Living With Tourette Syndrome, Tics And All

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Emily has Tourette Syndrome, a neurological condition (or brain thingy as she likes to call it) that causes her to make certain movements, or tics, and to blurt and shout things out that she shouldn't, and that she can't control.

Tourette's has been a real challenge for Emily. She has a pretty severe case of it and it is just super hard and painful for her, even with all the advocacy around. There are two key part to her Tourette Syndrome - Echolalia and Coprolalia. Echolalia is the tics, the compulsion to repeat words or phrases that she has heard other people say, or movements, and Coprolalia is the really hard one, it's a part of Emily's Tourette's disorder that only 10% of sufferers have and is where you feel compelled to swear and shout out rude things and generally can't stop yourself from that desire to do or say that taboo thing. It's like a disease.

It's always the rudest and most socially unacceptable things that she feels compelled to yell out, and she really has a very hard time controlling it. She's in therapy to try to help her manage her Tourette Disorder, and they work on things like retraining her tics to come out in different more acceptable and less disruptive ways.

For a lot of the swearing tics her therapist would help her change the offensive words into more acceptable ones, like the word B-I-T-C-H she would change in her head to B-E-N-C-H and then shout out the word bench. This way she's not working so hard to suppress the tic which actually makes things worse. Holding that Tourette level urge in makes her feel really ill and tired afterwards. Living with Tourette Syndrome is constant work for Emily.

Some of the smaller tics that she displays are things like blinking a lot, or rolling her eyes back and up into her head. She also has some larger movements like shoulder shrugging, or sometimes she'll just feel the urge quickly move her head back and forth, or to kick her leg out.

Another tic that caused her a lot of problems was the urge to click and crack her knuckles all the time, even when they didn't need cracking. When she couldn't crack them with her hands she would try pressing them down on the table, harder and harder, and she ended up really bruising and hurting herself.

Her teachers and classmates know, of course, and if the tics and Tourette's get too bad in class she has tic room she can go to, let it all out, and then head back to class for lessons. She really didn't want to go to a special school.

Still it's really hard to focus and concentrate and she feels like everyone is staring at her. Her friends are great about it, but even they feel the need to point out her tics sometimes, which is kind of annoying.

Emily has done an amazing job living with her Tourette Syndrome, and she gets better and better at managing it all the time, and the counselling. Her one message to all those suffering from a disability or condition, or struggling with anything at all - she wants you all to know that there is always light at the end of the tunnel, things will and do get better, and to have faith!

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