'I am quite proud': TikTok star Evie Meg shares her experience of life with Tourette syndrome 

With 13m followers on TikTok, Evie Meg posts about life with Tourette syndrome. Now she is moving beyond social media with a book, writes Marjorie Brennan

Evie Meg: ‘There are days when I really don’t want to post anymore’

Social media star Evie Meg, aka This Trippy Hippie, has an audience that most writers can only dream of — she has almost 13m followers on TikTok and millions also watch her videos on YouTube, in which she posts about what it is like to live with Tourette syndrome. Now she is moving beyond social media to share her story in her book My Nonidentical Twin: What I’d Like You to Know about Living with Tourette’s. And even though she can reach millions across the globe with a tap or a swipe, she still relished the thrill of seeing her words in the slightly more old-fashioned medium of print.

“When I held the book for the first time, I did cry a little bit. It was so weird because for so many months I was looking at it on the screen but then I had it in my hands. It was really overwhelming but it was just the most amazing feeling. It will be so surreal to see it on the shelves, I am looking forward to going on a bit of a book hunt in different bookshops, that will be really cool.” she says.

As on TikTok, in the book, the 21-year-old, who lives with her family in northern England, is refreshingly open about the challenges of living with a disability and the other health challenges she faces while also educating people about Tourette’s — which is about much more than the outbursts of swearing (the scientific term is coprolalia) by which it is often characterised.

As Evie Meg explains in the book, Tourette’s is a neurological condition where the brain’s signals misfire and cause involuntary movements and sounds, called tics, which can be simple or complex. Simple examples include sniffing, blinking, grunting sounds and so on, while complex tics include repeating words or phrases, saying something in a different tone of voice or accent, jumping or biting. For Evie Meg, the condition manifested itself when she began to experience constant “hiccup” noises in adolescence. While our phone conversation is punctuated with the occasional verbal tic, including whoops and whistles, she is a fluent and engaging communicator, part of the reason for her huge appeal on social media.

Evie Meg has also been diagnosed with functional neurological disorder (FND) which can lead to temporary limb paralysis. Despite her health challenges, she didn’t think twice when she was approached to write the book.

“As soon as I saw the message, I didn’t actually believe it but once I had a proper chat with the publishing company, I realised that they were being serious and I said yes straight away.”

Evie Meg wanted the book to be informative but also a lifeline to people with Tourette’s.

“There is a lot in there for people who do have Tourette’s but there is also a lot about the science behind Tourette’s for people who don’t know much about it and why it happens. I just hope that people who don’t know much about it will finish the book and feel educated.”

Evie Meg’s life has been drastically affected by her disability — she had to forgo a promising future in gymnastics and also her hopes of becoming a teaching assistant. Instead, her time is spent on social media raising awareness around Tourette’s and fighting the stigma that surrounds it. She says she derives strength from the support she gets from her followers on social media.

“The messages and some of the lovely comments I get really make it worth it. People tell me I am really making a difference which means a lot to me because sometimes as a big creator you do feel a bit of pressure, like ‘am I doing the right thing, am I doing good enough’. But then I get really lovely comments, some are even from parents who have young children with Tourette’s saying that my videos have helped them understand their condition. I think it is really sweet I can make a difference like that.”

However, although she says negative comments are only a small part of the overall feedback, they do take their toll, especially when some people accuse her of faking her symptoms.

“It is so frustrating, especially with the FND, even some professionals don’t really believe it, which makes it so much harder to get help and to be listened too. It is scary because the symptoms of FND are so debilitating — there are times when I have gone to a professional about it and I have been turned away because they didn’t really know what to do with me. But with the hate comments online, it is mostly that I’m faking or there is a devil inside me or that I’m possessed. I’m quite good at seeing the funny side to it, that they don’t have a clue what they’re talking about, they don’t know anything about me or my life. I’m quite good at brushing it off. There are times when it has really got me down. My mum is really helpful in those situations because she will talk to me and help rationalise my thinking about it.”

While social media has helped sustain Evie Meg through many tough times, there are also occasions when she has considered taking a break, especially more recently when she was referenced in articles quoting research that TikTok, along with an increase in anxiety and depression, could be causing symptoms similar to Tourette syndrome among teenage girls in the US.

“I have been getting a lot of blame for the rise of tics in teenage girls. That is the main thing that makes me want to take a break from social media. There are days when I really don’t want to post anymore because of that, because I don’t feel like I’m doing much good. 

But I have almost 14m people reminding me that my videos are helpful and that I am doing a good thing. I try to focus on the really lovely people and that keeps me going. 

"It is more the fact that I have been named in some of the articles, what a crap thing to do to someone.”

Singer Billie Eilish also has Tourette syndrome and has spoken in the past about how she doesn’t want the condition to define who she is. While this is something Evie Meg can understand, she says she is proud of being associated with the condition.

“I know what she means. Obviously Billie Eilish is on a much bigger scale than me and I can see why she wouldn’t want to be known as the singer with Tourette’s, I totally get that. I would probably be the same if I was as big as Billie. But I’ve sort of done it in a different way, where I have based my job around raising awareness of my condition and I am quite proud of that.”

In terms of her ambitions for the future, Evie Meg says writing the book has opened up a whole new chapter in her life.

“I hope to continue what I’m doing and see where it takes me. Just having a book out has brought so many more opportunities. It is exciting to see what will come next. I’m hoping my book will help people for years to come.” While she is enjoying promoting the book, she is also aware of not overdoing things.

“Doing things like interviews can be a bit nerve-wracking because of my health. Sometimes, we set things up and we don’t know 100% that I’m going to be able to do it. That gets stressful because I really don’t like feeling like I’m falling behind. I just try to take care of myself and make sure that I’m rested and well enough. I don’t overload myself because I know it won’t end well.”

However, she is looking forward to getting out and meeting readers and fans, especially after the restrictions of lockdown.

“I am mostly really excited for the book signings because I have never really done a meet and greet before. For other creators online, it is a bit easier for them but when you have got a lot of health conditions, it is not that easy to go and meet lots of people. There is obviously the worry in the back of my mind about what if I have a seizure or what if my tics get really bad when I’m signing. With my Tourette’s as well, I worry about scribbling in people’s copies of my book,” she laughs.

“But they will be coming to the signings knowing I have Tourette’s, so hopefully they won’t mind too much.”

• My Nonidentical Twin, by Evie Meg, published by Sphere, is out now.