To ask what you think of Tourettes?

[SchrodingersMeowth]

And what you think when/if you notice adults with tics? Do you laugh behind their backs? If you think they don't notice you?

Also - if you have tourettes or a tic disorder, what medication you take?

I think living with Tourette's must be incredibly difficult, not least because people can be really horrible to anyone perceived to be different from the "norm" (whatever the norm may be)

I would never laugh, and I really, really do not find disability of any kind funny at all. I realise that there are many people who would laugh though

We had building work done last year and one of the carpenters had OCD and Tourettes. I didn't notice anything more than exaggerated blinking for ages but then he started talking about it, on the back of a conversation about my DC who has SEN. He said that he has to fight all day to suppress his Tourettes and then goes home, shuts himself in a room and explodes into tics and shouting. I felt heartbroken for him; he referred himself to his GP at 17, but because he suppressed it, the GP told him to go away...so years later, he struggles on.

I don't know that I've ever notice an adult with a tic. I've known a couple of kids with tourette's. I don't laugh behind anyone's back; not my style.

I've had tics for a long time (mostly neck movements and uncontrollable sniffing that has me looking and sounding like an absolute coke fiend) and chewing my pinkie fingers.

They now seem to have progressed and when I'm tired, stress of anxious have a lot of facial and vocal tics (mostly strange and kind of funny sounds)

I was laughed at really badly in the Drs surgery waiting room yesterday, could feel everyone staring at me.

Now on clonazepam to try and get them under control but I'm honestly now scared to leave the house.

We go on holiday next week and tbh this is the least dangerous of my medical problems but the one that's worrying me the most. I'm scared they will go fully blown while we're away and the kids will get teased or we will get laughed at again.

New medicine is clonazepam and I actually feel like I have a hangover from it but still had to wake up and take one. Arghh

My son has gross motor whole body tics. He's had teenagers mimic him in public. Heartbreaking.

Floottoot It's exhausting. The tics are exhausting and trying to hold them in is even worse because when they go it really is like an explosion and it's painful and tiring.

stUmbrageinskelt I'm so sorry your son is going through this :(

I have no words except that the people in the doctors waiting room laughing at you should be fully ashamed of themselves that's disgusting.

People stare and laugh at all sorts of things they shouldn't. I am so sorry this has happened to you. Have you looked at the Tourettes Action website? There are therapies than can help and have the same kind of success rates (approx. 30%) as the meds. I think you should ask to get referred to specialist (TA have a list)... you definitely shouldn't be afraid to go out. I am so sorry that this is happening to you.

Floot I really don't think he should have turned him away! I went to mines yesterday and about a month ago with full blown facial, neck and some vocal tics and I explained about holding the neck ones in as much as I can and he remembered seeing my neck move for years so was understanding because he knows they can be held off for a while.

That absolutely sucks OP.

Both my kids had tics, my eldest son diagnosed with Tourette’s a couple of years ago. I don’t know if my youngests tics aren’t as bad or he hasn’t reached the ‘bad stage’ yet (he’s only 7) or we are just a home so used to tics that it’s normal for us.

DS1 has had awful painful tics, loud tics, distracting tics, they aren’t too bad at the moment (they wax and wain in severity but never truly go) but he has an unusual foot/ankle one at the moment which means walking in a smooth fluid movement isn’t possible.

The only thing DS was prescribed was Phenergan to help him sleep but the tics still kept him awake and he was just a total zombie the next day.

I know that anxiety and change makes DS’s tics worse so we try and work on that as well. We use mediation apps and videos as well as hypnotherapy. I would really recommend that.
The more he suppressed them, the more they burst out at a later date (usually at home) and the more anxious they make him.
Sorry you’re suffering, it can be an absolutely pain in the arse can’t it?

I can spot someone with tics from 100 paces now, but I couldn’t before.

DontGo and Lucy thank you, honestly 2 hours earlier I went to Tesco and did a shop and didn't worry because I knew it was clear I couldn't control the movements so no one really stared. Didn't expect it in the surgery so that threw me.

I'd never laugh behind someone's back over a disability. That's something a narcissist wouldn't do.
However I'm sure you'll appreciate me being honest here. If someone insulted me Wether they had tourettes or not.
I'd still be fuming.

