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.

How interesting a topic.

How do you fe l about having it? Does it affect your mental health,?

Have your tics been noticeable from birth?

Are you actively conscious of what swear words come out?

Are you triggered by any certain situations?

Do you try and laugh your swearing off?

What had been the funniest/ most inappropriate tic / swear you have done?

When did you start swearing?

Is it tiring? I always think it must be exhausting to be constantly interrupted by tics, always having to refocus yourself back on what you were saying or doing.

Have you suffered childhood trauma and if so do you know if that caused it?

Has anyone ever thought you were swearing at them and kicked off? If so did they believe you when you explained?

This is lovely OP as I think helps a lot of us to understand and be more thoughtful ; I saw an interesting documentary called a mum with Tourettes I think and felt it was really helpful to make people more aware and less ignorant if they hear unexpected swearing for example; and it left me with questions too-

Do you/ your family ever explain you have Tourettes and does this make it feel easier?

For some people with Tourettes do ‘inappropriate‘ or rude things come out because they are subconsciously so keen not to say them? If so can you control this at all eg the lady saw someone with red hair and commented but could she distract herself by mindfully thinking about something different?

Is there anything a member of the public can do to make it easier (if you find it hard) ?

I realise how ignorant I am and also how admiring as I think it takes courage to go out and interact when people might not expect or know about this condition .

If my kids comment on your tics if we see you out in public how would you like me to handle it?

Great AMA! But sadly lots of asks and no replies.

Do you know what caused it?

@Chunkymenrock

Great AMA! But sadly lots of asks and no replies.

To be fair, it was three hours before OP got a response. She's not obliged to stay online for ever until someone asks a question (at getting on for 11pm which might well mean she's in bed)

@rosegoldivy

It’s super annoying but I’ve come to terms with it, I’ve had it since I was 6 even though I wasn’t diagnosed till last year. The thing I have the issue with is how other people react and when I offend people, I really hate that.

I have severe mental health issues too, but I find the worse my tics are the more calm I am inside. When I try and suppress the tics I find the worse my I feel and the more it affects my mental health.

My tics started when I was 6 but they were mild, just eye rolling, making animal noises, things that were easily passable off as just rude or disruptive behaviour.

Sometimes I know what the tic will say, but that’s quite rare. Usually I feel the premonitory urge (which is often just a fizz inside me) and the words just come out. Often it’s a surprise what comes out.

Yes, I am often triggered by situations. Particularly if there’s black people or someone with a difference. The tourettes picks up on it and says the things that I really don’t want to say.

I don’t tend to try and laugh it off, most people tend to look at funny but I just keep moving, for example if I’m in the shop and I’m ticcing, I just keep going and ignore them and I just leave them in my wake.

Funniest most inappropriate tic was, I was at Tesco and there was a woman with a white cane (I assume she was visually impaired) and with her husband. I tic “stop hitting me with your blind stick”, no idea where that came from. I saw her multiple times round tesco and I kept ticcing it. I just kept walking, it was at a time I felt super awkward bringing attention to my tourettes, so I just couldn’t stop and apologise.

@olderthanyouthink

I didn’t start swearing (coprolalia) till I was 21, I’ve had tics since I was 6 but no coprolalia till then.

@sausagerole

It’s very tiring, exhausting. I don’t read anymore because it’s just so much effort. I like tv because I can just listen and the tics kind of just bounce about, most of the time I watch stuff that I’ve seen before, purely because then if I miss a bit cos of a tic I can just pick it up again.

@GNCQ

I have suffered childhood trauma but the tics started long before that happened. So I think it’s just one of those things.

@CovidCorvid

Yes, I had a tic saying “you’re a paedophile” and multiple times I’ve been threatened to be punched by people the tic targeted. Well not targeted as such but sort of targeted.

@Happyschool

I explain if someone asks or I offend them. I’ve got more confident at doing it in the past couple years, before that I just kind of walked away.

Yes that’s right, it tends to be the thing you least want to say. I can sort of suppress but it takes all my energy and gives me headaches, so I don’t tend to try to do that. I often can’t distract myself, or I manage to say it under my breath.

I like people to just ignore the tics, pretend they don’t exist, if I know you and the tic is funny then I don’t mind you laughing with me.

@Rainbowqueeen

Good question. The best thing to do is just explain that some people have Tourette’s which makes them tic and that’s what they’re doing and that it’s perfectly okay and some people just have a difference.

