Perspectives

Are you a newly diagnosed adult with TS? It's not uncommon to be diagnosed later in life as so little was known about TS when we were kids. An Adult with TS wrote Navigating the Wonderful World of TS shortly after she was diagnosed in her late 30's. Read her words of wisdom.

Navigating the wonderful world of TS

So, you are newly diagnosed with TS. If you were like me a ton of information was thrown at you and you are just starting to wade through it. Funny thing about all this information though... one place it says one thing and another handout says something else and the book you just looked at talked about something that hasn't come up before in anything else you have read. It's a wee bit overwhelming and confusing. Well, here are the basics as I see them (I'm not going into the definition of TS here as you have probably memorized it by now!):

TS is different for each person.

It's as individual as each person is. Yes, there is a wide spectrum of symptoms and like it or not, your symptoms or your child's will change from time to time. I had never had a snorting tic before but started one a few summers ago, had a huge snorting tic in the middle of one of the only quiet parts in Pirates of the Caribbean! I was not impressed and I'm pretty sure the people around me weren't either!

You need a sense of humour.

This is absolutely imperative. You know the old adage 'It's better to laugh than cry?' Well go for it, laugh away! Take the lighthearted approach and people will follow. You snort in a movie? Oh well, so what... maybe you woke someone up that had dozed off so they didn't end up missing too much of the movie.

Tics happen.

Sometimes they happen a lot, or they happen at inopportune times (see above) or they're noisy or whatever. They just are. Try not to dwell on them that makes them bigger and noisier and more inappropriate seeming.

Your TS should never be an excuse.

A reason, absolutely! If you don't think you can do something because of your TS don't sell yourself short. Sometimes accommodations can be made. There is a saying I like. It was Thomas Edison who said (or wrote I don't know which) "If we all did the things we are capable of doing, we would literally astound ourselves".

Give people time.

Sometimes people need time to digest new information or time to see that you are a person with tics and not just a disorder. Be patient but consistent. Some people need more time than others. If someone still gives you a hard time all you can do is smile and realize their attitude has everything to do with them and not you.

Connect with others who have TS.

I found that the more I got involved and met people with TS it made me feel more 'normal', other people had some of the same issues and tics that I had. All of a sudden there is a whole group of people where I fit in and I found it helped me to feel like I fit in better elsewhere as well.

Accept yourself and all that is you, tics included.

Now this one may be an ongoing thing. You may have new tics to accept, new situations to be accepted into and some days you may feel more accepting of your TS than others. You are who you are, you like what you like, you think what you think, and you feel what you feel, just as everyone else does and thinks and feels.

Join the world, get involved.

People are probably going to be more accepting than you think and it gives you an opportunity to educate others about TS. If you want to swim, go swimming. If you want to join a book club, then join.

Leave the past in the past.

This can be a difficult thing to do but you can never go forwards if you are stuck looking backwards. What's done is done. Those bullies in school, that boss that gave you such a hard time, the Uncle who told you that you could stop it if you just tried, ...leave it behind, for each of those people there are many more accepting and tolerant people out there. Another favourite saying of mine, Eleanor Roosevelt this time "Yesterday is history, tomorrow is a mystery and today is a gift".

Educate yourself and others.

Read all you can about TS, read other's stories and draw inspiration from them. There are several books out there with stories of people with TS and of course sharing stories with others is an invaluable source of information and support.

 

All these points are applicable if you have any of the other disorders that regularly accompany TS like OCD and ADHD. I personally tend to think of my own TS and OCD (and probably ADHD too), as one thing, not as separate entities but that's just the way I see it.

Now this might not be the information and the basics you were expecting, but remember, expect the unexpected with TS.
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