giving me new copies of the work), and I would throw them in my wardrobe. Some years later, I found them all, still in there – hundreds of sheets of paper I didn’t need, and to throw them out even long after the incident felt somehow wrong.

Hoarding can also be invisible. I have been hoarding memories since I was about 7, when I got my very first diary. For years, I felt compelled to document every last detail of each day of my life. I don’t know just how many diaries I filled up, but they are still in my loft, taking up multiple large cardboard boxes. (I often consider typing them up, in case something happens to the originals.) By the time I was in high school, it felt like there was just so much to document that I didn’t have the time or energy for it anymore. I was overwhelmed and frequently missed days or even whole months. This was a source of great anxiety and distress for me for many years, as I thought of how many memories I had let slip by without being recorded. See, I was convinced one day I’d get in some terrible accident and get amnesia, and that my diaries would be my only link to who I was. I was terrified that my identity might be lost forever. (This also tied in tightly with an intense fear of death.) My mother once asked, ‘What if you forgot you had a diary?’ which didn’t help. I considered leaving myself reminders about this, too, to tackle every possible eventuality. (Incidentally, things like Alzheimer’s petrify me too. I suppose that’s scary to everyone, but I recognise that to worry about it as much as I do, at 37, is a little extreme.)

Similarly, I used to keep logs of things like…every time I cried and how many minutes it went on…my favourite song for each day, with the date…every film I’d ever seen and how many times I’d seen it, and so on. (It is still hard to explain to people why I know I’ve seen Aladdin more than 80 times. The only reason that figure isn’t precise is that I made a conscious effort to stop counting after 66. I can’t tell you how hard that was. I imagine it’s all a little like quitting cigarettes – no exaggeration.)

I also continue to have an obsession with taking photographs. I got my first camera with my own allowance money when I was 9 and I just never stopped. When my external hard drive broke a few years ago and I lost 7 years’ worth of home videos, I experienced a period of grief that was identical to the grief I felt when a loved one passed away. Bear in mind that it’s never just about the lost videos, for example. After some deep contemplation, I came to see that particular incident was about me being forced to face my own mortality (we’ll explore this idea in a future article).

Monsters Under the Bed

I think all children go through periods of fearing the dark, or worrying there’s a monster under the bed. But I never knew anyone who had any of this as bad as I did. Sometimes I still struggle with it. In some ways, I think my children are more together than I am.

For years, I felt a presence following me around the house, trying to get me. (Occasionally, I still sense it watching me from the bottom of the stairs, if I get up in the middle of the night.) I would run into my room and shut and lock the door to get away. I would check that lock over and over and over and over and over again before I was convinced I was safely hidden away. (In fact, I did this in the daytime, too. I kept my door locked every time I went into my bedroom, for no real reason at all other than that it gave me comfort.) Keep in mind that the obsession was the worry that I was being followed. The compulsion was me running and hiding, and checking that lock. It’s important to keep these distinctions clear. In retrospect, I can see that every time I ran and hid, I was feeding the fear and allowing it to grow bigger. I was making the problem worse.

But when you’re 8 years old, you don’t understand this, and I’m not sure what amount of reasoning would have got that message through to me – particularly because even once hidden in my room, I didn’t feel safe. Somehow he (it was always a he) would suddenly be in my room with me. Maybe he could walk through walls – or maybe he was waiting for me in the room, all along. Remember, this was the obsession. The compulsion (the action I took to feel better) was to hide in my bed. Then he was under the bed, waiting to grab me, so I couldn’t let any part of my body dangle over the edge. I also couldn’t let my ears show – I don’t know why, but it was imperative that I keep the blanket over my ears or he would get me. (I didn’t stop doing this until I was in my 20s. To this day, the act of sleeping without the blanket over my ear feels like a tremendous feat of daring.) I had to sleep with my back to the wall, so that I could face the room and see him there, and be better able to dodge and run. I used to plan my escape, so I’d know exactly how to get away when he came at me with the axe I was certain he held. All of these scenes ran through my head in meticulous detail, as if it were really happening to me. I frequently opened my eyes to check for him. All of this meant it took me ages to get to sleep. (Tourette’s didn’t help!)

I also obsessively prayed that no harm would come to me or any of my loved ones. I never felt these prayers were precise enough or covered enough people, so they would get longer and more detailed every night, until again it just kept me up for ages. I’d have to do this in my head at sleepovers – I couldn’t just not do it. I felt responsible for everyone’s lives. If I missed those prayers for just one night, someone would die and it would be all my fault.

Wide Open Space

When I was around 9 or 10, I started having showers, and this became a new source of distress for me. I had an almost physical sense that someone was about to grab me from behind. I’d turn in circles to make sure I could see what was coming and run before I got caught. Even when I could see I was absolutely alone in that shower, I feared hands would burst through the shower walls and get me anyway. I’d wash and get out and run from the bathroom as quickly as possible. Similarly, I couldn’t bear being in an open field. Again, I thought someone would get me from behind. For the same reason, I couldn’t sit in an aisle seat, such as in a cinema. In exams, they separated the desks to prevent cheating and there was so much space around me that I couldn’t focus on the test. My mother had to speak to my teachers, to allow me to sit the test in another environment. (I remember my extremely understanding maths teacher Mr Wittevrongel allowing me to do the test in his adjoining office, with him standing in the doorway to make sure I wasn’t cheating. The clutter of his office gave me immense comfort.)

Media Influence

When I was 7, I saw a documentary about tornados and was convinced they were a very real danger to me (despite living in Arizona at the time, where they are extremely rare and don’t do much damage). I had endless nightmares about them (there were usually several tornados all coming for me at once). This went behind normal childhood fear. I visualised intensely and ran over my survival plan over and over again in my head, night after night after night. I knew exactly which items I would take with me in the event of evacuation, and where I would go to hide from the storm. I kept those chosen belongings next to me in bed every night. This ritual continued for years.

I also saw a bit of Unsolved Mysteries around that time (why I was allowed to watch this at age 7, I will never know!) where they talked about a 9-year-old girl who had gone home with a stranger and been discovered in pieces in his fridge. This continues to haunt me today as a mother. Naturally, this would scare any child, but I took it several steps further, involuntarily imagining myself as that little girl, going through every single moment of it in vivid detail – and not just once, but multiple times a day, every single day for an incredibly long time. It’s good to be wary of strangers, but I was terrified of talking to just about anyone.

