I have severe Tourettes (swearing etc) AMA

[wombatsandaplant]

I have severe tourettes, mainly swearing, with lots of random noises and words and phrases. Plenty of motor tics too.

That’s a really helpful list. Would it be a useful thread starter in the staff room I wonder?
Is it painful or stressful to try and hold tics in? Sorry for multiple questions.

Is it known what causes Tourettes and if not is there research?

OP thanks for your answers and I’ve learnt a lot Eg to know you don’t know what you’re about to say as I sort of thought you’d feel it coming but not be able to stop it.
I hope people continue to become more aware so members of the public never make you feel awkward and I hope lots of people have the right instinct anyway ; I’ve only met someone with tourettes once which was recently when took a bike in to be Repaired; - we had a lovely interesting chat about dogs as shared an enthusiasm !

Personal question - my DDs girlfriend aged 16 has Tourette's.

How do you prefer people to react to your tics and swearing? We tend to just have a giggle and make a joke of it but I never know if I'm reacting appropriately and what makes her comfortable?

@AlfonsoTheTeribble thank you

@StillRunningUpThatHill

I see you got some good advice on page two, I’m not sure i can add anything to that.

@marthastew

I’m not sure how the tourettes relates but I have psychosis and depression too. It’s currently controlled by medication and it’s mainly the depression that affects me more. The neurologist said they interlink not so much the psychosis, that’s just a wild card I think, but the depression and anxiety often go hand in hand with Tourette’s and also autism,

@FuckShit

Tourettes is a type of tic disorder, it just means that it’s a tic disorder that has two or more motor tics and one or more vocal tic that occurs for longer than a year. I have not tried cannabis oil, I’m on three psychiatric medications, so probably not the best idea. But I’ve heard from friends that for some people it really helps.

@Wolfiefan

Best thing random people can do is ignore the tics. Often pointing them out or replying to them makes them worse and will bring more anxiety to the person with Tourette’s which will in turn often make the tics worse again.

It is painful to hold in tics and can cause them to be worse later on. I have suppressed tics in public to then get home and have a tic attack. Tic attacks are episodes where the tics are completely uncontrollable and violent (much more than normal), they can look like seizures even though they’re not, just because of how violent they are.

@DenisetheMenace

It is not known what causes Tourette’s yet, I think they know some parts of it but nothing definitive. It’s known it’s usually inherited. There is some research but nothing compared to other disorders or conditions.

Thanks OP. I just wish there was a way to take pressure off you if you were suffering.

@cricketmum84

For strangers I prefer them to ignore it, but people I know can have a giggle if you’re laughing with me rather than at me. It’s definitely personal, some people don’t like any laughing, others are comfortable for varying levels of people to laugh. It really depends on the person, but the main accepted thing is laugh with me not at me and you’re good.

Thank you for posting and for sharing your experiences. My 11 year old son has recently been diagnosed with Tourette's and I'm finding your answers to others' questions really helpful in understanding what it is like and what helps.

Out of interest I just googled if there’s ever a link with gut health as I’m slightly obsessed with this subject (different topic but probiotics have improved our DS’s anxiety so much it’s now gone , and there’s a proven link between the gut and brain ) and it is interesting to see reports that improving microbiome has also helped tourettes too in some studies? Have you heard this ?

It’s probably not helpful , but just in case as I’m really interested in micronutrients and nutrition and also saw a mention that magnesium and vitamin B6 can help. Sorry to sidetrack !

@StillRunningUpThatHill does your school begin with G?

Can I ask what the first tics were that you had as a child?

May I ask, why is it mostly inappropriate content and swearing ? Is it because it's universally bad or frowned upon to say those things so the harder you try not to say them, they come out?

I'm sorry if that's worded wrong or I need to explain better.

@Happyschool as far as I’m aware it’s only linked to Neurodevelopmental disorders such as ASD/ADHD etc. Can’t see how gut health would be indicated.
My ASD dd 15 has developed significant tics over the last year both verbal and motor which cause her pain. But my goodness she often gives me a fright when we’re sitting quietly and off she tics.

@Happyschool

I’ve heard about it in relation to Autism, but not anything else. I’ve heard magnesium helps anecdotally but not sure about anything else.

@Ginger1982

I had eye rolling, animal noises, kicking, laughing and licking things.

