Episode 178: Tourette’s advocacy on TikTok – with Monica Nguyen

The episode transcript is below.

Carolyn Kiel: Before we get started with today’s episode, I want to play you a promo for a podcast I’ve been really enjoying lately called Psychocinematic. It’s an interview podcast hosted by psychologist Stephanie Fornasier. If you’re interested in media representation of neurodivergence, disability and mental health conditions, then definitely check it out – I think you’ll really enjoy it too! I’ll put a link to the podcast in the show notes. Here’s the promo.

Trailer for Psychocinematic begins:

Steph: Welcome to Psychocinematic, a podcast where we analyse depictions of mental illness and disability in popular film and TV.

Elise: “She assembled this wonderful team of empathetic and open and talented people and then she invited Dr Phil. *laughs*”

Merowyn: “Watching it was like a tsunami hitting me in the face in terms of seeing this deeply ingrained trauma, generational trauma.”

Nic: “When we were amoebas in the primordial soup, we were searching for carbon molecules to get high off of. So i think he’s *laugh* I think his intent is to say we are humans have the propensity to be addicted to stuff.”

Steph: Join psychologist and host Stephanie Fornasier and guests with lived experience as they dissect their favourite films and TV shows.

Ash: “I feel like identity crisis comes a lot with any type of disability or mental health, and I feel like in this movie, the whole movie’s an identity crisis.”

Jordan: “And of course it’s the extreme measures that get documented, and those stories absolutely need to be shared, but every story needs to be shared.”

Hannah: “I want people to understandable that disabled people, could be potential romantic partners. Disabled stories matter, disabled stories are interesting.”

Steph: Find us on Spotify, Apple Podcasts, and all good podcast apps. And subscribe to our Patreon, where you get access to bonus content.

Trailer for Psychocinematic ends.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for joining me today! I’ve got a great interview to share with you. It’s with Monica Nguyen, a 20-year-old disability advocate who lives in Sydney Australia. Monica began sharing her experiences online after facing a lot of discrimination from people who don’t understand her Tourette Syndrome.

We talk about what her life has been like with Tourette’s, as someone living in Australia who is part of a Vietnamese family. Monica also talks about the discrimination she’s faced because of her Tourette’s, including one incident at a train station that compelled her to start sharing her experiences with Tourette’s online, as well as the positive responses she’s received to the videos she creates. Her goal is to inspire, educate and empower.

Monica is also one of the approximately 10% of people with Tourette’s who has coprolalia (or copro-LAH-lia), which means that some of her verbal tics are obscene language. So I just wanted to let you know that you’ll hear some swear word tics on this episode, and give you some context for why. Unfortunately, there’s a lot of misconceptions out there about coprolalia. Monica talks about her experience with that in this episode as well.

If you like this episode, please share it with a friend or share it on your social media. If you want to hear more stories like this from neurodivergent people, please follow Beyond 6 Seconds in your favorite podcast app. You can also go to beyond6seconds.net and subscribe to my free newsletter to get early access to my latest episodes. If you’d like to help support this podcast, you can go to buymeacoffee.com/beyond6seconds – donate any amount and I’ll give you a shout-out on a future episode!

All of these will help the show grow and get these important stories out to a bigger audience. You can find all those links I just mentioned in the show notes of this episode.

And now, let’s get to my conversation with Monica! Monica, welcome to the podcast!

Monica Nguyen: Hi, thank you for having me.

Carolyn Kiel: Thanks so much for joining me today. When did you get diagnosed with Tourettes?

Monica Nguyen: So I was seven when I got diagnosed, and the actual diagnosis was a bit of an effort due to people not knowing what it was back then. So currently there’s a lot more awareness, but back then it took me like two years to get diagnosed. So originally when I got diagnosed, well, when I tried to get diagnosed, my GP actually diagnosed me with a cough.

Carolyn Kiel: Oh.

Monica Nguyen: Cause my tics sounded like a cough. So he’s like, “oh yeah, I’ll give a cough diagnosis.”

Carolyn Kiel: Interesting. Yeah, I’ve heard that a lot of tics do start off as like a cough or like a throat clearing or stuff like that.

Monica Nguyen: Yeah.

Carolyn Kiel: So yeah, I could see. Wow. Yeah, yeah.

