Interview with Scarlett Moffatt - Britain’s Tourette’s Mystery: Scarlett Moffatt Investigates

19 July 2022

Britain's in the midst of a mystery outbreak of Tourette's. But what's causing this explosion of tics? And why is it appearing out of the blue in young people? Tonight at 10pm on Channel 4, Scarlett Moffatt embarks on an investigation to uncover the potential causes of this medical phenomenon.

Here she tells us what we can expect from the programme.

Firstly, tell us about the documentary. It’s quite different to anything you’ve done before and a very personal journey for you.
It came about because basically when I was younger, I got sudden onset tics and we didn’t really know much about it. It was the late 90s/early noughties when I developed it and the only sort of Tourette’s that had been in the media at that point was the swearing attacks that we know. So when I went to the doctors with this, and other ailments, my mam and dad didn’t really quite understand what was going on and I remember that being quite a scary time not being able to control my own body. When I started seeing all these articles and TikToks about loads of young girls who were around my age when I got it, getting sudden onset tics, I just felt like it was something I wanted to investigate and luckily the telly powers that be allowed that to happen. I’m so pleased that I’ve done it, I feel like I’ve learned the most I’ve ever learned in TV making this documentary. Documentaries are hard!

Can you tell us about some of the people you meet across the series?
There are so many. This was the part I found most difficult about making the documentary – I’m a people person and I felt like me and the other influencers made friends. So having that rapport with them and still having to ask them difficult questions was where I really tested both myself and my presenting abilities.  There were so many amazing people. Holly was just unbelievable, Jodie, Nicole, Betsy – everyone had their own story in how this came about but the one common factor in it was COVID. I just wanted to hug everyone because you can tell the effect that COVID had on everyone. I feel like rightly so, during the pandemic, we were concentrating on the vulnerable and the elderly, but I actually think the children and teenagers were neglected in how they were feeling and how it actually affected them. I really felt that when I was talking to everyone.

You meet a psychiatrist and a neurologist, both experts in their field in regard to Tourette’s and tics. Can you tell us about some of the insights they gave you?
One of the things that I found absolutely fascinating was something Dr Chowdhury said. He said normally sudden onset tics is more prevalent in young boys but now, since the pandemic, we’re seeing it more in young girls, and one reason they think is that because young boys are frequently gaming which meant they were still busy, still socialising, still had a focus to get up in the morning and weren’t as stressed because they were having those interactions. I found that fascinating because I remember when I was young, you’d be told don’t go on your games too much because it’s bad for you and now it’s almost flipped. It’s just something I never thought I’d hear a professional doctor say, encouraging your children to game, so that was quite something. Also, just the fact, that in my own case as well, tics can just sort of disappear overnight. And how we don’t know that much about it even though so many people are affected by it. I felt like I went into the documentary having one question to answer and by the end, I had about fifty unanswered questions. No one really knows why it’s happening. 

It must have been a terrifying time for you when you started developing tics at the age of 12. How were you able to manage them?
I had Bell’s Palsy as well and I just felt really not all in control of my body.  I remember I would spend hours in front of the mirror screaming and trying to get my face straight or trying to make sure I wasn’t having facial tics. Adults around me would say things like ‘try not to do that’ and obviously now I realise I was suppressing them. As soon as I’d get home, they’d come out more because at school, I really tried to suppress them. I remember at the time feeling like you’re trying to hold hiccups in but you’re just like no, it’s going to come out. It was that sort of feeling. I remember just hoping that eventually they went. Being told it’s maybe to do with anxiety and stress – they might go, they might not and just that fear of not knowing. Normally when you go to the doctors, they say it’s fine, take this tablet and it will all go away so being told, we don’t know what will happen, that was the scariest part, not being in control.

It’s always incredibly refreshing to see you being so candid about your own mental health. Is that something that’s always been important to you?   
Yes, especially as I’m getting older as well. I just want to try and break the stigma around it because everyone has mental health but it’s just on a scale of zero to 100. Very rarely are people at zero but you could wake up one day and be a 20 and then another day, you could be an 80. It’s realising that can go up and down depending on the day. When I’ve been at times where I’ve been an 80, the big thing for me of why I was affected so much was feeling lonely, feeling like I was the only person feeling that and that there was no escaping it. Whereas when I would see other people talking about it, it made me feel less lonely. I just feel like if I can do that for one person the same way the Samaritans or other people did it for me, then I suppose I’m using the platform in a good way. I’m not saying I’m an angel or a saint, but I suppose the only thing that you can do when you have a big platform is try and use it for some good as well.