@twinkletoesfairynose

It’s actually not, only 10% of people with Tourette’s have coprolalia (inappropriate words and phrases).

FanPanCan, no, it doesn’t begin with G.

Very helpful advice, thank you.

I remember there was a "big brother" resident who had tourettes (yes sorry, very nineties) but some people thought he was doing it for attention on purpose.

Do you ever wonder if others think, or has anyone said you're just attention seeking?

^Not nineties I meant noughties I'm just so old can't remember my decades anymore

@GNCQ

I do tend to think that, mainly because I’ve had people tell me I’m faking. I actually used to my tiktoks to try and educate people on tourettes but I quit because I had a video that had over 3000 hate comments, it had like two million views too. I just couldn’t be bothered after that. I actually made a bit of money off it (high two figures so not that much lol) but I donated half of it to a tourettes charity.

I’ve had people not online tell me I’m faking too, or over exaggerating. I’ve had people tell me people with Tourette’s don’t swear, and that only children have Tourette’s. I’ve heard everything, it bothers me less now but not by much. It still gets to me, but it hurts less and less.

Great thread op , I really appreciate your honesty. My question is sort of sensitive, and I'm not meaning any offence at all!

There's a child with Tourette's in my dds school, and his tics seem to target her. She is autistic with heavy stimming behaviour and the bus ride to school is becoming unbearable because of what she sees as bullying (it's not- from him at least- he's suffering too and the fact that he "targets" the other "weird" kid has basically made them both bullied and targets as the other neurological typical kids take the piss out of the whole thing. When she gets in they taunt her and him as "shakes and shouts" and that's the nice stuff) how can I help her? Is there a way to make her less noticeable to him? Tbh I wish there were a way to stop all the other kids using this and making a joke of the pair of them . If they could just be kind (like all their bloody social media status's claim they are!) it needn't be an issue. It's a mob. But the school don't care and I can't change the behaviour of 40+ kids. I'm genuinely hoping that you have some tips to help this lad and dd.

And now that I've typed all
of that , I realise, that of course you won't have an answer. He can no more stop his shouts than dd can her shakes. I'm sorry the world is so shit for the neurological diverse

Just wanted to pop my head into the thread to say "Hi and hope you are well today" to the OP

This makes me wonder now if anyone ever thinks DD is faking. She's never mentioned anyone saying it but she often finds it hard to talk about.

What makes my blood absolutely boil over with fury is adults staring who should know better. DD had to leave the park one day as parents sitting at a nearby picnic table were staring at her. She was playing alone and swearing the whole time, but it's SO FUCKING OBVIOUS that she isn't in control of it. The words come flying out like they're being shot from a gun.

Anyone on this thread, please please don't assume the worst of every kid. And don't stare.

Her Headteacher said to me 'it's just lucky for her that she looks like what she is - a good wee girl' but she shouldn't have to 'look' like the right kind of person for it to be acceptable for her to deal with this disability.

Sorry for rambling on your thread OP but it's making me remember a lot of stuff that broke my heart.

@kittenkipping

Your poor daughter and poor boy too. I have no real advice, my tics target people too, it’s completely random and I have yet to figure out a way to redirect it. It’s awful though. I hate it so much.

@AlfonsoTheTerrible

I’m doing good thanks. Though I had a very awkward tic today I ticced “I’m gonna kick that fucking cigarette out your fucking mouth you fucking whore”, to an old man. So awkward. I didn’t even stop I just walked off quickly. Oops.

Thank you for starting is thread. My DD has Tourette's and the more people understand about tics and Tourette's the better.

I don't think most people realise about tic attacks and the lack of support available for people with tics.

DDs coprolalia started last autumn. Because of lockdown she hasn't had any bad experiences out in the real world yet, but some teachers have struggled at school (I don't blame them!).

Can I ask when you tell people about your Tourette's- do you put it on your CV, or do you suppress at an interview and then say when you start the job? If you are somewhere like a long train journey, where you can't just walk off, would you apologise after a tic?

There was a person in my hometown with tourettes of the sweary sort. They'd sit on a bench trying to eat chips and it would be like as FuckShit describes like shots from a gun, just words and words of the derogatory sort fired at everyone and no one in particular.
I really felt for them because they became a figure of fun.

However my actual question is: How much has it affected your employment opportunities? Can someone work and find employment if they have tourettes?