In my last blog I talked about how I came about to be diagnosed with Tourette’s and a little of what it is like living with it, but I didn’t really talk much about Tourette’s itself and the symptoms I have to live with on a daily basis, so this blog is more about Tourette’s and my experience of it, rather than how I came to be diagnosed with it. As a disclaimer, this blog is about me and therefore this is my experience, just because you may know me personally or online and read this blog post, does not mean you then automatically know what everyones experience is with living with Tourette’s, this is my experience and mine only, someone elses experiences and symptoms, even though they have the same diagnosis, may be completely different.
If I asked the average person on the street to tell me the first thing that popped into their head when I say the word Tourette’s, I reckon that with about 8-9/10 people it will be something along the lines of swearing, people shouting and swearing. However, copralalia (the technical term for involuntary swearing or inappropriate language) is actually a lot less common than people think, only about 10% of people with Tourette’s have copralalia, however, it is what the majority of people obsess over and the media certainly make a massive thing of it. Yes I swear and say inappropriate things to the situation as part of my Tourette’s (from now on I’m going to write TS which means Tourette’s sysndrome, saves me writing Tourette’s each time!) but if you look at all of my symptoms related to TS it is actually a small part of it, although having said that it can cause me a great deal of distress, of which I shall talk about in a minute.
In the last week three people (one a stranger and two I’ve only know for a few weeks) have said things to me such as: ‘I wish I had TS’ ‘TS is funny’ ‘I’d much rather have TS than having xyz’ ‘It would be fun to have TS’ ‘I wish I could get away with swearing like that’
Now all of those things hit a nerve with me when said, I’m stood there thinking that they have no idea what TS is really about, how swearing is such a minor part really, how there are many other symptoms to TS and how it is so much more complex.
The main symptoms of TS are motor and vocal tics, to receive a diagnosis of TS you have to meet the criteria of multiple motor (movement) tics and at least one vocal tic and a vocal tic isn’t necessarily words, it can be sniffing, grunting, coughing etc. But along with these comes a lot of other symptoms and many common co-morbids. In mid January I saw a specialist in tic disorders who confirmed that I most definitely meet the criteria to be given a diagnosis of TS, he also said to me that the majority of people with TS he knows and through research have some form of obsessive compulsive behaviours, some people may have a diagnosis of OCD, while others, like myself may not, but most definitely do have obsessive compulsive behaviours. I have to do things certain numbers of times, I like the number 3 and 3×3, so 9, is especially good, I have little routines, I have an obsession with smelling virtually everything that I pick up or get given. What also comes with OCD and TS is intrusive thoughts, I get intrusive thoughts every hour of everyday, there is never really a moment where I am free of intrusive thoughts, some can be stronger than others, but they are pretty much always there. Because I not only get intrusive thoughts as part of my TS, but they also are a part of my mental health problems of borderline personality disorder, depression and anxiety, so I am plagued by intrusive thoughts and often I get images of the intrusive thoughts, so not only am I am having really distressing thoughts about myself or others getting hurt or dying, but I also see it happening, this is extremely distressing, I’m not going to give examples of some of my intrusive thoughts as they are rather gruesome and vivid and I don’t want to trigger anyone or cause any upset. But this is a daily thing for me, that often even sleep doesn’t give me an escape and my dreams can contain gruesome and vivid images and scenarios.
Earlier I said that the swearing part of my TS although relatively small when you look at TS as a whole can cause me a great deal of distress. Well, when I leave my front door I know that at least one person, normally many more will hear me swear or shout out a random word, whether they hear it once, or more often if they are on public transport with me. When it is strangers, they have no idea that I have TS and often walking past a stranger on the street is harder and more scary for me, than sitting on public transport with them for several minutes to an hour. If someone is sat on a train with me, for anything from 10 minutes to a few hours, they will hear and see me ticcing a lot and can probably have an educated guess that I have TS, however, if I walk past a stranger on the street and as I walk past them I shout out a random word, or swear at them, that is all they will hear, they may also see some motor tics, but they have a few seconds of me in their life and in that few seconds I may say something like ‘you’re a dickhead’ which has been a frequent tic of mine the last few weeks. They may think I am actually calling them a dickhead, they have no idea who I am and as they don’t see me for more than a few seonds, they don’t have that chance to see and hear me ticcing on a regular basis, so are probably less likely to make an educated guess that I could have TS. So I get terrified that someone will take what I say personally one day that they will start having a go at me, that it could even one day turn physical, if they genuinely think I have called them a dickhead.
I am terrified of leaving my flat, absolutely terrified, for many reasons, both mental health and TS related, but for this blog I’ll concentrate on the TS related things. Everytime I open my flat door, walk down the little corridor and to the door which leads to the outside my heart starts pounding, when with others I am a little less anxious, but still anxious, but on my own as I so often am I am terrified. I will put off leaving my flat for as long as I can and that can be not just hours, but days and weeks. So when you see me out and about, or at a group, or something, even me being there and having got there is a massive, massive deal for me. I’m not saying this because I want a medal or something or I want everyone to feel sorry for me, I don’t, I want people to realise that living with TS can be debilitating and can leave you isolated and feeling really anxious.
Having TS isn’t funny, it isn’t an excuse for me to swear or say inappropriate things, although it is a reason for them. Yes I’ll admit that I have laughed at myself because of my TS, sometimes a vocal tic can be really funny and I don’t know what will come out of my mouth, as much as the person next to me does, so what I say is just as new and random to me as it is to you and yes sometimes it is really random and really quite funny, so I will laugh at myself, but having TS and living with it on a monthly, weekly, hourly basis isn’t funny in the slighest. TS isn’t as some people say ‘the swearing condition’ it is a complex neurological condition with a very broad spectrum of symptoms, many of which are complex and debilitating, it also has a wide range of co-morbid conditions and the majority of people with TS, will have at least one co-morbid condition.
I personally think that TS is one of the most misunderstood medical conditions that there is, and the media can be blamed for a lot of that, the media focusses on the swearing aspect of TS and makes it a massive thing and makes it out that TS is all about that, when seriously, if you put all of my TS symptoms down the swearing is one symptom out of many symptoms and other tics, seriously there is more to TS than swearing.