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Coping With Tics

I initially got interested in learning about coping with tics because I have them. And just in case you arrived here because you have an insect infestation problem, I am talking about unvoluntary movements and vocalizations. Also: good luck with the bugs.

I have tics. Sometimes I have them in a big way. I’ve had Tourette’s Syndrome since I was about six years old. Or, that was the age when my parents first noticed me doing anything unusual.

I’m 33 now, and I have no interest in coping with them. This is because I do not believe that coping is a solution, or that it is a goal worth aspiring to.

It may be the best we can do at times, but to me, coping is white-knuckling it. Coping is doing the minimum to get by and survive. To cope is to exist. And I hate to say it, but anything that does kill you allows you to keep on existing. But that doesn’t mean you’re living or thriving.

I say this because I’ve been on both sides. I coped for far too long and I lost time that I can’t get back. It was not until I got interested in improving or even reversing some of the challenges I was experiencing that I began to make progress and have better quality of life.

I say this specifically about tics, but I believe it can apply to any challenge.

A substitution for coping

Regarding tics: what is the opposite of coping? I would suggest that initially it is experimenting. Experimenting with diet, tic speed, angles of motion, breathing, and many other things that I have discussed in the How To Have Tourette’s series.

Why experiment? Because it is taking an action. The actions may not always lead to answers or improvements, but they will probably lead to more questions and more experiments. And those might lead to answers.

My doctors ran out of experiments for me to try. I was desperate for answers and eventually they ran out of things for me to try. If I had not tried anything else, I would never have made it out of coping mode.

Here is how I do it. I found it very hard to measure progress back when I pretty much only divided days into “good” and “bad.” Bad meant that I had lots of tics. Good meant that I had fewer tics or I wasn’t forced to notice the tics I was having quite as much.

With only these two metrics, it’s difficult to really know if good became better, or bad became good. And harder still to measure it for days and days in a row, because you are trying to recall feelings and sensations that cannot be recalled exactly.

George Orwell said that the surest way to convince yourself that you are infallible is not to keep a journal. Not tracking your own progress means that you never have to look at a timeline full of numbers and try to figure out what did or did not lead to various events (or tics).

Here is what I suggest as an action plan. It has worked for me, allowing me to go from one of the most severe cases of Tourette’s that my neurologists had ever seen, to going for one full month without tics, and having an exponentially improved quality of life. I still have bad days, but if my old bad days were a 10, today is a 2.

1. Measure whatever you can measure. How many tics per minute/hour/etc? What kind of tics are they? How much sleep did you get? What did you eat? What time of day were things worst? When were they best? What was the lighting like in your environment? et cetera. Question question question.

Use a number scale when you’re trying to evaluate something like your mood. I use a 1-10, with 10 being deliriously happy, and 1 being holy-crap-my-tics-are-crippling-me.

2. If you need prompts for experiments, I believe this Tourette’s video I filmed is a useful starting point.

3. Find a way to improve on something that you are measuring. Find a way forward in something, and everything else may gain the potential for improvement as well.

4. Please ask me if you have any questions. I’ll do my best to clarify and explain what I’ve experienced.

5. Stay positive! It sounds corny, but whether you have Tourette’s or any other movement disorder which causes tics, things could certainly be worse!

I look forward to hearing from you.

Josh

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