Self-Harm and Other Coping Strategies

There are lots of ways to hurt oneself. I never slashed my wrists, but I still pick at scabs, and it used to be much worse. I have a deep scar on the left side of my nose due to picking too many times at one particular scab. Thankfully, no one can see it, but it took me many years to come to terms with the fact that I had done that to myself and that it was permanent. (Cue yet another period of coming to terms with my own mortality…!) I also would twist my hair around my finger until it turned into a knot, and then yank it out of my head. This falls into the category of ‘stimming’, a common feature of autism, but it also crosses over with OCD, because I did it to relieve myself of intense anxiety. My bedroom floor used to be covered in knots of my hair (well, sort of – I hid them under a big rug, out of shame). It’s a good thing my hair has always grown so quickly, or I would have been bald (which does happen to people with the same compulsion – it’s a common one). I also constantly picked (and still pick) at my fingernails and cuticles. It really goes way beyond normal nail biting (I managed to quit that years ago). I can’t go anywhere without nail clippers and a file, because the slightest crack or jagged edge gives me so much anxiety and physical discomfort that I can’t focus on anything else until I deal with the problem. It’s not vanity – it’s horrible.

I also spent a lot of time straightening out my books so they were all even, organising them in height order, things like that. In school, my handwriting needed to be in perfect even strokes. I hated pens (compared to pencils) because there would be breaks in the strokes, and then I had to press really hard to fill in the gaps, to make that ‘click’ in my head. Then the letters would look uneven in depth of colour and I just couldn’t stand it. When I was 11, I earned myself the ‘friendly nickname’ of Psycho Woman because I spent a lot of class time frantically erasing the tiny pencil marks left on my desk from when we switched classrooms and someone else used my desk. Then the eraser marks would show up whiter than the natural grain of the wood, and I’d spent yet more time rubbing at it with my fingers to make the colouring even.

Social Life

Other students would draw on my desk on purpose, right in front of me, to laugh at my response. That might sound like bullying, but I don’t hold it against those kids. They weren’t really doing anything anyone would typically class as hostile. They thought I was being silly and it was all a game. I played up to this image by over-dramatising my reactions and laughing along with the other kids. I didn’t want to admit just how serious it was for me, because by that age I was old enough to know something was very wrong and what I was doing was not ‘normal’. I sincerely believe that if I had taken the time to explain to those kids what I was going through, and shown them just how much pain it actually caused me, they would have backed off (even if they also thought, ‘God, she’s weird!’). Perhaps when they grew up and became more aware of the world and things like OCD, they remembered me and realised what had really been going on…or maybe not. As I said last time, OCD is very misunderstood. (And maybe they don’t remember me at all – always possible!)

At least I didn’t lose any friends because of that behaviour – but OCD still impacted my social life, mainly because of how controlling I was. Other people just didn’t understand that pencil marks on a desk represented a life or death situation. They didn’t understand how imperative it was that we carry out certain rituals, to ensure that some indefinable disaster didn’t occur. I had no choice, as a child, but to force these things on them. They had to do things my way. Not only that, but controlling them meant I didn’t have to deal with any kind of unpredictable behaviour. I often ran through imaginary conversations in my head, even, and then couldn’t stand when others didn’t follow the script I’d written for them. Often it was easiest just to stay on my own so that I didn’t have to worry about what others did. I didn’t like being bossy. I didn’t like being in control – it was exhausting. I just didn’t know what else to do. So for a long time I preferred to play on my own, away from people.

Final Thoughts

There is so much else I could mention. OCD simply consumed me, until I was in my late 20s. I fed that monster everything I could, letting it grow and grow and grow until it was hard to find me amid that devouring fear. Where did it all come from? There are the medical causes, of course, but I think the obsessions we develop actually stem from life experiences and emotional problems. A huge part of my recovery from OCD was intense self-reflection and identification of the roots of each one of my obsessions – which we’ll talk about next time. Be sure to subscribe to this blog so you don’t miss any of these articles.

And finally, if you’d really like to get into the mind of someone with OCD and learn what it’s like to live with – and try to overcome – not just this condition but fear in general, please read my novel Equilibria:

Anna Nolon is obsessive – about everything. She worries about her grades, her appearance, germs, the pattern of her footsteps, the number of syllables in the words she says, her parents’ approval, the future and, most of all, death. It’s okay – so does everyone else. This is Equilibria: the first society built to accommodate OCD. But when Aaron comes along – the strange new boy who doesn’t quite fit into that pristine society of Holy Balance and Order – Anna is forced to look at the dark shadows hanging over her and decide if perfection is really what she wants.

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 been diagnosed with 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, the YA sci-fi /fantasy series called The Wisdom, and Equilibria, a YA dystopia about a society engineered for people living with OCD.

Editor and Founder Vrinda Pendred discusses what OCD really is, the key categories of obsessions / compulsions, and identifying the roots of your obsessions

Following on from our series on Tourette’s Syndrome, now we’re going to look at a related condition that often comes alongside Tourette’s, or you can have it all on its own: OCD.

OCD is another one of these very misunderstood conditions. TV shows like Hoarders: Buried Alive show just one side of the disorder. In my opinion, they’re exploitative and don’t inspire sincere sympathy. People watch them for their shock value. In reality, you likely wouldn’t know if someone had OCD. We’re not all buried alive under mountains of rubbish (although that could happen). Most obsessions aren’t so visible – and that means they’re not as widely publicised. In fact, even people with OCD may not realise they have it.

So, now that we’ve established what OCD isn’t, lets talk about what it is. To do this, we’ll break down the name of the condition. OCD means:

O – You have obsessions. This doesn’t mean you’re obsessed with trains or some celebrity. It means you fixate on things that – and this is the crucial distinction – make you suffer in some way. We’ll go through some examples later in this article.

