In the last few months I have been diagnosed with Tourette’s syndrome, something I am sure to some came as a shock when I wrote a status about it on facebook, but something that to me is not a shock but something I have secretly suspected for many years, but not wanted to admit to myself or to others.
In this blog I want to talk a little about my past and how I came to be diagnosed with Tourette’s, but to also talk about what it is like on a daily basis living with what I believe is a much misunderstood condition.
I have had tics (tics is a sudden, repeitive motor movement or vocalisation) since I was about 8/9, it started with me randomly opening and closing my mouth, I would do this movement randomly and without reason. I only remember this because I remember other pupils at primary school would call me a fish, because of the resemblance to fish of opening and closing their mouths. A few years later I also developed a twitch in my neck/head and therefore my head would rapidly move from side to side. Soon after this developed, my mouth and neck/head tics became another reason for others to bully me at school, the bullying I received at school was already severe and nasty and I did anything to try and stop or reduce it, so I did everything I could to stop myself from doing these tics. I now know that temporarily stopping a tic is called suppressing tics, eventually it will come out, it doesn’t stop it, but delays it. Suppressing a tic is like stopping yourself from blinking, you can hold it off for a while, but the longer you stop yourself from doing it, the harder it becomes and eventually you have to blink, well that is the same with suppressing a tic, eventually it will come out.
So as much as I could I suppressed my tics and yes suppressing a tic, for me anyway, can cause other problems, I get headaches, become very tense in my muscles which can cause pain and occasionally trapped nerves because of the muscle tension, it also makes me feel pretty shit mentally and takes a lot of my concentration and energy. But I was desperate to not get bullied, so at school and in front of others I did everything I could to suppress my tics. However, more and more tics were appearing, I at the time didn’t realise they were tics, I just thought I was odd/weird, I would do random movements, I would say words or phases randomly, I would repeat a word or phase others had just said (which is a symptom of Tourette’s) but I made sure I did my best to hide it all in front of others. My family though did notice my neck/head tic and worried for a while and talked to me about it and to them it seemed to disappear, little did they know that me knowing that they knew just meant I suppressed it in front of them.
Anyway, skip forward to early August 2014 and I went for one of my usual walks around the small local park just along from my block of flats. It was late, about 9.30pm, but obviously being summer still light, but there weren’t many people around. The whole walked consisted of me ticcing (this wasn’t a new thing for me, I had had days, when all I did was tic) but for some reason this one really affected me and I came back after about 45 minutes to my flat and I broke down in tears, I had a headache, not from suppressing tics, but from a tic which would basically be me hitting myself with my wrist/palm in the forehead repeatedly. I felt scared, lost, alone and very frightened. I did something though that I had never done before, I told a few select people about it. I went onto facebook and I told my best friend (who just so happens to now be my boyfriend, but that’s beside the point) and I posted in a secret facebook group which has a very few members in, all who are friends of mine. These 12 or so people were wonderful, so supportive and kind and believed me. Even though my boyfriend had seen me in real life many times and not seen my tics as I had suppressed them, he believed me.
I then felt brave enough to go on google and search tourettes and I came across a charity called Tourettes Action (which by the way is fantastic, if you want more info google them) they had a forum as part of their website and I posted on their about what had happened and the fact I had told a few people and they had suggested I try to tell my GP.
So I compiled a list of all of my current tics and I made a GP appointment, I was terrified that she wouldn’t believe me, but I went, I told her and she believed me, said she had seen me exhibit a few from my list, but had put it down to anxiety and said she would refer me to a neurologist. There was a bit of bother with my referral getting lost, but eventually I got an appointment in October and saw a neurologist, I was terrified and suppressed my vocal tics in front of him, but gave him the same list of tics my GP had seen. He said it was quite clear I have a tic disorder of some sort.
I left feeling mixed about the appointment, angry with myself for suppressing a lot of my tics on front of him, but pleased I had a recognised medical condition. A few days later I had a bad night with my tics, for about 2-3 hours I could not sit still or hold a conversation with my boyfriend as my tics were so bad, he filmed a few minutes of it so I had something to show professionals if I needed to.
A few weeks later I received a letter with an appointment with another neurologist, I saw him in mid December and this time I didn’t suppress my tics and although he said some features of my tics are unusual, I was diagnosed formally with Tourette’s.
Now I do my best not to suppress my tics, of course there are times when I have to suppress either them all or some of them. If I am at a concert or the theatre, I can not have vocal tics and neither can I have motor tics which are too obvious or distracting, so I suppress them, but otherwise in life I now live my life with daily tics.
What is it like living a life when you can be on a busy mode of transport, or in a busy shop or cafe and you shout out words (my vocal tics, currently consist of ‘chicken’, ‘fuck you’, ‘fuck off’ and sometimes ‘fuck a chicken’, they are my current most common ones, others occasionally creep in) or you put your middle finger up randomly at passing strangers, or cough, sniff, clear your throat to an annoying degree, or you rapidly move your arms, face, neck. It is hard, it is awkward, you get a hell of a lot of stares, you get laughed at, you get people taking the piss, you get people thinking you are just drunk and being stupid, you get people who don’t understand, people who judge you, you get asked to be quiet, to not swear in front of children, to stop moving so much, to stop being disruptive, people discuss you. If you try to explain people think you are taking the piss and using it as an excuse, or they don’t believe me because I haven’t sworn in front of them and they just think everyone with Tourette’s swears all the time (only about 10% of people with tourettes swear as a tic) I get scared that I’ll really offend someone, that someone will think I am being rude to them, I get scared that one day a racial or homophobic or transphobic or other really prejudice tic will come out (as tics change throughout your life) I don’t know what vocal tic will come out until it comes out, there is no control. I get scared that one day one of my motor tics will end up hitting or hurting someone, a stranger who doesn’t know about my tourettes and that I haven’t just decided to randomly hit them.
People take the piss out of Tourette’s as a condition and the people with it, because they think it is funny, when living with Tourette’s isn’t funny. Yes occasionally I will laugh at myself if a particularly funny tic comes out, I did laugh the first time I said ‘fuck a chicken’ but living every minute of every day not in control of your body is hard and distressing, hitting yourself repeatedly and causing bruises, isn’t funny, having a tic in your neck which causes it to yank itself backwards and want to keep going further than is possible and feeling like your head is going to snap off isn’t funny. But like with all my medical conditions which are hard and difficult to live with and yes there are days where I wish I didn’t have Tourette’s, but give me the option to permanently not have Tourette’s and I wouldn’t take it, why? Because having Tourette’s is part of who I am, it has been part of my life since I was 8/9, it has been there, even if hidden, it has caused me to have to rapidly gain more confidence when being out and about, and to learn to not give a shit about what others think of me.
I haven’t written this blog or explained why living with Tourette’s can be hard and is certainly not funny for pity or for people to feel sorry for me, but to let people know, to educate people, that maybe next time you laugh at that person who seems to be showing signs like they have Tourette’s maybe think what is it actually like to live with day in day out.