Tourette Syndrome is an extremely visible and audible disorder. Whether I'm flinging my arms around, jerking my knees backwards, or screeching like an owl it's impossible to disguise as anything other than what it is. I've always been a reasonably uninhibited person; however, as I've gotten older and my tics have grown in severity and frequency I've had to become even less inhibited. It's a long, daily struggle for those of us with who deal with this disorder.
I don't get this so much anymore, but when I was younger and would go into stores I would be having shaking tics. I would go past a cashier, a greeter, or someone else who works in the store and they would ask if I was cold (sometimes this would occur in the middle of summer). In the beginning, I would just sort of laugh, embarrassed and nod my head. Then I got a little bolder and would occasionally say, "No, it's a tic. I have Tourette's." This statement of course meant nothing to them and was usually met with awkward silence. Lastly, I came to the stage I'm in now where if someone presents me with such a question, I answer with simple, blanket 'no.'
One of the things I'm learning these days about having TS is that less is more. Further explanation is not always needed or required. One of the perks of being an adult with TS, is that people, particularly those in authority, have less of an annoying habit of calling you out on your tics or asking you to stop. I can't tell you how many times my mum had to go to bat for me and tell someone too ignorant to ask what was wrong, that her daughter had Tourette Sydrome and couldn't help the screaming tic she was dealing with at the time.
When my tics and/or my sensory processing is out of wack, (i.e. light, sound, etc.) periodically I am called to rely on some sort of aide whether it be noise-canceling headphones, indoor shaded glasses, or something more obvious such as a rollator. The rollator is something new that I've added to my repertoire of aides that assists in not only supporting my body when jarring tics emerge, but also when a "fainting" or falling tic occurs. These aides are invaluable at times, but using them does take some getting used to.
Sometimes suppressing tics is something those of us with TS are called upon to do. This can be due to too much stimulus, a strange environment, or just feeling generally self conscious. Unfortunately, holding our tics in is not only extremely difficult and stressful, but allows for co-morbid disorders to come more to the forefront (See: Post on Co-Morbids). Also, when we finally do decide to let our tics go, it can be likened to the eruption of Mt. St. Helena leaving destruction and pain in its wake.
My environment is ever changing, so it's not always easy to just let it go. Sometimes tics are held in subconsciously which can have detrimental consequences. A person with TS has to be creative in learning when and how to express a tic. It's a process and not an instinct that requires the understanding and cooperation of those around you. Learning to understand one's body and the messages that are being sent it a vital and never-ending process.