Monica Nguyen: Or a blink or something. Yeah.

Carolyn Kiel: Yeah, yeah, exactly, exactly. So what was it like growing up with Tourettes? Like what was it like in school, like with family.

Monica Nguyen: Yeah. So with school, I kind of had to navigate you know, the kids and stuff. A lot of kids like kind of got it and kind of stood up for me, but there were some who didn’t get it. Another thing was a teacher, in my school, she was really discriminatory, but I was so new to it that I didn’t know it was discrimination looking back. So she would be like, “you are distracting me. Can you sit outside?” Or she would like bring chewing gum for me to like limit my tics, which we all know doesn’t work, but yeah.

With family, was kind of hard cuz of like cultural differences. There’s not much talk about Tourette’s in the Vietnamese community, so having to navigate that was super hard. And in like, second language kind of family, super hard. Like they didn’t know what was up. Yeah.

Carolyn Kiel: Yeah. So, yeah, I should mention that you, you live in Australia, you’ve grown up in Australia, but you’re from a Vietnamese family and that’s your culture. How is Tourette syndrome or I guess any, any type of disability like that viewed in like a Vietnamese culture or community in your experience?

Monica Nguyen: Um, honestly, it’s like very taboo. There’s no talk about it. When you say, like, when my mom says it to my family friends, people are still like, “what’s that?” Like, they haven’t heard of it. But I’m noticing more like Western cultures, not to say they’re better, but, um, like they just know straight away, like in public you’ll be like “Tourettes” and then they’re, “oh, got it.”

But like a Vietnamese person, like a lot of people I know tend to be, “oh, what’s that? Like, I’ve never heard of it.” But traveling back to Vietnam has been kind of like damaging for me cuz I’ll have tics and then they’ll say stuff. Like people will say stuff like they think they mean well, but it’s offensive. So they’ll say stuff like “she’s possessed. Like can we take her to the temple?” So it’s like that’s where like superstitious kind of values tie in. Like that sort of thing. Yeah.

Carolyn Kiel: Mm-hmm yeah. Yeah.

Monica Nguyen: And I think, yeah, there’s like, not much understanding at all. So I have had, had a lot of bad experiences traveling back. Not to like, you know, mind my language, but shit on my country.

Carolyn Kiel: Right.

Monica Nguyen: Yeah.

Carolyn Kiel: Yeah. Yeah. So it doesn’t sound like there’s really a lot of, well, representation of Tourettes or, or other neurodiversity in, in that culture so much.

Monica Nguyen: Yeah. Yeah.

Carolyn Kiel: So what was it like with your immediate family growing up in Australia? How did they react or manage when they found out the diagnosis?

Monica Nguyen: They, well, my mom didn’t know of course, and she’s still learning, like it counts, she learns like, like tries to learn, but it’s still like pretty hard in my opinion. Yeah.

Carolyn Kiel: Yeah. It’s a lot, but yeah, I mean, I guess it’s good that she’s trying to learn and you know, I guess there are more resources now about it in, you know, at least in some countries, I’m hoping.

Monica Nguyen: Yeah.

Carolyn Kiel: Well, I mean, what is your take on that? Like in, you know, living in Australia what’s been your experience with people and their, you know, understanding or lack of understanding of Tourette’s and what it really looks like?

Monica Nguyen: It’s been here and there. Like some people are amazing. They’re great. They get it off the bat. But some people like, like discrimination still exists. And I think we deny that it, it like happens. People are like, oh, that doesn’t happen. Or like, really? But it happens every day, like on the bus, on the train. That’s where I get most of my like PTSD from, like anxiety, because I’ve had to cop the most on public transport. But I feel when I arrive at a place, for example, a venue or a dance class, like that’s where it’s like normal. Does that make sense? Like people get it. It’s like the fear of the general public kind of. But I think like Australians pretty like chill with it. Like a lot of people pretty chill. But I think humor also ties in, so they’ll make like humorous comments that are offensive.

Carolyn Kiel: Mm.

Monica Nguyen: You know, the Aussie culture and like the whole joke thing. Like, “oh, I wish I had it, like, I could swear all the time.” Like that sort of thing.

Carolyn Kiel: Yeah.

