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the FAQs about
Tourette Syndrome

Part 2 - Living with Tourette Syndrome

Due to its neurological nature Tourette Syndrome is likely to have a far greater impact on one's personality and mode of perceiving the world than, say, albinism or arthritis.

Also, if one does not understand the Tourettic aspects of your personality, I believe one can be very prone to dilemmas of a more "existential" than "medical" nature.

For example, for years I lived with the notion that there was something vaguely wrong with me, something "burning feebly through the tendrils in my brain." As a result I did a lot of psychiatric reading to try to track it down. It was only after I saw Tourette Syndrome portrayed from a more human perspective that I recognised it in myself.

For this reason I strongly believe in sharing our experiences as Touretters in our own terms and not trying to conform to some perceived "scientific" or "objective" standard of how we are supposed to feel and what constitutes "permissible evidence."

2.1 - "Is it possible to have been ticcing years and not know it? Am I just imagining it?"

The medical descriptions of TS and tics seem so weird, and the media accounts of it so spectacular, that it seems to be impossible to have TS and not know it.

However, the accounts in the literature are of necessity more extreme. Mostly, it is only if the tics are extreme that a Touretter seeks medical help for the tics themselves and it is these that get recorded as "TS cases."

Also, most researchers write from the perspective of non-Touretters. Because TS mostly starts early in life, the tics, especially if they are not severe, mostly feel like a normal part of you - which they are. If you think of them at all, you may think of them as "something I just do," or as habits you can't seem to shake.

If you are conscious of the urge to tic, that conscious form of the urge to tic can take many forms: a sudden flashing of an unpleasant memory followed by a compulsion to cry "Kill me!", a feeling of intense confusion and being overwhelmed at the smallest physical stimuli like a car speeding past you, a feeling of exuberance which you have to express, or any other vague feeling.

All this means that, from a personal perspective, tics can feel more like expressions of deep hidden emotions than "like meaningless nerve twitches."

Because tics are unconsciously suppressible, especially when in public, you may find yourself ticcing only when you are alone. This may lead to two dilemmas: because you don't seem to tic throughout the rest of the day one easily thinks that you are ticcing deliberately, that you are some sort of hypochondriac pretending symptoms. Also, because you find that you are unable to suppress them when you are alone, the tics feel as if they "take control of you."

Also, if you are aware of the urge to tic before you tic, it is easy to construe the urge to tic as deliberately deciding to pretend to tic. Especially if the mental inner words associated with the urge to tic are sometimes something like "It's been long since I ticced, I want to tic, NOW!"

It is easy to fall into existential dilemmas where you think, on the one hand, that you have a weak, perverted personality because you have these urges to pretend that you have an uncontrollable neurological condition, and on the other hand, that you are even more sick because you can't seem to control this "perverted" desire to deliberately pretend you have uncontrollable urges.

Cracks your brain reading it, doesn't it? Imagine feeling it.

In fact, understanding your tics for what they are makes a huge difference to how you feel about them.

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