This is an anonymous post from a sufferer. It highlights ways in which anger manifests as a result of Tourette, and co-occurring issues.
I’m learning to deal with anger. I’m also learning how much Tourette syndrome has contributed to my behavioural issues. I try to suppress it, but it usually finds its way to the surface.
I was bullied badly as a child. I would leave school early some days just to avoid being beaten up.
It’s impossible to quantify how much of the bullying was because of my tics, there was never any reason given for it.
Being neurodivergent probably contributed to being the punching bag.
‘Strange’ behaviours stand out. Who better to bully than the anxious kid? It’s easy pickings for a bully.
Years of torment at such a young age- along with being on the spectrum and struggling to understand my emotions- led to an incredible amount of built-up tension.
The confidence-destroying teachers
A teacher told a kid in my class ‘do you have Tourette’s or something?!’ after he cursed during conversation. The class laughed. I felt forced to play along.
One teacher shouted ‘whose making weird noises?!’ after I had a small vocal tic in class. Thankfully my friends didn’t give me away, but the damage was already done.
Another teacher told a whole class that I had Tourette’s. She was an English teacher. She told my best friends younger brother (seven years below me so I wasn’t even at school anymore), and one day he just asked me out of the blue:
‘(anon), do you have Tourette’s?!’
I didn’t know what to say. I wasn’t expecting such a personal question. I don’t blame my friends brother, he was curious. I blame the teacher.
I felt it was all my fault. I hated myself for having something so embarrassing I didn’t want to talk about it. I now know that my anger was understandable, and the teacher was in the wrong.
Stereotypes and not being taken seriously
Documentaries only showed the extreme, ‘entertaining’ side to Tourette.
Tourette became a swearing disease to the general public.
I wanted to hide my tics growing up, I didn’t want to educate people on Tourette.
One day my frustration got the better of me. I overheard people joke about Tourette’s, so I told them I had it. They looked confused.
‘You don’t have Tourette’s, you don’t swear.’
The frustration of having to live with the condition, whilst being told I don’t have it. This stuck with me for a long time.
The co-occurring conditons
Anxiety, OCD, problems sleeping, ADHD, sensory issues…
These are just some of the problems I struggle with.
Having a brain that constantly itches to make strange movements and sounds is hard enough.
Tourette is so much more than just tics, and it’s hard to find people that truly understand the other struggles.
Not having the answers
‘Why does it have to be me?’ I asked my neurologist as a child. I know this because he quoted it in my medical records.
Why was I the one with the weird behaviours? Why do I get stared at? Where are these tics coming from?
It’s a strange experience to have as a child. Without answers or a cure, I felt trapped. I still do.
The social struggles
I know I seem ‘odd’ to my friends. I’m grateful that they are accepting of who I am, even if I don’t like to talk about my condition.
In fact, I’ve probably only told ten people about my diagnosis.
I had no idea that I could be on the spectrum as well. That revelation came after chatting to my girlfriend who is autistic. It makes sense why we clicked so well.
Now, I understand that my social struggles may be caused by something outside of Tourette. But this didn’t stop my tics pushing people away. Some people don’t want to associate with someone making funny noises and movements.
Again, the not-knowing caused me anger. Why was I ghosted? Why don’t I like looking people in the eye? Am I too weak or shy?
Now, it makes much more sense.
Turning to alcohol
Alcohol became my best friend in my late teens and early twenties. I was confident. I was cool. I could chat to girls and give eye contact.
But this took a toll.
Stressed at work? Drink. Stressed meeting new people? Drink.
I became a depressed, angry drunk.
I was drinking up to three bottles of wine a night.
I was angry when not drinking. Hangovers were the norm.
I got a reality check one day from my doctor. This made me rapidly change my lifestyle, and my health improved. My anger started to fade away.
Lack of dopamine
With ADHD, I struggle to stay engaged in any task.
This isn’t Tourette, but the two often work together.
When I am enjoying a task, my tics subside. But 95% of the time this isn’t the case, and my tics are present.
Not feeling fulfilled is problematic, it feels like I have to try twice as hard for half as much joy. This often gets me down and angry.
Finding comfort in junk food
Junk food went hand-in-hand with binge drinking. It tasted so good but the poor diet contributed to increased blood pressure, constant fatigue, brain fog and anxiety.
This was a very frustrating aspect of my day to day, but I couldn’t change my habits easily. It was an endless cycle of misery-comfort food-misery.
Sleep has been a constant problem for me, for as long as I can remember.
Whether it’s the neck tics when my head hits the pillow, the overthinking or night terrors, I just don’t wake up feeling fresh.
I often wake up with anxiety, and working shifts means my body clock is always messed up. Going to work in a zombie-state is as routine as the uniform I wear.
Struggling to find help in adulthood
I was diagnosed, placed on medication and that was it. Very little follow up, although my tics did improve at first.
No one mentions how hard it can be to get treatment as an adult. Especially for those that weren’t diagnosed as a child. I was one of the lucky ones.
Even now, I’m finding it difficult to see a doctor for my ADHD, and a specialist for autism. My doctor said the waiting list is crazy. It leaves me with little optimism.
Adults need help just as much as children, as adults are the ones bringing those children up.
Constant sensory issues
My body feels like it’s on fire, all the time. I find it impossible to sit still, and movies are no longer enjoyable to watch.
Every second feels like an hour when I am uncomfortable, which is basically all the time.
When I’m trying to sleep, I feel every inch of fabric rubbing against my body.
It’s like my mind is processing every single thing my body comes into contact with, and this makes my tics worse.
Resting just isn’t a pleasure I experience.
Being neurodivergent in a neurotypical's world
I remember each and every time I didn’t fit in. The teachers comments, students laughter and colleagues judging.
I was made to feel guilty for my feelings. Being stressed wearing a tie or belt. Fidgeting and ticcing endlessly and being told to ‘calm down’.
It would really help if people just understood these hardships and allowed me to make small adjustments to my day.
If we all did this, the world would heal.