C – It’s not enough just to have obsessions. To be diagnosed with OCD, you need to have compulsions, too. This doesn’t mean you compulsively lie or steal things or eat chocolate or spend too much money. It refers to any actions you undertake in order to cope with the discomfort arising from the obsessions.

D – It is a disorder. I want to emphasise this because so often we hear someone say, ‘I’m OCD about cleaning,’ (as if ‘OCD’ is a verb) or, ‘I’m really OCD about taking care of my books.’ That is not OCD. It is a preference, not a source of distress. OCD means it causes you to suffer in some way.

So, let’s go through some examples. Please don’t imagine this is an exhaustive list, because it isn’t at all. It’s just a sampling of common categories of obsessions someone with OCD (maybe even you) might struggle with.

Violence

What you’ll soon see is that the obsessions basically amount to dark thoughts (although I don’t think that term quite does them justice). Naturally, a common theme of dark thoughts is violence. For instance, for decades I couldn’t use any kind of even slightly sharp knife because every time I went anywhere near one, I would have the most intense, detailed visions of using the knife to slice open my arms, chop off my fingers, stab myself, stab others – you name it. Obviously I was never going to do any of these things! Hence the compulsion, which was to avoid knives altogether. The visions were so real and overwhelming that I didn’t trust myself. I had to do something to stop myself, or at least stop the upsetting visions my imagination brought to life for me.

Death

This leads us onto the subject of death. I still struggle near train tracks, because I can’t seem to help imagining throwing myself onto them. I see every brutal detail: the moment of realising what I’ve done, the panic on seeing an oncoming train, the knowledge that there’s no time to get away, the feeling train hitting me (and visions of it from third-party perspectives), being smashed or maybe severed, how quickly I’ll die or perhaps bleeding in agony until I finally die off…. Fun, yes? I’ll let you work out how long it took me to bring myself to go anywhere near the edge of a train platform.

Home was not a safe haven. For years I could only sleep on my left side, stemming from a long time when sleeping on my left meant my back was to the wall, allowing me to face the openness of my room. That meant I would see when the faceless man appeared, the one with the axe, who I was convinced would come for me in the night. And let’s not forget my terror of hands punching through the walls to grab me in the shower. This wasn’t simple fear. I dealt with the fear by developing self-soothing strategies, like counting (which, over the years, became an obsession in itself and wreaked another kind of havoc in my life).

Death, in general, has also plagued me from time to time. In my second year of university, I didn’t sleep for five straight days because of all the visions that hit me every time I was alone in the dark without distractions from my thoughts. The exhaustion resulted in me missing lessons and getting a zero on a key paper (which, thankfully, I was allowed to redo). My own mind was my worst enemy and I didn’t know how to make anyone understand or how to help it. In fact, when my teacher wondered why I had missed all the relevant lessons, I lied because I couldn’t bring myself to admit what was going on. It just sounded so stupid, and I didn’t expect anyone to take me seriously.

Cleaning

Alongside hoarding, I think this is the most common OCD stereotype. Yes, it is a common manifestation of OCD but not everyone does it. I never have, for instance – but I do understand it. It’s important to see that the cleaning is not the obsession: it’s the compulsion. The obsession is a fear of germs or illness, a conviction that one has contracted a deadly disease and is going to die or pass it on to others. In a way, it’s another death obsession. So if you like your kitchen in neat order, that is not OCD – you just take pride in your home.

Religion

Religious obsessions are a very common manifestation of OCD. Many people imagine they might break the fundamental rules of their religion, or simply disrespect the religious service by shouting out. They have thoughts that might be deemed sinful and then feel guilty, worrying God has heard them and they will be punished. They might act out any manner of compulsion to counteract this. I have never experience this kind of obsession myself, despite being raised religious. However, I did use intensive prayer to combat other obsessions – for example, my conviction that my loved ones or I would die in the night. For at least a decade, I was convinced one of us wouldn’t wake up the next morning.

Sex / The Body

Basically, if there’s anything at all to feel embarrassed or guilty about, it’s a potential obsession. Sex is a key part of this, and it can get particularly wrapped up with religious beliefs / obsessions. There may also be bodily obsessions, such as the feeling that you’re going to take off your clothes in front of work colleagues or inside a church. The general population might have a passing thought like this, but for someone with OCD the vision feels so real that it could actually lead to self-imposed hermitage.

Hoarding / Spartanism

Just as cleaning isn’t really the obsession, hoarding isn’t either. It’s the compulsion, to counteract the obsession, which I think comes down to feeling out of control. Speaking personally, I have lived through periods of hoarding (particularly as a child) and a lot of it came down to fears of amnesia – and why did that matter? Because I felt like time and life were slipping away from me and everything was beyond my control. Collecting things was a way of holding onto something, preserving it, giving it a kind of eternal life.

The inversion is spartanism, which refers to obsessively getting rid of things. I’m not sure this is precisely the same, but I have experienced this to a degree, as well. For example, when the shampoo bottle starts running low, I feel physically anxious about the fact that it’s nearly gone but not quite, every day until it’s fully empty. I feel tempted to throw it away just to get rid of the anxiety, even if there’s still some shampoo in the bottle. Some people take this to greater extremes and feel like they need to get rid of everything they own. I still believe this must be the compulsion, not the underlying obsession.

Superstitions / Magical Thinking

This is sort of a catch-all ‘miscellaneous’ category. I remember as a child being told that old schoolyard rhyme: ‘Step on a crack, break your mama’s back.’ As soon as I heard this, I knew it was just a silly song…but part of me had to ask: what if I was wrong? I didn’t want that kind of responsibility on my shoulders, so to be safe, I spent years walking with my head facing down. Looking back, all of these things – avoiding pavement cracks, straightening stacks of books, not sitting in the aisle seat in a cinema, and so many other compulsions – were ways of getting control over my life and environment when I felt otherwise powerless.

The Roots of OCD

The medical causes of OCD are similar to those I’ve discussed for Tourette’s Syndrome (as are the medications, e.g. SSRIs). That said, my own experience has taught me that although the propensity towards OCD is genetic, the form your OCD takes is unique to you. Your own life experiences are what shape your individual obsessions. I spent years examining mine and this is part of what helped me overcome them – identifying the lingering monsters, accepting that they were gone, and then consistently reminding myself that I didn’t need those coping strategies anymore. This is easier said than done – as I say, I spent years doing this and sometimes the obsessions can still hit me. We’ll talk about this more in later articles.