Monica Nguyen: So it’s like, like, you know, the Aussie humor kind of ties in, but it’s like, offensive and people don’t know that.

Carolyn Kiel: Yeah. And that’s why, cause yeah, as you said, it’s probably people trying to be funny or trying to be somehow, I don’t know.

Monica Nguyen: Yeah.

Carolyn Kiel: Relating to you, but yeah. Otherwise it’s like really offensive. Like why would you, why would you say that?

Monica Nguyen: So yeah. It’s like not working. Like don’t.

Carolyn Kiel: Like in a situation like that, if someone, you know, should they even remark on your Tourette’s if they’re in a public place? Or like, what would you rather hear instead of those types of comments? Even if it’s like nothing at all from people.

Monica Nguyen: Literally nothing or, yeah. Or if someone’s curious, like, I love when people ask questions. When they’re like, Hey, if you don’t mind me asking, what’s it like? Or whatever, like, I don’t care. People are like, people are shy, like to do that, but it’s like, I love it. Like, ask me. Like, I love answering questions. But some people are not so open and that’s alright. It’s just like, don’t ask rude questions. Like people will straight off be like, “oh, like, I bet you can’t kiss someone.” Or like, “what’s having sex like?” Like straight off the bat. And it’s just like, like you wouldn’t ask someone that without Tourette’s, so why are you asking me? Yeah.

Carolyn Kiel: Yeah. Wow. That’s something. Yeah. You’ve probably heard almost everything at this point.

Monica Nguyen: Yeah. Yeah. But it’s also a fine line between not treating it as taboo too. So it’s like, ignore it, but don’t stigmatize it. Like there’s, there’s a fine line, but I think people are yet to learn that.

Carolyn Kiel: Mm-hmm. Mm. Yeah. Yeah, definitely.

So you’ve been sharing your experience more on social media, like particularly TikTok, about having Tourette’s and what it’s like, and what kind of experiences you have out and about in the world, and how people react. So what inspired you to really start sharing those experiences on social media?

Monica Nguyen: Okay, so a few years back, like before I really opened up about my Tourette’s, I would always watch YouTubers, just YouTube back then cuz TikTok wasn’t popular, but I would watch Jack Francis, just stuff like that, or like Tourette’s videos. Um, fuk, or later on when TikTok kinda exploded, I watched a girl named Evie. And yeah, like they just really inspired me. Like being able to see them and just watch them. I just felt like I could relate so much. So I was like, oh my God, I wanna do the same thing.

So I was talking to my therapist about it. I was like, I really wanna start documenting my experiences, but I’m shy. And she’s like, “just do it.” I was like, I’m scared of people being hateful. Because that’s the thing with, you know, content creation. And yeah, it took me a few years, but what happened was, I was discriminated against. It’s one of the top videos on my TikTok, like pinned. And I was just passionate to share it, on TikTok, to get it out there, the discrimination I had experienced. And that’s actually how my account started kind of blowing up. And then I’m like, Hey, people are following me. They’re interested. Why not just start posting more content and make the most of it? So something terrible happened, but I was able to channel it into something better. It sounds bad. Like, I don’t wish discrimination on anyone, but it was like a blessing in disguise.

Carolyn Kiel: Yeah. I’d love to learn more about that. Cuz I’ve, I’ve seen those videos cuz they are the top viewed on your TikTok. I feel like they take place either at the train station or on a bus or possibly both, both situations.

Monica Nguyen: Yeah.

Carolyn Kiel: So yeah. Tell me about that and how did you, you know, even come to document that while it was happening?

Monica Nguyen: So what happened was I was swearing out loud with my friend in a train station, and the woman turned around and she’s like, “Stop swearing.” And then I was like, kind of smart about it, and I turned and I said, “stop swearing,” like in her voice. And then the guy was like, “what’s the issue here?” And then I said, “the issue is, you just told me to stop swearing, and I have Tourette’s.” And then they’re like, “if you had Tourette’s, you wouldn’t be able to talk back,” or something. Like something just very ableist.

