Have you got hiccups?

Posted Thu 26th Oct 2023 at 15:18
by Danielle Cull

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Danielle opens up about her journey with TS.

Have you got hiccups?

‘Yes’, I say, again, with a sigh. I wish I did have hiccups; I wish what this was, was just a moment in time, that will pass after a couple of minutes. Trouble is, it will come back. Again, and again, and again. Until I’m worn out and close my eyes to have a well-earned break. I have often craved the feeling of stillness. How crazy is that?! The feeling of being still. To not have to worry about when the next moment will be, even though it will escape my body before I even have chance to catch it. Trouble is, if I did get the chance to catch it, it would just sit there, building up tension until I can finally release it. See, it’s a vicious cycle, one in which I have spent the last 9 years trying desperately to escape.  

Let’s talk about Tics. That word used to send me into a panic; I used to want to run a million miles at the thought of anyone thinking I had such a thing. Truth is, I do. I was diagnosed with a 'complex tic’ around  7 years ago, and only recently found out this is now classed as 'Tourettes'. People who are diagnosed with this can experience all different kinds of tics. Mine are mainly upper body and the noise of a hiccup. I used to always pick up habits when I was younger, however following a traumatic event, whilst I was dancing abroad, I developed upper body tics. A close friend once described my tics as 'the representation of all the hard times and how you've got through them'. I liked that.

I will never forget the moment I realised something was wrong. The choreographer turned to me and said, ‘what’s this?’ as he mimicked me. That feeling of embarrassment and wanting the floor to swallow me up is something I would learn to deal with daily.

When I returned home it went from bad to worse. It was no longer something I could hide, no longer something I could cover up and it was only a matter of time before someone at home would ask me what was going on. What do I say?! I didn’t understand what was going on, so how could I explain it to someone else?! All I knew was that I couldn’t control what was going on. And that was the worst part. It exhausts me, it's relentless at times and for some reason it chose me.

My mum & I had made a trip into Birmingham to go shopping. We were on our way back and my mum looked at me and said ‘Sweet, we need to get you some help’ I sobbed. ‘Why do I need help?! I don’t need any help’ I explained, and then I just shut down, as I always did. Could you blame me? Here I was, a 21-year-old girl who was hating how my body was responding to stress. I was tired, tired of suppressing something so much, even though I wasn't really suppressing anything at all, just making it worse.

Stress, we all go through stress, whether that be from not being able to find our phone, that is already in our hand, to feeling the natural pressures of life. Some people get irritated or angry, some people cry, some people hide it or some people tic! I don’t think I need to tell you which one I do?

‘Are you alright?’

‘Are you having a fit?’

‘Why did you do that?’

‘You’ve had hiccups all day!’

‘Would you like some water?’

These are just some of the questions or comments I receive. I won’t lie, it gets tiresome. Some people are genuinely concerned and that always restores my faith in humankind! However some people can be not so pleasant. I’ve had people mimic me in pubs, I’ve had people laugh, I’ve had people point as they’re telling their mate that the girl who is just trying to enjoy her wine is a little odd! I’ve had almost every reaction possible. See, what they don’t realise is that because of their stares, or comments, or even actions, they are quite literally, taking a little piece of me away with them. A piece of my confidence and replacing it with self-doubt. I, in the past, have tried my hardest to not let it take over me as a person, however every now and then, I won't lie to you, it has. I've felt that everything about me gets absorbed in it and that people only see the one thing about me. 

I went to the Barberry Hospital 2 years later. It took everything in me that day to go. But I went. Hands shaking, anxiety building, worried what the outcome would be. I saw a professor who deals with Neuropsychiatry. I sat down in front of him and took a deep breath. He, in 5 minutes, told me everything I was feeling, why I was feeling that way and that for once, it was okay. I looked at him with so much gratitude in my eyes, it was like someone had taken the weight that I had been carrying around for all these years and lifted it from me. "Thank you so much" I said through tears. Someone was looking at me, and not batting an eyelid. I will be forever in debt to him for making me feel that way, as he does time and time again when I see him for regular check-ups. It's always okay to ask for help. Sometimes, talking takes away the worry and solves the problem. Now I know that this will always be with me on some level, however it's about learning to cope with it and seeking the right help. All it takes is that one conversation to say ‘Hey, I'm not coping very well at the moment’ that will help so much, I can't even begin to tell you.

I am currently on medication until I can find an alternative way to calm them down and it eases the tics for me. I go for appointments at The Barberry still...and cry with relief after near enough every session. I remind myself of how lucky I am to have the most incredible support around me in my family and friends and in fact, I'd go as far as saying this is the most content I have been in a good while! I think the reason behind that is because, it may have taken me 9 years to get here, but I finally accept that I have something that's a little different. What's wrong with different anyway? So many people seek perfection, but who's perfect?! I don't know anyone! We all have our quirks, and that's what makes us who we are. I once said to someone close to me, ‘I don't want to embarrass you - I embarrass myself enough on a daily basis!’ She simply smiled and responded with ‘How could you embarrass me?!’ That's when I realised. The people who matter to you won't care if your hair is out of place or if your house is a mess and they won't care if you tic! As for the people who find the time to judge or mock, well, that's not my problem to solve any more.

Someone asked me the other day if I 'had hiccups' I smiled and said, no.

Watch Danielle deliver a brilliant 'Lunch and Learn' training session to colleagues at her workplace, resulting in a large donation to TA from her employer and a greater understanding of TS amongst her team.

WATCH THE PRESENTATION HERE

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