The important point to take away from all this is that OCD is not hoarding or hand-washing – it’s a portfolio of coping strategies for when life knocks you around. Medication can help, but it isn’t a lifelong solution because it doesn’t teach you how to cope better with the challenges in your life. And no one can tell you to just stop doing these things because it isn’t really about the aversion to knives, the counting, the hoarding, the cleaning, and so forth – it’s about the fears that underlie these things. It’s about how out of control you feel over your own life and environment. The only way to overcome that is to find healthier ways to start feeling in control – and that’s hard.

Final Thoughts

Over the next series of articles, we’ll be looking at OCD from different angles – what it’s like to be a child with OCD, how it can change as you move into adolescence, holding down jobs or relationships when you have OCD (or being in a relationship with someone with OCD), the impact of pregnancy and childbirth on a woman with OCD (and the impact of fatherhood on a man with OCD), the influence of the wider world around us (like the news and social media), and positive steps we can take to try to get control of OCD. Be sure to subscribe to this blog so you don’t miss any of these articles.

And finally, if you’d really like to get into the mind of someone with OCD and learn what it’s like to live with – and try to overcome – not just this condition but fear in general, please read my novel Equilibria:

Anna Nolon is obsessive – about everything. She worries about her grades, her appearance, germs, the pattern of her footsteps, the number of syllables in the words she says, her parents’ approval, the future and, most of all, death. It’s okay – so does everyone else. This is Equilibria: the first society built to accommodate OCD. But when Aaron comes along – the strange new boy who doesn’t quite fit into that pristine society of Holy Balance and Order – Anna is forced to look at the dark shadows hanging over her and decide if perfection is really what she wants.

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 been diagnosed with 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, the YA sci-fi /fantasy series called The Wisdom, and Equilibria, a YA dystopia about a society engineered for people living with OCD.

Editor and Founder Vrinda Pendred discusses taking a more positive approach to Tourette’s Syndrome

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, being a parent with Tourette’s and being a woman with Tourette’s. If you missed any of these articles, please click one of the links above to read them.

and making friends. If you missed any of these articles, please click one of the links above to read them.

At last, we have reached the end of this series, and I’d like to conclude by stressing the importance of taking a more optimistic look at having Tourette’s Syndrome.

Exploitation of the Media

When I see TV programmes about Tourette’s, they are always dramatic presentations of ‘sufferers’ on the brink of suicide, unable to function in their daily lives. Perhaps they punch themselves in the throats every few seconds, or swear and shout racial slurs over and over. I used to watch them, when I was in my late teens, still trying to figure myself out. I don’t watch them anymore. Why? They’re depressing. Worse still – they’re exploitative. TV largely makes its money by tapping into people’s voyeuristic tendencies. People love to be shocked, disgusted, horrified. I think it’s our way of consoling ourselves that all the terrible stuff happens to ‘other people’, to imagine we’re safe – like why we watch horror films. Misery sells, so TV producers go out of their way to deliver it to us.

The truth that such programmes don’t tell you is that most people with Tourette’s find ways to function in society. I say this as someone with quite a severe case of it. The last time I bothered to count my tics, I had over 40 different ones, bleeding into each other, connecting in painful, lengthening sequences. More have developed since then, but I no longer count them all. It’s not a competition. I am fortunate that I don’t swear uncontrollably or say any other such obscenities against my will. My vocal tics are more chirping and echolalia (though I suppose that could change, one day – they evolve all the time). However, on a physical level, I live in constant pain. There are many things my tics prevent me from doing. Parts of my body (my left arm, in particular) are permanently weakened / damaged. And I’m currently 37 – supposedly we’re meant to outgrow the tics in adulthood, but mine got worse. And yet I still function. I’m happily married with two children, plenty of close friends, my own home, and a really good career.

And I’m not the only one. I mentioned in the previous article that I went through a period of attending meet-ups with other Tourettics. One such gathering ended with dinner at a popular restaurant in Central London (where you see all kinds of people). One of our group that night is well-known in the UK Tourette’s ‘scene’. She runs her own organisation for helping kids with Tourette’s, got a book published (endorsed by Stephen Fry), and has been interviewed in mainstream newspapers and on TV. She has the swearing tics, and has learned to embrace and laugh about them.Another member of our group was featured in a documentary on Channel 4. Another recently won the first heat in a battle of the bands, with a chance to win the grand prize of playing at the annual Bloodstock metal festival up in Whitby. (Sadly, COVID-19 lockdowns put that to a grinding halt.)

Every one of us in that room was fully functional. It didn’t matter how severe the tics – we all had good lives. We were all what I would call ‘normal’. And after a while, I didn’t even notice the swearing, because the conversation was good and the laughs kept coming. I reckon other people would have the same experience if they gave such people a chance. And if more people gave others that chance, I think you’d see fewer people sobbing on the brink of suicide, unable to leave their house for fear of public abuse.

Because I know that fear does exist. I know because that same evening, the restaurant staff moved us to a private table in the basement room, away from the other diners. I kind of get it. If there were children, you wouldn’t want them hearing random obscenities, even if they weren’t intentionally spoken. Still, the experience of blatant, undisguised segregation really hit me. Little did the restaurant know they were sending a minor celebrity to eat in the basement!

But looked at another way: we got a private room and could be as noisy as we liked! And this is my point. My personal experience is that these days most people with Tourette’s learn how to live with it. We’re a remarkably resilient, adaptable lot. I think it’s one of these things, like trauma, where it either makes or breaks you. In my case, and in the case of many others I have met or spoken to online, it certainly did not break me.

Elegant Variation

If you look online, you can find all manner of studies suggesting that people with Tourette’s have impaired cognitive functioning compared to ‘healthy’ control subjects. (What does that even mean? I ask.) I don’t buy this. My son and I have both been invited to sit the official test for membership in MENSA. On the other hand, I have heard some people with Tourette’s complain that they’ve heard suggestions that the condition is linked with higher IQ and yet they feel pretty average, or maybe they’re even struggling in school.

