The truth about Tourette’s and Tiktok

TRANSCRIPT: Episode 60 - The truth about Tourette's and Tiktok (with Monica Nguyen)

August 23

Music Break 0:00

*Intro starts*

Mon 0:00

So I'm about to spill the tea in a very unhinged way.

Steph 0:00

Go for it

Mon 0:00

Umm.. So

Steph 0:00

Welcome to Psychocinematic, a podcast where we analyse depictions of mental illness and disability in popular film and TV. I'm your host, Stephanie Fornasier. If you love our podcast and want to give us some support, make sure you're following Psychocinematic podcast on Instagram, Tik Tok and Twitter. And check out our website Psychocinematicpodcast.com. For access to special bonus content episodes, Early Access, stickers and contribute to a regular fundraisers, join our Patreon starting from $3 with per month, you can be the coolest Psychocinematic listener there is.

Music Break 0:00

*intro finishes*

Steph 0:01

So I'd like to start the podcast today by acknowledging the traditional owners of the land that we're on today, which is the Wurundjeri people of the Kulin nation and pay respects to those elders past, present and future. And also acknowledge that I am on stolen land. And I'd like to welcome to the podcast, Monica, or Mon, do you prefer Mon?

Mon 0:24

Ah whatever's easiest. Mon's faster.

Steph 0:27

So Monica is a 21 year old disability advocate based in Sydney, who uses social media as a way to shed light upon Tourette's, as well as disability awareness and ableism. Thank you so much for coming on the show today, Mon.

Mon 0:43

Thanks for having me.

Steph 0:45

And I discovered you from a podcast that I absolutely love. Beyond six seconds with Carolyn Kiel, which is how I came across yourself and also your wonderful Tik Tok and social media. What was it like going on beyond six seconds?

Mon 1:00

Yeah, it was really fun. I reached out to Carolyn, because I saw it like, online too. And yeah, it was just like, I think my second podcast, it was really good to talk about and yeah, I just all about having fun. Yeah.

Steph 1:14

Fantastic. What was the first podcast that you went on?

Mon 1:17

It was my friends. Vivian. So it was like the Thriving Asian women. So she talks about like, Asian female experiences.

Steph 1:26

Oh, awesome.

Mon 1:27

Yeah. She just wanted me on for Tourette stuff.

Steph 1:28

Fantastic. I guess, firstly, tell me a little bit about the work you do in disability awareness. When did you start working in that sort of space.. advocating that space?

Mon 1:38

Yes. So um, it originally started off as I was discriminated against in Sydney. And it was like a random first video because I was like, I need to put this on tiktok, because at that time, like tiktok was exploding. And it was a way people were, like, spread, you know using it as like, easy traction. So the video like hit like 750,000, like to this day.

Steph 2:04

Woah

Mon 2:05

But yeah, as I posted that discrimination incident, it was like 300 or 500k. And people were like rushing to the account. So I was honestly like, I need to start making Tourette's content. Because for me, like, I've always wanted to make this content. Like I was talking to my therapist about it, but I was so insecure, literally, like being discriminated against was the reason why i started it.

Steph 2:29

so it's almost like a it's disappointing that that's how it started. But it's it's also been a really positive outcome. Do you think?

Mon 2:38

Yeah, like the biggest blessing in disguise? Like, it sounds so weird. But if it wasn't for that incident, I would not have this page. And like, more good has come out of it. Like we're here today.

Steph 2:49

And do you create content outside of of your advocacy? Like you're a Uni student? Is that right?

Mon 2:56

I was Yeah, I was studying a Bachelor of Arts, you know, being an artsy girl. But yeah, I do. Um, I do a food blog. So before that, I've had a social media background. So I guess that kind of branch into there. So I was, like, shoot, I was like doing photography and videography for like food businesses for like, the past three years. So that kind of gave me I guess that's a good question. I've never noticed that. Yeah, that's something

Steph 3:23

you're naturally good at. It sounds like. Great. So tell me a little bit. You, you have Tourette Syndrome. Do you mind telling me a little bit about what Tourette's is? Particularly from your perspective as well, because I am a psychologist. So I'm aware of what Tourette's is. And I've done a little bit of reading. But yeah, tell me from your words, what Tourette's is.

