I stir awake to the sound of Mum’s voice. “It’s 11.30am!” she chimes, as my eyes flutter open. But something’s not right. I can’t move a muscle, not even my lips. My heart races as I grunt a panicked plea for help. I’ve been paralysed before, but never like this.
My head lolls back like a baby as Mum lifts me out of bed. My hands and feet curl painfully as I fall into a seizure.
It’s March 2021 and I have no idea when my body will work again.
As a kid, I never stopped grinning. I beamed so much my teacher called me “the smiler”. Mum says I was super cheeky and giggly, I loved my teddies and animals made me happy. I miss being so carefree.
By the age of 11 I was a British gymnastics champion and I got to carry the Olympic torch at the London 2012 opening ceremony. It was one of the best days of my life – and then everything changed.
I was 12 when I started hiccupping out of the blue. Days turned to weeks, months and years – they just didn’t go away. My best friend Eve and I used to giggle about it, but my parents were concerned.
The doctor said, “It’s very strange, but there’s nothing wrong,” and sent me on my way. I was so embarrassed.
Some people aren’t built for secondary school, and I was one of them. I was timid and tiny for a teenager, overwhelmed by the enormous buildings and scared of my peers.
The stress of GCSEs caused itchy, painful shingles on my stomach and my hair started falling out, I had terrifying panic attacks and became a shadow of my former self.
Depression made me lose my love of gymnastics. I’d cry at Mum, “Please don’t make me go” – that wasn’t like me at all.
My thoughts were dark and dangerous – Mum and Dad knew I couldn’t be left alone and it really upset them. It was hard work for them to be on alert 24/7.
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I didn’t tell anyone but Eve – and she was horrified. The Evie Meg she knew would laugh and mess around. But I wasn’t that person
anymore. She didn’t know what to do.
Sadly my grades weren’t as good as they could’ve been – I failed five exams – but in 2016 I went on to study animal care at college. Animals have always made me happy.
For two years, I was put into the college’s special unit for people with disabilities and those who need extra help. I took medication and saw a therapist for my depression, but the worst was yet to come.
Weeks later I experienced my first seizure – my body twitched uncontrollably and I fell unconscious on a bean bag in the student common room – and they’ve never stopped since.
Remember my hiccups? I now know that they were the start of Tourette’s syndrome – a condition of the nervous system that causes involuntary movements, words and sounds.
At college I developed awful tics, like bashing my knuckles together until they were bleeding, black and blue.
Imagine you hear a song in a shop. You’re trying not to, but you want to sing at the top of your lungs – that’s what it feels like when I hold in my tics. My spine tics are the worst. My back will arch back in a split second and knock me to the floor. Another makes my hand scrunch into a fist and whack my head, sometimes so hard it’ll trigger a seizure.
I can feel a seizure coming – I get a headache and feel like I’m really far away – and Mum says my face totally changes to a vacant expression.
In 2018, a seizure paralysed my legs for a month. One minute I could move, the next I was in a wheelchair unable to do anything for myself. I tried to stay in good spirits, but I felt pathetic and upset as I arrived at A&E with floppy limbs. Just like with my hiccups, the doctors had no answers. I left angry and uncertain about my future.
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Sometimes seizures cause my whole body to shut down – I can’t speak or move for hours – the paralysis is leftover seizure activity [uncontrolled activity between brain cells]. My parents are prepared for this now. They help me stay calm and comfortable until I can move again. I get so scared I’ll be locked inside my body forever.
Finally in 2018 doctors diagnosed me with Functional Neurological Disorder (FND), a misunderstood condition that causes the brain to send the wrong signals – this was causing memory loss, seizures and paralysis. Other symptoms include speech issues, brain fog, pain and temporary blindness.
They told me that my poor mental health made my brain say, “Nope!” and it reacted in these debilitating ways.
I knew college was a no-go – there weren’t enough staff to keep me safe. Caring for the animals was one of my biggest comforts and seizures took it away. Then my mental health took a terrifying turn. I developed the strangest feeling that nothing was real – my family, the planet, even me.
I couldn’t recognise myself and acted recklessly. I thought, “If the world isn’t real, I can do what I want”.
I began having delusions and believed there were cameras watching me in my home, on lamp posts and in shop windows. I felt unsafe, like a “wanted person” and in 2019 it got so bad – I screamed and cried inconsolably, convinced there were men in the house – my parents almost had me admitted to a mental hospital.
Mum thought she was losing me. I’d yell, “Don’t lie to me, you’re not my mum!”
My parents are incredible – they’re never angry and love me for who I am.
I was diagnosed with derealisation and depersonalisation disorders – they cause
you to feel like you’re outside yourself and that the world is unreal – and thought I’d be trapped in fear forever. But now I’ve been delusion-free for two years, thanks to medication and therapy.
It was only last year that I was finally diagnosed with Tourette’s. It sounds odd, but I was happy – I’d spent eight years feeling clueless and unheard, and now I have a name.
I try not to dwell on the bad things or ask “Why me?”. I’m upset that I have to live like this, but there’s no use in self pity. I’m still doing well in life and have things that make me happy.
My friends and family don’t register my tics anymore. They’re just part of me, and some make us laugh – my tics can make me throw my breakfast across the kitchen!
My disabilities affect my whole life, from making breakfast to feeding my pets and even holding a conversation. Going out in public is hard – seizures aren’t pretty and my tics can be embarrassing (I might swear or make a scene), but I’m not ashamed.
Sometimes my tics make me shout swear words or silly things like “beans” and my body can jerk at any moment. I also get tic attacks that last for hours – they feel like a surge of electricity making me tic constantly. I can hit myself hard, repeat words and even scream at the top of my lungs. Sometimes they’re so severe I can’t breathe and drugs like Diazepam don’t work to calm me down. It’s exhausting.
I still have regular seizures, and some are excruciatingly painful. Every single muscle from my head to my toes can lock up, my jaw dislocates and my pupils dilate. I get scared that they won’t stop.
I used to feel angry with my disabilities and believed they’d ruined my life, but Tourette’s has opened new doors and I’ve made so many friends.
Now I share viral videos of my tics and seizures with millions on TikTok to raise awareness – I’ve even written a book about my journey so far.
People flood my social media feed with positivity, but I deal with haters too. They say I’m faking it, but they don’t understand – I’m here to change that.
My life has been turned upside down and I do worry about my future, but I’m grateful for my disabilities. I only hope that
I can help others like me feel accepted and live a fuller life.
My Nonidentical Twin: What I’d Like You To Know About Living With Tourette’s by Evie Meg (£14.99, Sphere) is out now
Follow Evie Meg on TikTok @thistrippyhippie
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