This post is the start of my new ‘Living with..’ series. This series will discuss what it is like to live with each of my conditions and first up we have Tourette Syndrome.

People are surprised when I say I have Tourette’s, sometimes shocked and at times horrified. I don’t look like I have Tourette’s but what is a person with Tourette’s supposed to look like? Are we supposed to walk around with a big billboard round our necks and a flashing arrow above our heads saying ‘I have Tourette’s look at me.’ The truth is I don’t want people to look at me like an exotic animal in a zoo; I want people to see me and not my condition.

My tics

My tics consist of pacing back and forth, arm and leg flailing, facial grimaces, throat clearing, body stiffening and hand twisting and shaking. Whilst I have Tourette’s I can hold in my tics and therefore very rarely do them in public. To do so though is draining, tiring and at times agonising as the beast in my chest fights to get out in times of stress and interestingly in times of pure excitement too.

For the record I do not swear, in the Tourette’s sense anyway and for all of you imagining that’s what I am doing right now I am sorry to disappoint you.

I have had Tourette’s for as long as I can remember but wasn’t diagnosed until I was 18. I am now 32 and have carried it into my adult life. I cant remember life without tics and I cant remember having a full day without needing to tic, it’s part of me, it’s who I am. I cant get away from it because it doesn’t matter where I go or what I do I have emotions and therefore I need to tic. I stand in a busy bus queue feeling anxious – I need to tic, I get frustrated by a rude shopper in an aisle in a shop – I need to tic, I feel happy finding a book I wanted to read in the library – I need to tic, then I get home and I feel excited watching an episode of my favourite tv programme so you guessed it – I need to tic. All day long the sensation in my body is there waiting to get out yet I suppress it. This is until the suppression doesn’t work anymore and I let it out sometimes for hours on end until I get relief before it starts all over again.

I never really noticed the impact Tourette’s has on my body not until I developed other unrelated multiple illnesses and realised how much my tics have an influence on how they operate too. Living with chronic illnesses my body gets extremely fatigued and needs to rest however my tics often make my fatigue worse from the impact ticking can have on my body. My chronic illnesses are also associated with muscle and joint issues again made worse by ticking because my body never fully relaxes and therefore is in a constant state of tension. Simultaneously my chronic illnesses impact my Tourette’s as if I am too unwell to tic effectively to the level I need I cannot eliminate the sensations in my body and I am therefore in a heightened state of unrest.

What I wish other people knew about Tourette’s

Whilst the physical nature of living with Tourette’s is tiring it can be the emotional side of living with such a condition that can be the hardest to deal with. The hardest being the assumption of others and what they think Tourette’s is.

The one thing I wish people would understand with Tourette’s is that not everybody shouts out and swears, of course there are people that do but the majority actually don’t. I don’t blame others for thinking that because the majority of media coverage focuses on that particular trait, maybe because it is such a unique symptom or maybe for the laughs at others expense who knows. However this isn’t a real enough representation of the Tourette’s community. The amount of times I have had people find out I have Tourette’s and the number one thing they can think to say is ‘so you swear all the time, go on do it now’ like I am some kind of circus performer. The other reaction I get is of embarrassment and exit scanning with people scrambling around for something to say or a way of getting away because all they can think is how it affects them. You’re embarrassed? I’m the one who has it and just to let you know continuing a conversation with me doesn’t mean you are going to catch it, it’s not a virus.

My advice to talking to someone who has Tourette’s or indeed any tic disorder is to just talk. Ask questions if you need to and get a better understanding rather than making assumptions. You may be surprised at what you learn.

Of course there are many, many people out there who are amazing and don’t bat an eyelid after finding out I am a ticker and although they don’t witness my tics they don’t judge me for it either way so for that I am extremely grateful.

What I wish I had known about Tourette’s

My tics are part of me and I honestly don’t think I would be me without them but I haven’t always felt this way. Growing up I felt embarrassed and almost ashamed, worrying what other people would think of me. As a result I learnt to hold my tics in regardless of the impact it had on my body. I wish I had understood back then what I know now and that is how unique having Tourette’s is. Living with such a condition has taught me how much strength I have mentally and emotionally which I can carry with me wherever I go and whatever I do. I am strong, I am determined but most of all I have Tourette Syndrome and am proud.

xx

Other instalments in the series are now available – click the conditions to learn more: PCOS, UCTD, Fibromyalgia, M.E/CFS and Mental Health.