And then I went down to the station where they were again, and I just approached them and I said, “Hey, can I talk to you guys calmly?” I said, “I’m sorry for like mocking you, but like what you said just then wasn’t okay. Just cuz someone has a disability doesn’t mean they can’t talk back.” And she replied saying, sort of like, “why aren’t you swearing now?” And started to question my disability. She’s like, “you are being able to say this without swearing.” And then that’s like how it all started and yeah, I decided to document it cause it was just terrible. And yeah my friend was there. She was also documenting it. Because it’s discrimination.

Carolyn Kiel: Yeah. And I think that’s one of the things that people, for whatever reason, think of first, when they think of Tourette’s is coprolalia, which is the swearing, which I know only a certain percentage of people with Tourette’s have that. And I guess people have this sort of weird misconception that like, if you have a tic or really any kind of tic, that you tic all the time. So it, it is odd to hear those comments from people. It always stuns me when I hear people say stuff like that.

Monica Nguyen: Yeah. Like only 10% of people actually swear, but people think Tourette’s is just that swearing thing, because of media.

Carolyn Kiel: Yeah.

Monica Nguyen: Because the media profits off that. Like the only time they show it, like South Park for example, is a kid like swearing his head off and that’s the only thing people will know about Tourette’s.

Carolyn Kiel: Yeah.

Monica Nguyen: Which is super damaging. Because it hurts! Like it creates injuries. People struggle. It’s not just funny swearing, you know? It’s like sensationalized.

Carolyn Kiel: Yeah. And going back to one of the comments you mentioned about someone saying, like jokingly saying to you, like, oh, I wish I could talk like that all the time! It’s just a very strange reaction and just, just based on so much misconception about Tourette’s.

Monica Nguyen: Yeah. And it’s like, you would never come up to someone in a wheelchair or a deaf person and say, like, “I wish I had a wheelchair. “Or like, “I wish I was deaf,” you know? So it’s like, what makes it okay for you to say it to someone with Tourette’s? I personally think it’s one of the most misunderstood disabilities.

Carolyn Kiel: Yeah. Yeah, absolutely.

So that video that wound up getting a lot of views and went viral. Was that one of your earlier videos or had you been creating videos before that?

Monica Nguyen: So that was the first ever video. I just had a random TikTok where I had fun with it and just was watching videos, but that was the first ever video. And then that kind of got traction. And then it drove me to spread my story and share like my everyday life, cuz I was like, I can’t miss this opportunity.

And, it’s been such a great thing because before starting, I thought I would get a lot of hate for it. But it’s like my safe space. It sounds so weird, like, when you say TikTok’s your safe space! But there’s a community on there and they’re like so lovely. And I’ve had little kids email me and ask for advice and wanna talk to me for their high school project. And it like warms my heart. It’s so rewarding.

Carolyn Kiel: Oh, that’s awesome. Yeah. Yeah. Cuz TikTok can be a difficult place, especially with some Tourette’s advocates getting sometimes unfortunately get a lot of hate. So that’s awesome that you’ve been getting so much of a great reaction from people there.

Monica Nguyen: Yeah. There is definitely hate though. Last week I was really impacted kind of, because a subreddit was posted about me.

Carolyn Kiel: Oh!

Monica Nguyen: There’s a subreddit called fake disorder cringe. And someone posted me getting my hair cut, like a video of me getting my hair cut, and then people were analyzing how it was like fake. So that was, it kind of caught me.

Carolyn Kiel: Oh yeah. That’s what a lot of the trolling is, from discussions I’ve had with other content creators who have Tourette’s, there’s a lot of accusations of faking and stuff like that. So, which is just so damaging. And I don’t quite understand that.

How do you deal with trolls if they come into your comments or things like that?

Monica Nguyen: I had to like kind of navigate that, personally. I see it all, like creators see it all. People think we don’t, but we see it all. I had to reach out to a few creators and the best advice they gave was just block, get ’em out. And like, it has helped because you kind of fixate on the comments sometimes. Personally for me, just blocking and getting them out of the way is really good.

Carolyn Kiel: Yeah, definitely. Yeah. It’s a satisfying feeling to block people who are strangers and just there to make trouble and say nasty things. So, yeah.

Monica Nguyen: Yeah. And also you’re like not taking it, like kind of coming from a place of love.

Carolyn Kiel: Yeah.