@Chunkymenrock

I was asleep, that’s why there were no replies at 11pm.

@Pepsimirror

Tourettes is an inherited neurological disorder, and they know exactly what causes it just that it often runs in families. My dad I think has very minor tics that he doesn’t even realise. So nothing in particular causes it. There’s been a few people who developed tourettes after a trauma as adults. So different things can cause it as well as being caused by nothing in particular.

@saraclara

Thanks, I was indeed asleep.

Does it get worst with certain triggers (stress, sleep, alcohol)?

@wombatsandaplant

Thank you for answering. I can't imagine how difficult things can be for you in stressful situations.

Do you have a good support network of people around you who understand and support you?

Has it held you back in any situations? Such as school / work / relationships

@toffeebutterpopcorn

I don’t drink so not sure on that but if I sleep too little I tic more, and if I’m stressed I tic more. Stuff like caffeine makes me tic more too so I don’t drink any.

@rosegoldivy

No problem. I like educating people.

Yes I do, I have a few friends with Tourette’s, and I’m a member of an online zoom group too.

It didn’t affect me too much at school or uni or work, I was mainly labelled as disruptive but I got good grades so that kinda helped. I find it’s more the co morbidities that affect me more, I have severe mental health issues and autism, which mean I can’t currently work and I’m not sure what sort of job I could get with my tourettes as bad as it is anyway. I dunno. Well have to see in future.

I've long thought that I have tourettes syndrome. I'm 33 now and have had symptoms since 7 years old. How did you get a diagnosis? I don't swear but have motor and vocal tics. I'm almost certain I have it but was told off alot as a child, so have always felt ashamed to speak to anyone

How does it affect your relationships with people?

@Fedupmum13

I got diagnosed at 25, last year. I asked my gp for a referral to neurology because of my tics and they happily put one through. It was taking forever so I actually went private, to a neurologist that specialises in movement disorders. I basically write out three pages describing my symptoms and how it’s presented since I was a child, and he was like yes I agree you have Tourette’s and that was that. Much simpler than I thought it would be. If you don’t have a long history of it it’s advisable to get an mri done just in case it’s something else. But because I had a long history of it that wasn’t needed.

I was told off a lot as a child too, my tics exploded at 21 but it took me 4 years to actually get the courage to speak to someone about it.

@marthastew

It actually sort of doesn’t with closer people, I only have 3 friends and they all know and don’t mind. Strangers are a bit more difficult, some are shocked at first but then understand, some don’t even bother trying to understand and others get it straight away. I don’t tend to make friends easily but that’s cos I’m autistic. I find the tourettes is kind of a talking point shall we say. It kinda breaks the ice lol.

What a fascinating thread, OP! I can't think of anything to ask you right now but I'd like to wish you all the best.

I am a secondary teacher and have a student (13 years old) who has recently been diagnosed. Severe motor and verbal tics. How can I best support them? Any advice?

Thank you - my 10 yo has ASD and seems to tic. Random words like 'chicken'.

Can I ask about your mental health? Totally understand if you prefer not to answer but what is your wider mental health like and how do you feel that it relates to your Tourette's?

Thank you for posting this. My 10 year old daughter had had many tics since she was about four, and last year developed pretty intense coprolalia. I think my saddest day was when I parked the car outside the house and could hear her in her bedroom.

Broke my heart.

But - we started her on cannabis oil and it's almost completely stopped her tics. She still does a bit of throat clearing or something but the swearing has stopped (for now) which we're all grateful for.

I was convinced she had Tourette's but now I wonder if it's more of a tic disorder and the first lockdown just really exacerbated it.

Have you tried cannabis oil at all?

I guess I don't really have a good question I just wanted to say thanks for sharing this. It's hard to deal with and that's even with DD being on the milder side of things.

❤️❤️

Is there anything that random members of the public can do to help? What would be useful for us to do if you’re really suffering?
Thanks for a really informative and helpful thread BTW.

@StillRunningUpThatHill there's a charity called Tourette's Action that has a lot of resources for teachers, and does a webinar I think.

Things my DD's teacher did:

Let DD draw at her desk to relax her
Let her tic and didn't make a drama of it when kids pointed it out
Gave her a seat near the door so she could walk out if she needed to let tics out
Emailed me to let me know if there had been a bad day
Referred us to the local council Educational Psychologist
Included DD in 'kit bag' mental health sessions for kids who can benefit from talking about their anxieties