There are also plenty of suggestions that Tourettics tend to be highly creative. I think there must be some truth in this, as everyone I’ve ever met with Tourette’s fits this stereotype – writers, musicians, artists, and so forth. However, I’m sure there are Tourettics out there who would find this stereotype frustrating, if they aren’t personally very creative – and, of course, there are plenty of creative people out there who don’t have Tourette’s!

Tourette’s is also one of these things that can make a person deeply introverted, hiding themselves away for fear of judgment. For others, the phrase ‘if you can’t hide it, decorate it’ seems to apply – they integrate their tics into their daily mannerisms and are extroverted as can be. Some of us even learn to laugh about our tics – for instance, there are plenty of tweets and social media comment threads full of people sharing their most hilarious shouted-out expletives.

What does all this tell us? That people with Tourette’s are as varied as people without Tourette’s. All that said, I do think Tourette’s comes with (or leads to) a certain personality profile. I don’t mean we’re all the same. I mean having Tourette’s shapes each of us as individuals. My unique chemical makeup affects more than my motor movements; it affects my emotional responses, how I think, who I believe I am. And now that I’m an adult, the experience of having Tourette’s has played a key role in shaping how I think, feel and react.

Final Thoughts

The medical world is determined to find a cure for Tourette’s. Worryingly, I’ve even heard talk of locating the Tourette’s gene – something that could only lead to things like Tourette’s tests on developing foetuses, and genetic modifications to remove the gene. Eradicating what is perceived as disability can be dressed up in any fancy language you like, but it’s still eugenics. I would not be who I am today without Tourette’s. If we found a cure tomorrow, I would not take it – because I like who I am, and that ‘cure’ would kill the person writing this article. Likewise, there is no way to know just how much we might change the whole of society if we were to isolate and eradicate the Tourette’s gene for all time.

There are those out there who will disagree – who would absolutely take that imaginary cure. That’s fine. Like I say: we’re a varied lot. And don’t get me wrong: there are some people out there genuinely on the brink of suicide because of their condition. But television programmes showing only the bleakest, darkest side of Tourette’s help no one. They don’t teach the world what Tourette’s is really like. They don’t encourage parents coming to terms with their child’s diagnosis. And they certainly don’t help that child accept their situation and themselves.

It’s time to start showing more people who have integrated Tourette’s into their lives and been just as successful as their non-Tourettic peers – because there are loads of us. Tourette’s doesn’t have to be a disability. For some, it may be. For most, it can be lived with. I don’t say that as a detached doctor or a parent who has watched it all from the outside. I say it as someone who’s done it.

At long last, we’ve reached the end of this series! As we come to the end of what has been an incredibly strange year (2020), I want to wish you all well and best wishes for a significantly better 2021. Be sure to subscribe to this blog so you don’t miss any future articles.

And 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.

Editor and Founder Vrinda Pendred discusses the highs and lows of making friends when you have Tourette’s Syndrome

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, being a parent with Tourette’s and being a woman with Tourette’s. If you missed any of these articles, please click one of the links above to read them.

This month, I want to spend some time talking about making friends when you have Tourette’s Syndrome.

Being the Only Tourettic in the Village

When I was a child, I didn’t know anyone else who had Tourette’s. I felt like that character in all the YA books / shows, who spends all their time pretending to be like the other kids – you know, ‘normal’ – because they fear that when the truth comes out, everyone will look at them differently and reject them. Only, I didn’t have a super power like Buffy the Vampire Slayer or Spiderman. I couldn’t see any way things could ever turn out okay.

As it happens, they did. I’ve said before: my friends didn’t care. They didn’t look at me differently at all. They had hardly even noticed my tics. I had built it up into a teen drama in my head, but it wasn’t as bad as that – in my case. If I had been the kid who had to do cartwheels all day, or punch himself in the throat repeatedly, or swear constantly…the story would have been different. I can’t begin to imagine how hard that must be – because there are kids out there just like that. They don’t have the luxury of keeping it secret and ‘pretending they’re normal’, like I did.

I’m not sure which is worse. On the face of, I guess you’d say having it out in the open is harder. In many ways, I’m certain it is. But the ones who keep it secret are hiding a fundamental part of who they are and exhaust themselves pretending it isn’t there, terrified of their secret getting out. It’s hard either way.

I grew up in the 1980s/90s, when Tourette’s wasn’t really something people knew about it. There’s still limited understanding of it today, but at least when you say the word, there’s a basic awareness of what you might mean. There was none of that, when I was a kid. There were no charitable organisations or Facebook groups arranging meet-ups. There was no real way for me to meet anyone else who faced the same challenges I did. I was just that lone weirdo at school or jerked around, blinked too much, and chirped.

If I’d known other kids with Tourette’s, I think that would have made a huge difference to my upbringing. I don’t believe your only friends should be others with the same diagnosis. However, knowing even one other child, my own age, who could relate to what I was going through likely would have helped me feel less weird, more able to talk about it, and more acceptant of myself. At the very least, there would have been someone to open up to when it all felt like too much – someone who knew exactly what I meant.

Searching for ‘People Like Me’

In my 20s, we had this magical thing I never had as a young child: the Internet. This was when social media as we now know it was only really just getting off the ground, so outlets were limited. However, I managed to find online forums for adults with Tourette’s.

With some trepidation, I signed myself up to attend a meet-up. My husband came with me for moral support. I was terrified, the way I always had been about meeting new people (I’ve since got over that fear, but it was severely debilitating when I was younger). About half the attendees were parents with children with a diagnosis, while the other half were like me – adults who had been diagnosed as children, or maybe in later life, but had never known anyone else who ticced.

That day was eye-opening. You probably expect me to say it made me feel like I belonged, at last – but it didn’t. In fact, what hit me most was how different we all were: that having Tourette’s didn’t unite us the way I had dreamed it might.

I came away from that meet-up feeling like maybe it was me. As I say, I was so bad at socialising, back then. I had obviously done something wrong, not made the most of the experience – something. So a few years later, I attended further meet-ups. This was around the same time that I joined a social media site for OCD and met others suffering with the same kinds of anxieties I always had, not to mention the same kinds of mood swings / depressive phases.