I love that you asked Holly the influencer whether it was okay to laugh at tics as many of us would do the same thing. What was the funniest thing someone said to you during filming?
I compare it to going to an intimate comedy show where the funniest parts are the bits that relate to you. We’re all big headed creatures really. I actually quite liked it when they took the mick out of me – I found that funny and I definitely got a thicker skin for it. But they all kept tic’ing that I was old! So now, I’m like am I old? Should I get more face cream?! But it was definitely funny because it brought us all closer together. When they saw I could laugh about myself, it put them at ease because initially they were a bit like oh no, what am I saying? But I was like, don’t worry, it’s not your fault and also, it’s funny!

Social media isn’t always helpful or positive, but it seems like the Tourette’s TikTok influencers you met are trying to channel it as a force for good. How was it meeting them?
I think the influencers are getting a bit of a tough time because some professionals are saying they could be adding to the problem. But, on the flipside, a lot of people and children feel segregated so by having these influencers talk about their problems and actually being able to message them personally and say I’m struggling with this is a nice support network. I just take my hat off to them, I think they’re all amazing.

Witnessing Ryan in the grip of a tic attack was obviously very distressing for all those present. It made me feel shocked that people would consider going to the lengths of faking tics. What was that experience like for you?
Honestly, that was probably one of the worst things that I’ve ever witnessed in my life because we just felt totally helpless – like there was nothing we could do. It was like seeing one of your friends – or anyone in pain – it’s awful and you just want to stop it. But there was nothing we could do, bar call emergency services.

We said to him a number of times that it’s fine if you don’t want us to show this, we are aware it’s a very personal thing, but he said he was actually pleased it happened. He thinks it’s important that people see that side of Tourette’s, that it’s not all funny verbal tics and facial tics, that it can hurt and it’s dangerous. He wanted people to see it too so the people that are faking on TikTok, with their faces covered, realise they’re actually being really disrespectful to somebody with an illness and that you shouldn’t do anything like that for likes. I’m pleased that Ryan has allowed us to show it because I think people will watch it and realise, oh, this is actually a serious illness.

Would you like to make more documentaries in future? Are there any subjects you’d be particularly interested in covering?
Loads! I feel like the list is endless. I really enjoyed making this one because it was close to my heart and I feel like when you can relate to people, they know that whenever you’re asking difficult questions, there is no malice in it and no pre-judgement because you’ve been there yourself. Later on in my career I’d like to tackle things that maybe haven’t affected me personally, but I think while I’m still becoming a newfound member of the Louis Theroux & Stacey Dooley club, I would like to focus on things I can relate to. All of this is a learning curve and making a documentary was much more difficult than I thought so I’ve still got some learning to do.

What do you hope viewers take away from the documentary?
I hope that people start conversations with their own children and teenagers about how the pandemic affected them. As I mentioned, I feel like they’ve sort of been left out of the equation and people have just assumed, oh they’ll be fine, they’re just kids, it won’t really affect them. But I think it really has, in every aspect of their life – be it social or school – I think they’ve missed out on a lot. So to openly start a conversation to check that they’re alright. And then, an understanding of Tourette’s and Tourette’s influencers so that the next time you’re flicking on TikTok, you realise that’s a person behind the screen and they’re smarter than just the Tourette’s.

Can you tell us what you’re up to next? You’re always so busy!
It’s quite good though, I like being busy. I’m doing a driving school show, I’ve just finished the first part of that and then later on in the year, we’ll be filming more and everyone actually taking their tests, me included… Mine and Scott’s BBC podcast just got a fifth series so we’re still going with that, series six of CelebAbility is on at the moment and lots of fun stuff really. I’m actually taking Christmas off this year – normally I do panto – but I feel like I haven’t had a Christmas at home for a long time so I’m going to have a Christmas at home this year. So lots of work, but also lots of play.

Britain’s Tourette’s Mystery: Scarlett Moffatt Investigates, tonight at 10pm on Channel 4 and All 4.

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