Meeting others

[MTBmitch]

I have always wanted to meet someone else with tourettes but I don't know if it would be a good thing or a bad thing any thoughts?

[Bootgates]

Interesting question. I suppose it depends on a lot of things really. How you generally respond to others with public disabilities is a starting point. How comfortable you are with your own disability? I think I am a lot more comfortable than some I know & not embarrassed of them. I'd defend them if it were necessary & talk to them too. The only thing that put me off recently when a man in a wheelchair got the bus recently & was clapping,talking out loud & a little swearing & I was prepared to talk to him unlike anybody else was this over-riding stench of urine. it wasn't like it was maybe a little accident that had happened that day but I mean an ingrained unwashed smell that nearly took my head off & I couldn't concentrate on anything but covering my nose as discreetly as possible & trying to stop myself from being sick. Which ended up making my habit worse because i felt bad. So think about your options.

[MTBmitch]

Thank you this has given me a lot to think about

[Seonaid Tourettes Action]

Hi there

thanks for your post - I guess there is one way to find out and Tourettes Action run support groups who are very understanding of the issues you raise. Getting support and advice from others can be so beneficial for mental health, self esteem etc but also it is a personal choice and may not work for you? If you are interested in the support groups I have put some information here - if not then if you have questions or things you want to discuss without meeting others then I think the forum is the perfect place? let me know what you think

best wishes

Seonaid

tourettes-action.org.uk/gro...

Living with TS can be difficult. Everyone needs and deserves all the help they can get. In a Group you can:

¦Meet others in similar circumstances

¦Share coping strategies

¦Make new friends when you may be feeling isolated

¦Share information about treatment options

¦Solve problems dealing with the health care system

¦Share knowledge of local services

... which may help improve your mood and quality of life.

[catherinem]

There are definately pros and cons to meeting fellow ticcers, I should know, I run the West Midlands group, but the pros definately outweigh the cons. In a rather anal way I'll list them - The pros -

it's good to meet people and gain friends that you have something in common with. I wasn't diagnosed until I was an adult, I would to have loved to meet such people that I have met since being diagnosed such as Ruth and Jess (aka Touretteshero) and to have had their friendship and support since my teens. For me as group co-ordinator I get a warm fuzzy feeling "fixing people up" or rather introducing people that I meet, child,adult ticcer or parent to others with similar experiences. As well as TS we find that we have other things in common, many of us are keen and talented musicians or other creative types and share the same "sense of humour".

Another pro is being able to share the care that you're currently getting, for example boy A was refered to a neurologist and is currently being treated by a hospital based neurologist when boy B was discharged by CAMHS when clearly he needed support, after meeting boy A's mum and comparing situations after feeling very frustrated and let down boy B after some pushing has now got an appointment lined up to see the same neurologist at the hospital.

Another pro is that we have built up a support network here and we can and do keep in touch with each other and many of us do meet up outside of meetings.

The cons - Catching tics from others, this happens all the time and is usually a temporary thing, we copy each other, we bounce of each other, we take it on the chin, at times we've laughed at ourselves so hard we've nearly had a mishap. Tourette's syndrome is the most bizarre condition you could get.

One thing that has worried me (this is just me and I do also have OCD like any other self respecting ticcer) hence I worry, (quite often a lot) that quite a few people since meeting me have developed coprolalia (like me), luckily today I had the chance to meet up with the lady who did habit reversal training with me and put this to her, she said it's mainly due to the suggestability of TS (the ticcy beast within is influenced by those around you and what you see, such as the woman with the orangey coulored hat on the bus earlier "GINGER HAT" ???!!!!!) and also probably due to the fact that I'm very relaxed about my tics and never hide the fact I have TS and although I don't like to offend people (I would have found it difficult to sit by the un-washed man on the bus who smelt of wee without ticcing) and do feel bad when it's close to the bone and know it's probably something that person is acutely aware of ("ginger hat" is just stupid and childish as tics go and hats come in many different colours) I do know that a lot of the time I'll probably never see that person again (they're avoiding me and decieded that they'd rather walk than see me on the bus again). Yep, her theory was that my attitude had probably rubbed off on them and they felt less inhibited and felt they could let tics out (and not care) rather than suppress.

I hope my waffling helps clarify things a bit.

[scorpiodog]

i was very dubious about meeting others with tourettes and jumped in the deepend at the TLC meeting in galashiels

after a few hours of being very tense and suppresing like hell i relaxed and it was probably one of the best things ive ever done i wish i could have stayed there forever i never felt so at home and comfortable with myself

when i got back to my home town everyone seemed so dull and miserable

hope this helps spur you on to make the leap i did and meet up with others

[TonyBoy]

The last meeting in Finsbury Park a few weeks back, I was looking forward to it especially as I live across the road from the venue, but at the last minute I couldn't get the courage to go. I kept thinking how I would have images of the people I had met and it would be inevitable that I would try those tics out, and of course get stuck with them. I wish now I had of gone, but there you go.

[Showoff]

Hi Everyone, I'm a newbie!!! I currently live in Fort Lauderdale, Florida! I'm 30 years old and I've been living with Tourettes syndrome since I was 8. I have never really met anyone with Tourettes Syndrome although I think it would be a great experience. I actually never really voiced Tourettes Syndrome in my adult life because I feel as if I have control over it now although any time I'm anxious, angry or upset I can't seem to control my tics, thoughts and behavior. With this, meeting someone with the same symptons seems far fetch in my book however on a positive note it may be just what I/we need in order to learn more about what others go through and how they handle their situations.