I remember very clearly the first event for people with Tourettes I ever attended. It was a Tourettes Action meeting held one evening in a hall in central London. Up until then I’d never met or spoken to anyone else with Tourettes, and the only people I’d seen with tics were on TV. I was really nervous and it’d taken me months to pluck up the courage to go.
The meeting itself was pretty standard and it’d be fair to say the content of the discussion wasn’t particularly riveting. But I was fascinated by the other people there – and their tics. There were men and women of all ages, some with barely noticeable tics, some with complex motor tics, and some with no evident tics at all.
One person particularly caught my attention, perhaps because she was shouting “Bomb!” loudly at regular intervals, but I suspect it was really because her tics seemed so similar to mine. It wasn’t so much the movements or noises she was making, more their intensity and frequency. I had a strong sense of what they would feel like to her, based on my own experience. I just wanted to watch her to see what I might look like from the outside. Seeing this I realised I’d never expect her to try and hold her tics in or feel embarrassed about them, so why did I expect that of myself? I came away from that meeting with a new-found acceptance of my tics – and with a new friend, Ruth, with whom I’ve shared countless adventures, giggles and ticced conversations ever since.
Meeting other people with Tourettes was the first step towards helping me feel comfortable with my own body and brain, and this has made my life infinitely better.
It wasn’t just me who benefitted from this first meeting – it was also Leftwing Idiot who went with me. In fact I wouldn’t have gone at all had he not given me a gentle push. He’s subsequently described how important this meeting was in helping him understand me better. He said afterwards that there were things about me he’d always assumed were just aspects of my personality, but was able to see how they were mirrored in other people with Tourettes. Leftwing Idiot’s supported me at every stage of my journey with Tourettes and I think that meeting other people with the condition has helped him understand it better than anything written about it, or any specialists’ explanation.
I clearly remember the journey to that first meeting, the worry about what would happen, how I’d feel, and who’d be there. I’ve heard similar fears described by many people I’ve met attending support groups or events for the first time. I’d avoided other people with Tourettes for years, before eventually going to this meeting, and consequently for all that time I missed out on the benefits of meeting other people with the condition.
So this post is for anybody thinking about going to their first group meeting or event. Here are some common questions and worries, with answers based on my own experience.
What will happen?
You’ll be made welcome. Everybody at the group will have been through similar experience to you at some point, and I’m pretty sure everyone remembers their first meeting as vividly as I do. There may be a mix of children and adults, or it may be for a specific group, but everybody will be wanting you to feel as comfortable as possible. There’ll usually be someone co-ordinating the sessions who’ll introduce you to other people and explain exactly what will be going on. Group meetings, whether big events or intimate gatherings, take lots of different forms: activities, talks, advice sessions, informal catch-ups, and so on. From my experience, exactly what’s happening or where doesn’t really matter: what’s most important is spending time with people who naturally understand what you’re experiencing.
What if being around other people with tics makes my child or me more ‘ticcy’?
That’s quite likely, lots of people’s tics do increase when they’re around others with Tourettes, but it’s fine to tic. No one will be surprised or pass judgement, and your tics are very likely to drop back to their usual levels quite quickly afterwards. Wherever possible go with the flow, but if you need to step out and have a break everyone will understand.
Will I or my child pick up new tics from other people at the group?
Tics can be suggestible so this may happen. Most people with Tourettes say that the benefits of meeting others with tics far outweigh the risk of picking up new ones. From my experience, any acquired tics tend to be short-lived.
What if I or my child laugh at other people’s tics?
Expect laughter. Tourettes meetings are usually a lot of fun and very funny. Shared laughter can be really powerful and nobody will expect you to remain straight-faced when you hear funny tics. Also, it’s understandable that you might be drawn to look at other people as they tic, as I was drawn to watch Ruth. These gatherings are safe and accepting. Don’t worry, just respond naturally, ask questions and laugh whenever you feel like it.
How can Tourettes events help people with the condition?
I’ve explained how meeting other people with Tourettes has helped me feel more accepting of my own tics. Events like this have also:
• Helped increase my knowledge and understanding of Tourettes
• Given me a time and space to reflect on my own experiences
• Triggered conversations with my friends and family
• Helped me develop ways of explaining and talking about my tics
• Provided practical advice, approaches and strategies
• Meant I feel that I’m part of a community that doesn’t face challenges alone
• Provided a place where I don’t stand out
• Given me loads of positive memories for times when things feel tougher
• Meant my life has been enriched by amazing friendships with people of all ages and backgrounds
I’m sure all this must be true for lots of people
I’ve never met an adult with Tourettes and I don’t know how this will make me feel
Some parents of children with Tourettes understandably find meeting an adult with tics a bit upsetting at first, probably because it can stir up worries about their child’s future. But I think most parents really value the opportunity to share experiences and get advice from people who may be able to offer insights into what their child’s feeling and experiencing. I know that meeting adult ticcers who lead happy and fulfilled lives can help reassure parents and ease fears for the future.
I’ve never met other children with Tourettes before and I’m worried my tics might scare them or their parents.
Everyone at a meet-up is likely to have direct experience of Tourettes and understand that tics are involuntary and not within your control. One of the great things about meeting other people with Tourettes is the informal conversations and questions that arise. If you have questions about someone else’s tics or you’re worried about the impact of your own, start a conversation ¬and don’t hold on to your worries.
My child, friend or partner isn’t sure about going. How strongly should I encourage them?
I wouldn’t have made it to my first Tourettes meeting if Leftwing Idiot hadn’t been a bit pushy about it. He recognised long before I did that feeling part of a community, learning from others and reflecting on my own experiences would help make me happier and more comfortable with my tics. You can’t force someone but you can:
• Discuss their worries and how likely they are to be well-founded
• Find practical solutions to specific problems where possible
• Talk about what some of the benefits of going may be
• Make a practical plan for how you will approach the day and how they can let you know if they’ve had enough
• Show them this post and reassure them that being nervous is normal
If your child or partner really doesn’t want to go it’s usually absolutely fine for you to go on your own if you want to.
Can I talk to someone who’ll be there, before I go?
Events and meet-ups usually have a group leader or coordinator who’s happy to talk through what’ll happen and discuss any worries you might have. You can also get in touch with me by email or give the Tourettes Action’s helpline a call.
What if it feels overwhelming when I get there?
At any event or meeting if you feel overwhelmed you can take a break. There’ll be people to talk to if you want to, and you can stay for just a little while, or for the whole meeting.
Our Next Event
In just under a month, on 12th April, Touretteshero and Tate Britain will be holding We Forgot The Lot! an inclusive, creative event for children and young people with Tourettes. Here’s a quick summary of what to expect from the day:
During We Forgot The Lot! Eleven artists will run different activities throughout Tate Britain, there will be a programme showing you what’s happening where and when. Children and young people will be able to choose and move freely between activities. These will be very diverse and include everything from a silent disco to costume making and from cardboard box sculpture making to playing hide and seek with the art.
There will also be a social area to sit and chat with other people, a talk by Tourettes specialist Dr Tara Murphy and a quiet chill out area for anyone who needs a break. All activities have transforming space as their theme. There will be lots of people on hand to help you have a good time.
If you’re thinking of coming but are feeling a bit nervous about it, get in touch. If you’ve got other questions, suggestions or tips, please post them below or drop me an email.
My first Tourettes meeting was unforgettable and I hope that for some people We Forgot The Lot! will offer the start of many great friendships, as well as increased acceptance and understanding.
You can download a flyer with more information here.