That was a crucial turning point for me. It was a time to indulge in all my worst thoughts, and all my worst feelings about myself. I realised I had been carrying so much ‘clutter’ inside me, and I needed to throw it all on the floor, pick through it, decide what to keep and what to throw away forever.

When I’d finished, I realised I didn’t want to be stuck in that place anymore. I didn’t want OCD or depression or Tourette’s to define me. For the first time in my life, it sank in that I wasn’t any of these things – I was Vrinda. And Vrinda is not the same as everyone else out there with a diagnosis.

I Already Had Friends

In time, it dawned on me that I didn’t need to find friends ‘like me’ – because I already had them. They didn’t have Tourette’s, but they were still more like me than anyone I had met who did. After all, does everyone who has diabetes feel an instant connection with each other? Of course not. They can share certain experiences, but that doesn’t guarantee they a lifelong bond.

Tourette’s can feel like such a huge part of your life that it’s easy to believe it must form a key part of your identity. And I guess in a way it does. I’m certain I wouldn’t be the same person if I hadn’t grown up with such a condition – and I’m wary of what it might do to me if someone magically found a cure tomorrow. I don’t think I’d take that cure. I put a lot of hard work into learning to love myself, and I don’t care to undo that.

But Tourette’s isn’t who I am – it’s something I have. And learning the difference is what made me feel settled in my skin at long last.

Final Thoughts

Yes, it’s important to meet others with Tourette’s, so that you don’t feel alone while you’re unpacking the experience, particularly when you’re first coming to terms with your diagnosis – no matter how long that may take.

But Tourette’s doesn’t need to be the centre of your life. You are so much more than your tics. We all are. So after you’ve unpacked everything, the way I did, it is so important to remember to look for all the other things that make up who you are and let them anchor you in the world beyond Tourette’s.

Next time, we’ll be talking about taking a more positive approach to having Tourette’s. Please be sure to subscribe to this blog so you don’t miss out.

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.

Editor and Founder Vrinda Pendred discusses what it’s like to be a woman with Tourette’s Syndrome, riding the hormonal roller coaster

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, and being a parent with Tourette’s Syndrome. If you missed any of these articles, please click one of the links above to read them.

Today, I’ll be talking about what it’s like to be a woman with Tourette’s. As you’ll see in this article, this is a subject that does not get nearly as much attention as it deserves. As a woman myself, I think the neurological / medical community needs to put much more work and energy into this area to improve understanding and support. For now, the most I can offer is a starting piece to get the conversation going.

Monthly Cycles

I have previous explained how dopamine is a key component in learning, memory, concentration, mood stability and motor control. Too little dopamine and you can become moody, unfocused, unsettled, depressed, disinterested in life or, in extreme cases, catatonic. I have also discussed how dopamine goes hand in hand with serotonin, which plays a key role in mood regulation, emotions, sleep and appetite. Low serotonin levels are linked with eating disorders, loneliness, depression and self-harm – not to mention insomnia, panic attacks, anxiety, obesity, OCD, digestive problems and pain. This is especially hard on girls, as serotonin and dopamine are closely linked with oestrogen, which rises and falls every month, right through to menopause.

During a typical menstrual cycle, oestrogen levels rise twice and fall twice: they rise in the build-up to ovulation, then drop off sharply before rising again a few days later, and falling once more in the lead to menstruation. Alongside this, progesterone levels skyrocket after ovulation and then drop off just as dramatically after the egg is released. Speaking from personal experience, this means females with Tourette’s can experience periods of sharp mental acuity, good sleep, healthy appetite, feelings of confidence, and more settled bodies, including relatively minimal tics…alternated with periods of restlessness, insomnia, self-doubt, irregular appetite, and more dramatic tics. Bear in mind this is during a typical cycle. If you have irregular periods due to other underlying medical conditions (or simply stress, which is increasingly common today), the hormonal roller coaster can feel more extreme.

This can be especially hard during adolescence, when you’re trying to work out who you are but identity seems to be fluid; and you’re trying to come to terms with your medical condition, but the severity of your tics seems to change every week. Even now, at 37, I still feel this. I’ve just been on that ride so long that I’ve accepted it – but at 17, it was hard to take. It means I have spent years investigating the myriad ‘solutions’ on the market to address hormonal fluctuations, including oestrogen cream. However, when you read other women’s personal stories (and I believe it is so important to do this), it is quickly apparent that there is no ‘right’ level of oestrogen for all women. It entirely depends upon your individual body chemistry: what helps one woman could have disastrous results for another. I have never personally found a ‘solution’ I have felt comfortable with.

Contraception

I believe it is fair to say that most sexually active women today (in the Western world) will use some form of contraception, most of which are hormonal. Typically, they work by flooding the body with synthetic oestrogen and / or progesterone, to prevent conception. As you can imagine, this will impact upon conditions such as Tourette’s.

If low levels of dopamine and serotonin are connected with Tourette’s, we might predict that such contraception reduces symptoms – although, on the other end of the spectrum, too much dopamine is linked to paranoia, suspicion, aggression, wild mood swings and social withdrawal (symptoms of schizophrenia) – as well as OCD and ADHD. Again, it likely depends upon the individual.

Unfortunately, when conducting a search for this information today, there is absolutely nothing out there. As I said at the beginning of this article, this is a sorely under-investigated subject, and if any neurologists are reading this article, I humbly request that you please consider undertaking such a study, as data is badly needed.

As an aside, the non-hormonal copper coil (intra-uterine device) should not, on the face of it, impact natural oestrogen / neurotransmitter levels. Instead of introducing artificial hormones, the presence of copper in the uterus thickens the uterine wall, which interferes with the movement of sperm and therefore prevents conception. However, this thickening can cause the body to respond hormonally (for example, the coil is known to cause heavy periods – I once woke up so soaked in blood that it had somehow reached head level and drenched my pillow), which means for some women this could interact with tics (not to speak of other biological processes). Again, there appears to be no meaningful published research into this, to date.

