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The negative implications of tic suppression

Unfortunately I have seen so much dangerous misinformation on tic suppression spread around by organisations, websites, awareness pages and 'specialists'. I understand that everyone with Tourette's is different as it is a very complex and diverse neurological condition but for myself and the majority of the people in the TS community I have spoken to, Suppression is one of the most harmful things we can do and should never be encouraged.

Linking to my own personal experience, tic suppression caused extreme rebounds of tics and other symptoms later on. I used to subconsciously suppress in primary school due to an internalised fear of judgement and that caused my tics to flare up when I got home for hours, meaning that my home life was miserable and I had no free time to have a normal childhood - This rebound was directly caused by the suppression and it was not environmental as there was absolutely nothing wrong with the home environment, but unfortunately many parents face a lot of judgement which can cause this journey to be even more stressful for the whole family.

For me personally, Tic suppression along with my food dye sensitivity was one of my biggest rage attack triggers (rage attacks have enough stigma and ignorance around them themselves - they are not a behavioural, they are uncontrollable bouts of anger and distress). This of course caused me many issues and a lot of distress, but it also affected the whole family.

Tic suppression also drastically increased the premonitory urge and made it more unbearable so that it was uncomfortable, distressing and could sometimes even hurt. For me personally, even though the majority of my tics themselves were severe, I would say the premonitory urge was still one of the worst parts of having the condition as it’s one of the most uncomfortable sensations and can make it impossible to focus and if I tried to suppress vocal tics then it felt like I couldn't breathe and with the motor urges it would feel as if there was something crawling or stuck to my skin or insides, not to mention the phantom tics (out of body sensations).

For some people the rebound of tics can cause injuries and pain due to the severity of the involuntary explosions therefore can be very dangerous. Tics don't just stop, you cannot 'learn' how to stop them although certain management strategies can sometimes work for some people. Tics that are suppressed still need to come out, they don't go away, and the outbursts and premonitory urges are absolutely awful. If I use an analogy, imagine that there is a fizzy can, when you are suppressing the tics, the can is closed but it is being shaken so all of the tics are bubbling up inside which creates pressure, but when we get to a comfortable environment all those tics come out even worse like they did before, like a fizzy drink spurting out of a can that was shaken right before it had been opened.

Tic suppression can also trigger many other symptoms for different people including tic attacks / tic fits, migraines, tension, increased anxiety and OCD, debilitating sensory tics and many more horrible symptoms and these outbursts can usually be avoided if we didn't suppress.

One of my family members who had motor tics and phantom tics as a child once started twitching their nose and said to me "you don't know how horrible this feels... Oh wait you probably do" but that goes to show that even tics that may look mild on the outside can still have have horrible urges and sensations so suppression usually isn't a good idea even for some people who's tics may seem milder as the urge can still cause distress and suppression makes it stronger.

Our mental health is also affected by Suppression as it lowers our self-esteem as we feel the need to hide our condition, implies that we should feel shame about our condition and who we are and makes us feel like an inconvenience as well as increases our self doubt.

Nobody deserves this.

I have absolutely no idea where this bogus misinformation is coming from, but I do know that it's a massive injustice to the Tourette's community, especially due to the fact that those of us with the condition who share our experiences are censored and shut down by 'specialists' who have absolutely no idea what it's like to live with the condition.

I aim to be the person I needed as a kid, and as a child I feel that it would have been so life changing and freeing to know that I didn't need to suppress it as it was wrecking both my mental and physical health. Even though something may be said by an organisation or doctor, doesn't mean it's right. We all need to be our own advocates and share our stories so that the truth is one day accepted again, and you should always question anything that doesn't resonate with your experiences as you will never fully understand it unless you either have it yourself or are a parent positively advocating for your child, you as a person with TS and any Tourette parents out there know what you or your child go through 24/7 so don't allow someone who has not even experienced anything in your life tell you what to do or how to raise your child - you know yourself best. It’s heart-breaking to me that people feel like ‘rebels’ because they are unable to suppress their tics.

To put it quite frankly, it outrages me to see all this misinformation around as it has so many negative implications on people's lives and nobody deserves to suffer. Tic suppression should never be encouraged and nobody should be asked to suppress, in fact people should be reassured that they can tic loud and proud so that we can accept ourselves and become empowered to speak our truth as we embrace who we are instead of feel shame for it- nobody should ever have to feel ashamed of having Tourette's and it takes years to unlearn suppression as it is so hard to let go of that anxiety. I really wish I knew what we could do to stop this misinformation spreading, but unfortunately it's going further and further like a wildfire, damaging so many people's lives.

As I said before, everyone with Tourette's is different, but I do know that there are others out there like myself who know that suppression is a massive harm (most of the Tourette's community that I have spoken to), and even if I didn't meet anyone out there like myself, I would still speak the truth as there is always someone out there going through the same thing who desperately needs to hear this and be aware of the misinformation that is plaguing the TS community.

Tic loud and proud 💙


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