Over the last few weeks I’ve seen several posts on Facebook that have made me sad. They’ve been from people who have Tourettes themselves, or have a child with the condition, and they’ve related to comments or reactions from their friends and family.
I know from my own experiences how difficult it can be navigating changing tics and changing circumstances. This often puts pressure on the whole family, but can be most deeply felt by mums.
Here’s an open letter to any mother of a child with Tourettes who’s struggling to know how to respond or feel about it.
If you’re reading this then it’s quite likely that the strange and unpredictable force that is Tourettes has touched your life. This might be something you’re taking in your stride but it’s also perfectly normal if you’re struggling, if you feel unsure how to respond, or you just want things to be like they used to be.
I’d had very mild tics since childhood when most people never noticed them. But in my early twenties when they increased and had a bigger impact on my life I found things very difficult, and I know my mum did too. For a long time I thought ignoring my tics was the solution, so I pretended my body wasn’t changing, and so did my family. I felt increasingly isolated as a result. I avoided seeing the people I loved and I dreaded meeting people who knew me from stiller and quieter times.
Adapting to a new normal was a tough process, for my parents, my sister, my friends, and for me. Sometimes their support was perfectly pitched. They provided practical help, reassured me that we’d find a way through, learnt about the condition, listened when things were tough and laughed with me at funny tics.
But they didn’t always get it right. A few comments were really hurtful: “I don’t think you’re trying hard enough not to tic”, “Are you just doing it for attention?” or “It’s not you who suffers with Tourettes, it’s the rest of us.” I know they worried about me and about what other people would think. At times they probably felt embarrassed by other people’s reactions. I know I was.
It’s normal to get things wrong sometimes, to be unsure how to react and not to have all the answers. This probably feels incredibly difficult particularly if it’s your own child who’s struggling. But don’t let the fear of getting it wrong put you off supporting the person you love.
Sadly there’s no guidebook to life with Tourettes and everybody’s journey is different, but here are a few things that might be useful to think about:
• “Their tics used not to be this bad.” Tourettes is a changeable condition and tics go up and down in the course of someone’s life. The person you care about might tic more on some days than others. Commenting on this a lot, or trying to find reasons for why things might be better or worse, is unlikely to useful.
• “They don’t tic when I’m around.” Most people with Tourettes have some ability to suppress their tics for short periods. This varies from person to person and can take a great deal of effort and be very uncomfortable. Is your child in pain trying to avoid ticcing in front of you?
• “Why is this only happening to us?” Tourettes isn’t a rare condition and your family’s not alone. There are estimated to be over 300,000 people in the UK with Tourettes. Some people’s tics will be very mild and other people will behave in a way that makes them stand out. For many people tics are just the tip of the iceberg and there might be much more going on for them than you can see.
• “I’m doing my best to ignore it.” While ignoring tics can be a useful strategy, make sure you don’t ignore the person as well. Ask them how they’d like you to respond, rather than making assumptions.
• “I feel guilty.” Mums, it’s not your fault. The first question my mum asked me when I was diagnosed was ‘Did they say what caused it?’ Mum, I know you thought you were being subtle… but the fact that I tic isn’t your fault. Tourettes is believed to be an inherited condition, and studies suggest that the pattern of inheritance is complex and may relate to combinations of many genes.
• “They seem fine so it’s probably best not to mention anything.” Don’t assume that just because the person you care about seems ok that they don’t need your support, interest and understanding. Encourage them to share their experiences with you.
• “If only they’d try…” Wanting to help is natural and you may have come across possible treatments or approaches you want to discuss. Think about whether this is useful and reflect on how and when you pass it on.
• “I can tell they’re struggling but I don’t know what to say.” Empathy can be incredibly powerful. You don’t always need to have solutions. I remember very clearly the immense relief I felt when Leftwing Idiot once said “There are reasons for you to feel sad and worn down” – hearing this acknowledged out loud felt like a weight being lifted.
• “What can I to do to help?” Reflect on how you’d like people to respond if it was you. Not what you’d do yourself or even how you’d feel, but what would make you feel supported.
Tourettes is a strange and unpredictable condition, and aspects of it can feel very challenging. From everything I’ve read, seen, and learnt, the biggest factor in how well someone manages life with Tourettes doesn’t relate to the severity of their tics but to the quality of the support, understanding and acceptance they receive.
You can find out more about Tourettes on our FAQ page, and you can listen to some amazing, articulate young people explaining what they’d like you to know in the video below:
If you’re part of a family raising a child with Tourettes this post might be of particular interest.
Know that you and your family are part of a dynamic and warm community of people living with tics. You can reach out at any time through events, support groups, online networks or by getting in touch with me.
I’ve written this because I know travelling along this path can be very difficult.
As we head towards Christmas when families are coming together, make sure your child with Tourettes feels loved for who they are.
Wishing you and your family loads of happiness and laughter,
A week ago I shared my ‘Broadcast From Biscuit Land’ on BBC4 as part of ‘Live From Television Centre’ – it’s still available to watch here on iPlayer. My friends and family, watching in the audience and at home were at the forefront of my mind. As the tic-driven finale whirled around me, I thought about all the people who’d helped me get to that moment of incredible inclusivity. Together we’ve made it through some distressing times and I couldn’t have got there on my own.
Please feel free to share your own experiences and add your thoughts in the comments section below.