Pregnancy

This is an interesting area, as oestrogen levels rise dramatically during the first trimester of pregnancy, and then gradually continue to rise right to the end. Such elevated hormonal levels must then drop off after the birth. If we consider that reduced oestrogen is connected with lower levels of dopamine and serotonin, it is unsurprising that so many women struggle with postpartum depression and anxiety (and this is before we even consider the hard physical work the woman has just undertaken, and the work she must continue doing now that the baby is born).

Again, there is just not enough research into this area, in relation to Tourette’s. However, I can share anecdotal evidence: with both my boys, my tics seemed to vanish by the end of each pregnancy, and they returned in full force after the birth (worse than they had been since I was a teenager, even) – along with extreme OCD and low mood. This was compounded by my time spent breastfeeding, as oestrogen levels are generally lower while feeding. I know some women take to pregnancy and breastfeeding like a duck to water, but this was not me. I found that whole time indescribably difficult and only truly enjoyed motherhood once breastfeeding was behind me. There were times during the first few months of my sons’ lives when I had to hand them over to my husband because I was in danger of pressing in the babies’ skulls with my finger tics. As I discussed in the previous article, this had emotional repercussions, as well as physical. With my second child, I was mentally prepared for this. With the first, I had no warning, no frame of reference, and it was devastating and terrifying.

Menopause

I have long had a great fear of menopause – purely due to my medical conditions. The whole point of menopause is a gradual and permanent reduction of oestrogen and progesterone. It does not happen in one steady fall, rather in stages, until eventually your hormone levels flatline and should never rise again.

We all have rather unflattering, unsupportive ideas of menopausal women – of them being moody, irrational, forgetful, and so on. In many ways, it can replicate symptoms of ADHD. Again, there is a frightful lack of research into the interaction between menopause and Tourette’s. A quick online search predominantly brings you to women’s personal blogs about the experience, but this too is limited. However, we can make an educated guess that tics must worsen (or perhaps rise and fall and rise and fall again) during this time. My hope is that by the time one’s hormonal levels stabilise, so too do the tics.

I would be deeply interested to hear other women’s experiences with this. However, even as recently as my own childhood, Tourette’s was a largely misunderstood condition with a low diagnosis rate, which leads me to guess that we might not hear such stories until my own generation goes through the menopause ourselves and we begin to speak out.

Online searches do produce results of some women enquiring about the use of HRT (hormone replacement therapy) to treat fluctuating tics during menopause. However, there are many potential side effects of HRT, and so this unlikely to be a solution for all.

Final Thoughts

As warned, I’m afraid I haven’t provided much in the way of hard answers. The purpose of this article is mainly to open up discussion on a much-ignored subject that I feel quite passionately about.

I also invite everyone to be supportive and understanding of the girls / women in their lives who are struggling with Tourette’s. Hormonal changes are a fact of life. There is no getting away from them. Perhaps all we can do is remember what our daughter / sister / wife / friend is going through, be there if she wants to speak about it, and support her through it – the way I would hope we would do for anyone with Tourette’s, but acknowledging that for females, that waxing and waning can present itself still more dramatically.

Next time, we’ll be talking about making friends when you have Tourette’s – particularly, the pros and cons of finding other people who have Tourette’s themselves. Please be sure to subscribe to this blog so you don’t miss out.

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.

Editor and Founder Vrinda Pendred discusses what it’s like to be a parent with Tourette’s Syndrome – especially when your child inherits the condition

As promised, my goal tracker app shot up an alert this morning to say it was blogging time, and here I am!

So far in this series, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, and how Tourette’s affects self-esteem. If you missed any of these articles, please click one of the links above to read them.

Today, I’ll be talking about what it’s like to be a parent with Tourette’s Syndrome – especially when your child develops tics / Tourette’s themselves.

Birth and Infancy

This is a bit of a heart-breaking subject, for me, which I have to break in two parts. I’ll start with the birth of our eldest son, back in 2006. I was just 22, going on 23, and my tics were at their peak. They had never been (and never were thereafter) as bad as they were during that time. I expect due to hormones (something we will discuss next time), after the birth all I wanted was to be unconscious to escape the living hell in which I now found myself.

Every time I tried to hold my beautiful new baby, my hands seized up, consumed by a terrible electric need to press my fingers as hard as I could into my baby’s body – often his head, I think precisely because it was the softest, most fragile and important part of this new developing creature over which I suddenly had so much power.

There was an element of OCD in this, too. It is extremely common for new mothers to develop symptoms of post-partum Obsessive-Compulsive Disorder. The sheer thought of how responsible you now are for someone’s whole being can lead to some awful thoughts. Fears of hurting the baby can quickly morph into visions of actually doing the very things that would hurt him, and those visions can be so intense that you might worry you’re actually going to do manifest them.

Naturally, you never would. That’s why the visions are so frightening and terrible, maybe even sickening – because they conflict so strongly with your sense of ethics and love for the child. But fear and logic have never been good friends. Fear is a bully that beats logic out of the schoolyard, and before you know it, you’re in a state of perhaps physical panic at the thought that you might actually want to harm your baby. Worse still, you’re terrified to admit this to anyone, out of yet more fears, this time that someone will decide you’re unfit to be a mother and take your baby from you (which I’m sure used to happen before we understood as much as we do today about psychology). All of this means it is common to suffer in silence.

I went through this with both my children. Thankfully, I was educated enough on the subject to understand what was happening and know this did not make me an unfit parent. Unfortunately, Tourette’s is not as easy to control, although it often seems to have similar triggers to OCD. I didn’t just have visions of hurting my son – my hands would feel a physical craving to press and squeeze him in ways that really would hurt him.

I tried to do it gently enough that it would feel affectionate. But my brain didn’t accept that. I had to find other objects to press (so hard that my fingers went white) as a substitute, but even that didn’t feel right. It got so bad that I often had to hand my son over to my now-husband because I didn’t feel able to handle our baby safely. I can’t adequately express the depression that came over me in having to accept that sometimes I just couldn’t hold my new son.

The Toddler Years / Second Child

All of this passed once our son was older and sturdier, more solid and less fragile. It also wasn’t quite so bad with the second child, born when I was 33. My tics had settled much more by that age and my body was not subject to quite the same hormonal fluctuations I experienced when I was younger. I’m not sure if this is 100% down to age, or if it’s also because I changed my entire diet and lifestyle over the years. For example, I cut out all cow milk about two years before our youngest was born, which I’m certain had an effect of some kind.

