I have Tourette’s, ask me anything

[Ticcinalong]

I find Tourette’s it’s the subject of a lot of interest online and in the media but few people ask much in RL perhaps for fear of appearing rude, so ask me anything. I’d be happy to help.

Do you prefer it if people laugh at what you say? Or just ignore it?

What’s your current regular ticks?

stealing laugh at my tics, just not at me, if that makes sense. If I say something funny, laugh, but also understand Tourette’s is a painful neurological disorder not a joke too.

My current regular tics are nodding, a funny skip when I walk, giving the finger, random words, whistling, blinking.

Hi op. If you try to stop/ restrict your tics, does it hurt? Is it like having an itch you need to scratch? I've just noticed my son nodding his head. He says his brain tells him he has to do it. Thanks.

wizzy yes an itch need to scratch is a good way of describing it. I’ve always said its like trying not to blink, you can try and not do it for a while, then it becomes all you think about until you’ve done it. Then as soon as you’ve done it it starts again!

How exactly would you ideally like people to react to your tics? I know you've said laugh at tics rather than you etc but if I passed you in the street during a tic would you prefer eye contact and a smile or for me to just not look at you? I'm trying to put myself in your shoes and can't decide whether I would prefer to be studiously ignored so I didn't feel stared at or whether if people smiled instead it would reassure me that more people are beginning to understand and recognise Tourette's. Hope that makes sense as a question!

You mentioned your current regular tics- do they change?

hiding you sound lovely, thank you for giving this some thought. A smile is always welcome, who doesn’t like a smile . From a stranger either eye contact and a smile or ignoring is totally fine by me.
Those reactions are so very welcomed in a world where being filmed on a phone, pointed at, spat on or shouted are all real occurrences.
Also it’s fine with me for kids to ask questions so don’t feel the need to go red and drag them away, that just teaches them stigma regarding difference.

4mogirl yes a key part of Tourette’s is that it waxes and wanes and changes. They can worsen and get better, so you can never really predict how things are going to go or what’s going to happen next!

There’s a child at school with quite noticeable tics. He doesn’t always appear to notice he’s doing them; do you?

giving the finger

Are the inappropriate things harder to control? I know some people swear randomly, does the mere thought of you trying not to do it make you do it? iyswim

Have you always had it or what age did it start? Was there a trigger?

shockers as an adult, yes. Although ticcing happens so frequently I don’t give it conscious thought a lot of the time.
As a child, no I don’t think I was very aware before about mid primary school years, but I did used to cry a lot that my head hurt (because it was shaking all the time).

pickwick I ticced mildly througout primary school and then dramatically as I got to my teenage years, hormones perhaps. It’s genetic and neurological but sometimes it just comes on at different times.
Inapropriate tics are harder to surpress, and are often influenced by external factors. Unlike non obscene tics which just occur day and night, unless am deliberately suppressing.

Are tics worse when you are stressed? Does being around other people make them worse for example if you are on your own watching telly are they better or worse?

Have your tics ever put you in a awkward situation? Causing somebody real offense/worse putting you in a dangerous position? (Hope you don't mind my question!)

clinical they are worse when am stressed, but also can be worse when am not stressed too IYSWIM, people always think am stressed when I am ticcing a lot but I’m usually not!
In an evening if I’m at home alone watching tv they will be worse if I’ve been out all day but I feel better as I’m not surpressing.

justanother I’ve been hit for being a ‘freak’ when younger, I’ve also jumped out of a moving car due to Tourette’s impulses and punched myself repeatedly to the point of broken bones. Life’s quieter these days however.

You may regret saying that, my DD(9) has many, many questions about everything! I totally agree about not teaching stigma about difference, my DD is 'quirky' (for want of a better word) and sees different as the ultimate compliment

hiding aww how fab! She will go far with her great attitude.

Thanks op. Do you get tired physically. You mention up thread it is painful. Do you have to be on pain meds? How do you feel about the media attention on Tourette’s do you think it is positive or negative and why?

clinical yes it’s very painful, violently nodding your head every minute for example causes torn muscles and headaches. Falling over, tensing muscles etc.
It’s also tiring, both the constant moving, difficulty sleeping and the anxiety.
I am on pain meds as and when needed but I prefer to not take too many medications due to having been on many meds throughout my life, I prefer to manage the condition holistically as much as possible.

I think the media is a double edged sword. On one hand awareness is good and positive and means people are aware of what it is, but the incessant focus on swearing drives me to distraction. For me that’s a tiny part of the condition and I get irritated it being the only thing people think that’s involved, when actually it can be a physically disabling condition as well as an embarrassment.

Morning, everyone. We're going to move this thread over to the new AMA section shortly.

Have you ever tried hypnotherapy and/or acupuncture? My friend did for her tics and found it useful. Not a cure but reduced the number of tics dramatically.

boooommm no I have not tried those. That’s great to hear about your friend.I’ve had CBIT, different to CBT, which was slightly helpful.

Do you feel offended by people saying things like "Alright Tommy Tourettes" (about someone without the condition who has just unleashed a load of swear words)?

nothefordtype most people don’t actually say that in my presence, but yes plenty of other jokes. Surprising on how many people say to me ‘oh I’ve got a bit of Tourette’s too’ and laugh like it was the most hilarious witty comment ever . I’ve seen several comments this week about people getting football Tourette’s while watching the World Cup. I just ignore mostly. I do get sick of the mind set of Tourette’s = swearing = funny and will challenge things if they go too far.

Why do the tics have to be rude though?!