As part of Tourette's Awareness Month, our wonderful young member, Jenna Hughes, has written this fabulous article about her own journey with Tourette's. Thank you so much Jenna!
Jerking, flailing, shouting, swearing.
I am not sure what others know about Tourette’s Syndrome, but this can’t even be considered the tip of this infuriating iceberg. For me, starting from strange impulses to tap the table, to jerking my shoulders upwards, to hour long episodes where I cannot control my constantly moving body, has been a difficult ride. My experience cannot be compared to others like myself, as we have all experienced this differently, but I hope that with what I have to share, it can encourage not only the general people to be more open minded and accepting of this condition, but to tell those with Tourette’s to also accept themselves.
Tourette’s is a neurological condition – a disorder in the brain and nervous system. It causes the individual to perform both physical and verbal actions not within their control; we call these ‘tics’. There are many tic disorders, but to be diagnosed with Tourette’s, one must display both verbal and motor tics for more than a year. This is a basic introduction to what this disorder is, but I promise you, it isn’t as simple as that.
My story started in June of 2018, just as we had started the new S2 timetables before the school year ended. I am unsure if it was this change that triggered the following events, but after four and a half years of having this condition, I can confirm that stress and anxiety makes it so much worse. I don’t know when exactly it started though, June is simply when things began to get concerning. At first, it was only a strong desire to tap things – I could ignore it. But soon enough, this turned into larger actions that I couldn’t control, such as throwing things, hitting, and jerking my head and shoulders.
I was afraid and confused - this had never happened to me before and the physical and mental discomfort I experienced when I abstained from following these impulses became a sensation I began to fear. All I can think to compare it to is a strange force whispering in my ear to do these things, or as if something had decided to possess me and was forcibly trying to take control. Even now, if I were to ignore or suppress the tics, an ungodly and painful sensation is felt in my back as if something were being forcefully contained. However, the tics must eventually come out, so similar to when you hold a ball under the water, the deeper you push it under, the more forceful its impact when it finally reaches the surface.
Our knowledge of Tourette’s is limited, not because there is no research into it, but because the condition is in a part of the brain that we can’t easily study or access. Though, it is thought to be a combination of the basal ganglia, the frontal lobe, the cortex and various neurotransmitters (such as dopamine, serotonin and norepinephrine). We also don’t know the cause for Tourette’s but, again, it is though that it is a hereditary gene, with a 50-50 chance of it being passed down to offspring. It has been observed, however, that boys are 3x more likely to display symptoms of Tourette’s and that the estimated number of individuals with Tourette’s is probably double that of what has been diagnosed.
As I previously stated, we don’t know much about Tourette’s, or, generally, tic disorders, but that shouldn’t stop us from spreading awareness of it. I have read and listened to many stories of bullying due to having this condition, and I myself am not exempt from those stories. I was often bullied throughout Primary, mostly just teasing and exclusion. But when I entered S1, light physical bullying began as well. This caused for low self-esteem and insecurities, so when I first started having motor tics, the eventual bullying contributed to my receding from society and isolation that had already started to manifest due to my own fears and lack of understanding to what was happening to me.
I was often called out in front of crowds and told to “stop doing that” and “why can’t you just stop” while I was being stared and laughed at. Others would also get my attention and perform their small-minded imitation of Tourette’s – by swearing and doing rude hand gestures. Mentioning this, I want to bring up a term special for this kind of tic – it is called Coprolalia; a tic that makes the individual say profanities and rude words. I also have this type of tic; however, I will state that it is only 10% of people with Tourette’s that will have this tic. I find it ironic that this is the only impression some people have of Tourette’s.
Sadly, the response from others towards my tics is not a rare occurrence. It is what often happens and is why most individuals with Tourette’s suffer from depression and anxiety. You will also see people who isolate themselves, not being able to go to school or even outside. I was also like this, begging to be home schooled and barely leaving the house out of fear and discomfort.
But personally, I feel that all the things I have previously mentioned aren’t as bad as what we call “Tic attacks”. These are episodes of basically a tic explosion, where you constantly tic for a period of time, unable to control your body at all. Everyone experiences tic attacks differently, but for me, it is a nightmare. As previously mentioned, I experience long periods (up to an hour or two) of constant tics throughout my entire body. I cannot control my body and I cannot control when this happens. It is a difficult thing to describe, but I feel the frustration may be similar to walking through a door, only to end up in the same hallway, in a constant loop, wanting to escape so desperately, but unable to. No matter if I am mentally or physically exhausted, I can’t stop. But what destroys me the most is that my tics are particularly destructive and violent in terms of harming both myself and others. I am constantly hitting, kicking, moving. I am constantly screaming vulgarities and dangerous statements, and to top it all off, they try desperately to physically harm me by banging my head against any hard object, biting, and scratching. Lately, it has gotten to the point of my tics attempting to bite others as well.
These things are and have been incredibly difficult to handle, and although I want to get across how damaging this condition is, I also want to show the funny side of it all. It is a personal preference that my tics are treated with jest. My way of coping is by seeing the funny side of it all. I have really frequent tics I like to call “conversational tics”. Basically, my tics react to what is happening or is said around me, such as stating the obvious when someone mentions something, or vehemently insisting or denying something absolutely ridiculous. They have also attached ‘nicknames’ to various people, such as family members and familiar teachers. Though, I will mention that most of these are pejoratives, of which my mother gets slandered the most. In turn, the teachers and people around me react and converse with my tics as well, laughing ALONG with me, and not AT me. And I find this the most comforting way to handle my tics.
I really am truly happy that I decided to come back to school, and that I have been surrounded by support and care. I have also been lucky enough to have a mother that doesn’t bat an eye at the amount of insults hurled her way, and the violent episodes she experiences at least once a day. I say I am lucky, and I am, because despite the difficulties I’ve experienced, I am still supported. Many others do not get this, and for some, their own families don’t even believe they really are suffering from this condition. To others, it may seem like silly movements and sounds done for attention, but it is truly tiring, taxing, and tenacious in taking control. It is physically and mentally painful, and can be horrendous to deal with during intense periods.
There needs to be more support for people with Tourette’s Syndrome, and more awareness and acceptance from the people too. Just like any other condition, sincerity and care should be given instead of judgement and mockery. I earnestly implore that you look into Tourette’s a bit more, for, despite the difficulties, it is quite an interesting condition to know about, and further understanding will bring more awareness to the difficulties we face and how real this condition is.