Monica Nguyen: Because I’ve kind of developed the mindset where it’s like, this person’s probably really sad or insecure. Because you have to be pretty hateful inside to send that to someone. It’s like, I could never do that. So I send them love, if anything. It’s like, I send you healing.

Carolyn Kiel: Exactly, yeah. It’s like, why are you taking the time out of your day to find this and then craft this nasty comment and post it? Yeah. You’re right.

So what other types of videos do you post on TikTok about your life?

Monica Nguyen: So I do everyday life. Or like, like just little mukbangs. So mukbang is an eating show.

Carolyn Kiel: Oh!

Monica Nguyen: So I love watching, like Korean eating videos! Like where they just eat yummy foods. Cuz you get hungry and it’s just so entertaining to watch. And yeah, videos of me like eating or roller skating or like everyday life. I’ve started to do like more vlogs. So I don’t wanna just be Tourette’s content. Cause that’s what many Tourette’s creator say like, I wish more Tourette’s creators just did other content like everyday life. Because it’s not all about Tourette’s, you know? Like that’s only one tiny bit of me. And I wanna show the whole multitude, if that makes sense. Yeah.

Carolyn Kiel: Yeah. It’s like your life experiences so that people can see what it’s, what it’s like there. Yeah.

Monica Nguyen: Yeah. And I’ve also posted one recently of me speaking Vietnamese and explaining my Tourette’s.

Carolyn Kiel: Wow!

Monica Nguyen: Just to create conversation. Because there’s like, no talk.

Carolyn Kiel: Yeah, that’s really awesome.

Monica Nguyen: Thank you.

Carolyn Kiel: Because that just will expand, you know, it expands your message to a potentially a lot of other people who don’t really have another source of good information about what Tourette’s is really like.

Monica Nguyen: Yeah. A hundred percent.

Carolyn Kiel: Awesome. Awesome.

What are your goals for your Tourette’s advocacy through social media? Like what other things do you want to achieve by sharing your experiences?

Monica Nguyen: Honestly, just to help educate, empower, as you stated. Just, you know, having someone watch a video and learn something means so much to me. I don’t know how to word it, but helping those with Tourette’s in the future. So, if someone’s watched my video on bus discrimination and seen me say like, step in and talk, ask the person if they’re okay. I hope that they can incorporate that if they come across another situation like that.

Carolyn Kiel: Yeah.

Monica Nguyen: So channeling my experiences to make a difference. I can’t ensure it doesn’t happen again, but having some impact that it doesn’t happen again to the next person with Tourette’s.

Carolyn Kiel: That’s really great. I know you share a lot of your experiences and building your community online, but in Australia or in Sydney, like your local area, is there a local community of Tourette’s advocates that you connect with?

Monica Nguyen: Yeah. Yeah. So there’s the Tourette’s Association of Australia.

Carolyn Kiel: Mm-hmm.

Monica Nguyen: They run like fun camps and stuff, but I’ve never personally been.

Carolyn Kiel: Mm-hmm.

Monica Nguyen: But there’s like a Facebook group that’s super, super helpful. People post things. And we like give advice and share our lived experiences, which is lovely and great to have.

Carolyn Kiel: Yeah, that’s awesome. Yeah. It’s good to have that blend of sort of online community and then offline, like real life community as well. So that’s really cool.

Well, Monica, how can people find your online content so they can learn more about, you know, what you share and your Tourette’s advocacy?

Monica Nguyen: Yeah. My TikTok is at meowmons, M E O W M O N S. And my Instagram is at ticswithmon. So T I C S W I T H M O N. So I post other stuff there where I kind of write more than do video content.

Carolyn Kiel: Okay. Very cool. I’ll put links to those in the show notes so people can click on them and get there from there.

Monica Nguyen: Thank you for chatting!

Carolyn Kiel: Yeah, Monica, as we close out, is there anything else that you want our listeners to know or anything they can help or support you with?

Monica Nguyen: Honestly just have a openness to learn and understand people and be aware of people’s differences. That’s the best thing you can do. And like, honestly, basic human kindness. Just always be kind and loving. Put yourself in people’s shoes.

Carolyn Kiel: Great words of wisdom to remember for all situations. Awesome. Yeah. Well, thanks so much Monica, for being on the podcast. It was great talking with you.

Monica Nguyen: Thank you for having me. Have a great day.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time.