With Tourette Syndrome, there is often a perception that the fewer tics you have, the better you must be doing.
This is not always true.
Over the past several years I have put immense effort into learning to suppress my tics so that I can go about my life without unwanted movements or vocalizations working as distractions from the life I want to build and the way in which I would like to be perceived. I thought, mistakenly, that the fewer tics I had, the better I was managing. The ability to pass as neurotypical when it suited me was a point of pride.
Little did I know, this was not the sign of self-mastery that I thought it was. It was actively hurting me.
It’s impossible to say what causes any given case of Functional Neurological Disorder, but in retrospect I believe that my misguided management of TS had at least something to do with it.
In any case, since receiving my FND diagnosis and learning more about this mysterious and strange disorder, I’ve begun to spot symptom triggers that had escaped my notice while I still had no idea what had caused the precipitous decline in my health.
Suppressing my tics all day every day, as it turns out, was one of the biggest symptom triggers of them all.
Not allowing myself to tic freely was actually causing me to seize.
Why is this important?
Many people with Tourette Syndrome are being funneled into treatment approaches which emphasize tic reduction as the litmus test for successful management, rather than evaluating more holistic measures such as quality of life and a person’s own relationship with and views towards their individual symptoms. People are being prescribed therapies which teach tic suppression as a main technique for “treating” TS. Others are being over-medicated in response to the presence of tics, or are being otherwise pressured to, quite simply, stop showing any symptoms whatsoever.
This all leads to what I like to think of as “toxic tic suppression”.
Don’t get me wrong - sometimes selectively suppressing in specific circumstances can be helpful. Sometimes it is necessary.
But the pressure to do this all the time is toxic, and leads to all manner of negative health outcomes.
Most people with TS don’t have seizures, but just think: if a seizure-vulnerable person suppressing tics sends them into a seizure, what effects does it have on other people that just aren’t as visible?
If you believe current research: nothing good.
The latest studies say that pushing people to suppress their tics all of the time as a primary coping technique leads to depression and all manner of other horrible health outcomes.
So what are the alternatives?
I personally have been working on simply getting more comfortable with letting people see me tic. Everyone knows that I have TS, so why, realistically, should I care if they see me have symptoms or not? It’s easier said than done but I’m getting there slowly. I have been allowing myself to let my guard down and be noticeable, hyperactive, and loud. And I feel more relaxed, healthy, and mentally present than I have in a long time. Best of all, my seizures have been steadily decreasing in frequency and magnitude.
But if you aren’t as comfortable, or have self-injurious tics, just letting yourself tic freely might not be as viable of an option all of the time. If this is your situation, I’d urge you to try Cognitive Behavioral Intervention Therapy. This is a therapy specifically designed for Tourette Syndrome which teaches awareness of tics and tic urges, and helps to teach competing responses rather than flat-out suppression. With a CBIT approach, that “tic energy” still has somewhere to go rather than being bottled up inside of a person all day where it can do so much damage.
I personally also have to at least give a passing mention to using exercise as medicine - at least to some degree. Working out will never make a person with TS be neurotypical, but it IS a great way to redirect tic energy immediately, in the moment, without suppression having to be any sort of intermediary step. It also can provide focused concentration, which many people find provides natural temporary symptom relief. Some people also find at least some degree of reduced tic frequency or intensity for a short time post-exercise. I’ve definitely found this to be true for myself. Since realizing the benefit I get, I have been increasingly protective over my gym time in the face of business and the pressure to skip to get other things done. Giving my body the movement it needs is my medicine, and viewing it this way allows me to prioritize it properly.
Ultimately, how you choose to manage Tourette Syndrome is up to you. If you choose to suppress, that’s your call to make. However, don’t let outside pressure from anyone or anything make the call for you. And if you’re here because someone else in your life has TS, don’t push suppression onto them. Tics are neither the only nor the most important indicator of health in a person with TS. People with TS can seemingly stop ticcing but be very much not okay. They can tic a lot more and be happy and content. Sometimes, more tics are actually better.
So in conclusion: you're probably about to see me ticcing a lot more. And yeah, I'm more okay than I have been in a long, long time.
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