The OCD was just as bad with both boys, regardless of my age, although it got better as they grew more independent. Even so, this lasted many years, and I would advise any parent in my position to avoid the news if they’re struggling with this kind of thing. As soon as you have a baby, it seems all the headlines are about the horrors that can come to small children. Some still haunt me 14 years on.

With both our children, there has been a sad sense of wishing their younger years away because I found them so hard to cope with. I don’t feel I have ever been able to enjoy the pregnancy / new parent experience in quite the same way as many other new mothers – but I’m sure many other women would say the same, even without Tourette’s. Much of that may simply come down to modern life and cultural pressures making us feel we’re failing to meet expectations. Even so, Tourette’s and OCD added a fear factor no other mother I know is able to relate to.

When Your Child Develops Tourette’s Himself

Statistically, most children start showing symptoms of Tourette’s between the ages of 5 and 9. For example, I was diagnosed at 7, and showed signs of it much earlier. So, imagine my shock when our eldest son began ticcing for the first time at the age of 10.

I confess I had that age statistic in the back my mind pretty much since our son’s birth. Part of me watched him like a hawk for any sign that he might have inherited my condition. When he turned 10, I was very openly relieved he had apparently escaped my personal fate. Then, some months later, I saw his first tics – and I denied them. I rationalised them with other possible explanations, because I couldn’t accept what I was seeing. Finally, he broached the subject, as they were causing him a great deal of discomfort, and I could deny it no longer.

I went through the grief process all over again, but this time over my child. I had got used to living with it and that had somehow become okay. To watch my son go through it was another thing. I couldn’t stand the idea that he was saddled with this incurable condition that I knew would impact every aspect of his life, cause him pain, and potentially prevent him from doing many things he formerly loved.

So much worse was the idea that I had done it to him – I had passed it on. I felt inundated with a deluge of guilt that would not abate. I spent a long time begging (whom I don’t know) for it to pass, just for him – for it to be a temporary response to stress, perhaps. I pleaded for it not to get any worse than it was. I felt furious (with whom or what, again I don’t know) that this had happened to my child. I kept thinking my beautiful boy was now marred by this awful thing and there was nothing I could do to stop it from happening. I went through a similar experience when he briefly needed eyeglasses (another thing I felt I had passed onto him). I couldn’t stand the thought of putting something over his beautiful face. It all felt so wrong. I was utterly powerless to protect him from the cruelty of genetics.

As it happens, I think the tics were largely brought on (or at least worsened) by stress. He was going through an extremely difficult time, in school and in life, with his Year 6 SATS coming up and a new brother on the way. When he moved up to secondary school later that year, his tics got worse still. Over time, he was placed on ADHD medication for about 9 months and they made the tics unbearable; he could hardly function. We took him off the medication and the tics seemed to settle. These days (touch wood), I forget he even has Tourette’s. I have sometimes wondered if it simply vanished, but occasionally he will mention that the tics are giving him a hard time, so I guess it’s still there. Even so, he’s nothing like I was at his age, so I guess someone listened to my pleas after all.

As I write this, his brother is 3 years old. This time around, I have forgotten to watch out for things like tics. I’ve learned the value of just letting life play out as it will. Otherwise, I’ll waste these years in a state of stress and anxiety, rather than cherishing this brief moment of time while I have it.

‘He’s so lucky to have you as his mother!’

With our eldest, I have lost count of how many times people have said to me, ‘He’s so lucky to have you as his mother. You’ve been through it yourself, so you know what he’s going through.’ I always tell them: actually, I don’t know. Sure, there are some things I can relate to, and my awareness is a definite advantage, as it means he never has to live in confusion about what’s happening to him; and I can step in to provide more education for some of his teachers or other parents, if there’s a problem. But as he loves to remind me, he is not me, and we are on very different paths. Despite my own diagnosis, in many ways I am just as clueless and helpless as my own parents were with me.

I have tried to encourage him to blog about it – to share his own experiences and get the information out there to everyone, while letting out the frustrations he feels at the same time. He did this for a time but didn’t keep it up. I believe he keeps a personal journal, which serves the same purpose. He might decide to speak up about it more when he’s older. The school often tell us stories about him stepping in to support and mentor other children struggling with stress or unhappiness or feelings of not being good enough. I take this to mean he is finding ways to channel his own experiences in a positive way. Whenever he has dealt with bullies or ignorance about his diagnosis, I have encouraged him to tell people openly that he has Tourette’s, and teach them about it. I am a strong believer that knowledge and education is the best defence. Otherwise, I can only do what my parents did for me: let him find his own way.

Final Thoughts

I hope this has article has been helpful in some way. It’s not a topic I’ve seen much written about, and I hope that starts to change. Next time, we’ll be talking about something else I never really see people discuss: what it’s like to be a woman with Tourette’s. The female hormonal system and its interaction with neurotransmitters (and therefore Tourette’s and other related conditions) presents a whole set of additional complications and challenges that boys / men will never have to deal with, and we need to get it out there in the open.

Even if you’re a man, this is an important topic to help you understand your daughter / wife / girlfriend / friend / sister / mother / cousin dealing with the condition, so please be sure to subscribe to this blog so you don’t miss out.

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.

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 30^th 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.

This is a short message to let you know that, unfortunately, trying to operate as an independent publishing imprint has not proved sustainable. Therefore, for a variety of reasons, we have made the decision not to take on further submissions.

We will continue to print copies of our previous publications, but mainly we want to focus on our blog – sharing insights and stories to help support our mission statement. If you have a story to tell, please do get in touch so we can share it here. Remember: you can share your story anonymously, if you wish.

As a final point, we’ve been trying to publish blog articles in topical series. It’s proved tricky (for personal reasons) and has resulted in long gaps between articles. Therefore, we will try to keep things grouped together as much as we can, but we may jump around a little. This is what happens when your founding editor has ADHD!

Thanks for taking the time to read this brief note, and I hope you have a fantastic 2019!

Best wishes,

Vrinda Pendred

Editor & Founder