You don't really see it like that "Oh they must have tourettes. All you see is you're being offended and upset

*meditation

I would NEVER laugh at anyone with tourrettes/tics, in front of them or behind their backs, and if I heard anyone else doing that I would give them what for. I work with people with disabilities and I was discussing this with one of my clients the other day, who has cerebral palsy which makes her speaking voice unusual, about people laughing at her. We were saying how short sighted people are who find these things funny, do they not realise it could be them one day? We are all temporarily able bodied!
OP please go and have a lovely holiday and try not to worry about idiots!

However I'm sure you'll appreciate me being honest here. If someone insulted me Wether they had tourettes or not.
I'd still be fuming.
You don't really see it like that "Oh they must have tourettes. All you see is you're being offended and upset

^This

I feel sorry for them. I would never laugh or stare.
But I might move away, as tics make me nervous: I think it's normal to feel wary if someone is behaving in an unpredictable or unusual way.

Hope you find a medication that works for you

JustVent My friend managed to suppress them for a while with a good massage (she is trained) so I definitely will be looking in to alternative therapies. I'm also now officially starting the process of being assessed for ASD and/or ADHD which I'm doing mainly so I can understand my eldest Son better (6) he didn't originally meet the criteria for ASD in the assessment but the professionals want a second opinion.

Due to my other health issues I missed 2 appointments with his speech and language therapist (which I am full of regret for) and so we were referred to social services. That was bad enough with just my other weird health problems, now I'm worried they will think I'm not a fit parent if they see me with full blown tics.

The stress of all that is ironically making the tics worse

No, I don’t laugh at tics, stems or outwards signs of an invisible disability, any more than I would mock someone with a visible disability. I’m delighted to say that I have no friends or family that would.
What do I think of Tourette’s? That like other disabilities, it’s exhausting, frustrating and isolating to live with on a daily basis and other should recognise and accommodate that.

OP I, and everyone I know, would never laugh at someone with Tourette’s. It seems to be an exhausting and life-consuming affliction (sorry if this isn’t the right word - can’t think what to call it so as not to offend) and generally when I see someone who has it i just think what brave individuals they are, and how difficult their life must be. People who laugh at those with problems are cunts.

Awwlookatmybabyspider I understand that, although feel I have to point out that most people don't have the sweating or insults or words. For example, my "vocal" tics are sniffing a lot, a weird yelp if I try and stop the sniff, random popping noises and a couple of other weird but not actual using language tics. :)

I do understand why people would feel that way although the people with coproalia (so?) The swearing, must live in total anxiety. Even the tics that aren't noticeable are really exhausting physically and mentally and the more you worry, the worse it gets.

Loving the responses. I can't believe I went away from Mumsnet for so long, the place and all of the lovely people kept me sane for years.

I'm so happy about the responses, I will admit I was expecting it to be more like "won't say anything in front of them but will laugh when they're away) and I don't really mind that but it does play tricks with your brain, wondering who is just playing understanding and going to be telling everyone later about the weirdo who wouldn't stop looking like an idiot:(

OP it’s absolutely nothing for people to laugh at, honestly. And someone isn’t a weirdo because they have Tourette’s!!! (They could be a weirdo AND have Tourette’s but that’s another matter! 😂)

Oh I'm perfectly aware that I'm probably a weirdo in other ways but I don't worry about that stuff so much because I've accepted it lol.

I haven't actually been diagnosed yet but I've had tics (vocal and motor) for at least 16 years, it's just we used to assume I was moving my neck so much because it hurt, now I realise when the tic takes a little break (the neck one rarely ever takes a break now) that it's actually the movement causing the pain.

To try and not drip feed:
I have Ehlers-danlos syndrome, lots of co morbid conditions from that including a surgical feeding tube and a suprapubic catheter. Sometimes use a wheelchair and very often have to wear a full on hip brace and shoulder braces, walking stick and/or a wheelchair. I worry about people noticing them less than the tics!

I worry about social work and what their view will be and am just praying they don't see issue with it.

I didn't want to scare my kids yesterday so just told them it was "like a glitch and will get better after mummy sleeps, in the meantime you can laugh at mummies funny faces and noises) btw they absolutely know never to laugh at anyone else.

They said "I would never laugh at you Mummy, I love you" I ended up in tears from that lol!

And Christ this clonazepam is strong! I hope I'm not now going to be going through life stoned lol