Mon 3:47

Yeah. So basically, it's a neurological condition that causes the person to have tics, and tics are repetitive movements and gestures that, you know, people do repeatedly. And tics are very complex. So yeah, basically, I like to think of it as a condition that makes you do like, literally, like, I hate this analogy. But technically you're like, possessed, like, I hate when other people say it, but it's like a good analogy.

Steph 4:17

It's beyond your control. Yeah,

Mon 4:19

yeah. It's like my evil twin. So it's like a second me that makes me do stuff that looks like me, but I'm actually not. And what does,

Steph 4:27

like tics are involuntary movements. Is there a difference in how often they occur? Is there any sort of, from what we know reason why they occur?

Mon 4:38

Yeah, yeah. So everyone is different. Right now, I would have, I don't know five to 10 tics a minute, but people can go days without checking. They can go weeks without taking anything. That's a misconception. Like a lot of creators will make a video and not tick and then people will jump on and question. Why aren't you ticing here like you're faking it, that sort of thing. But yeah, there is that, like difference?

Steph 5:03

Do we know why tics happen or if there's a neurological process that's responsible for it.

Mon 5:10

Um, for me, it is excitement, stress, even happiness, sadness. So it's very broad, but like, intense feelings or not being well rested. That's personal for me. But sometimes also, when I'm sad, I don't take on with the, like coprolalia, which is what 10% of people have, it's a swearing kick. With that is I read somewhere, sorry, excuse my wording. But in your brain, you have this bit that controls like social cues, and swearing and stuff like that. And I read somewhere that if you have corporate media, it's like that bit of the brain is more inflamed and leans up against the lobe responsible for social cues.

Steph 5:50

Oh, that's really interesting. I didn't know about that sort of scientific basis of it.

Mon 5:54

Yes, there's literally, yeah.

Steph 5:56

And that's interesting that you mentioned that 10% of people with Tourette's have coprolalia because, as we'll talk about later on, a lot of the representation in film and TV is often around the swearing particularly, and not a lot of the other sort of tics. Yeah. So when did when you first diagnosed with Tourette's? Do you mind sharing a bit of your diagnosis story?

Mon 6:20

Yeah, so I've had it since I was seven. But I wasn't diagnosed til nine. And the GP that I actually still see, funny story. He diagnosed me with a cough. So like, there was no awareness, back then. But um, my story is basically really interesting. I was at school with this girl, and we would hang out. She was like, my best friend back in the day would hang out, doing playdates and her mother actually went to high school with the president of the Tourettes association of Australia.

Steph 6:56

Oh, wow.

Mon 6:57

Back in the day, and she knew about tourettes and she she said to my mom, one time, she's like, I don't want to be like offensive or, you know, making assumptions. But um, my friend does this. And it looks like this, because I've seen it in her son's. So literally, that was how I was diagnosed.

Steph 7:13

That's incredible. So if you didn't have that friend, maybe it would have taken a lot longer to actually get the diagnosis.

Mon 7:20

Literally, it's like, everything happens for a reason, sort of thing. And yeah, like, um, I literally, um, yeah, we reached out to them got more info. And then I think we reached out to neurologists, and then we got a diagnosis. They knew straightaway, but like, even back then, man, the effort? Yeah.

Steph 7:38

Do you remember what was like when you were seven? What some of your tics were particularly that lead to your GP thinking was just a cough, which seems odd.

Mon 7:47

Yes. So I actually, weirdly enough have an ingrained memory of my first ever tic. Like, you know, when something traumatising or something happens in your childhood, I remember the feeling it was like rising from my chest coming up. And I had to make the sound it was like, boh! Boh! I was like, boh! I had to make this like boh! sound Boh! And um, yeah, it was like a popping sound. And I just had to explode. And a girl that day was like, can you stop doing that? Like, another girl Like, we were kids and I literally did not know what's happening. I was like, what is happening?

Steph 8:23

That would have been pretty scary as well at such a young age. Well, at any age really?

Mon 8:27

Yeah. But just more shocking, like, what like, excuse my language, but what the fuck is happening? So like,

Steph 8:34

once you were diagnosed, like what did was there any sort of? Did they discuss ways to, I guess support or treat the symptoms of Tourette's?

Mon 8:45

I don't remember, but it was more keeping me happy and not stress. And I ended up seeing a psychologist and then they, like introduced me to medication. There's also I think, CBT cognitive behaviour therapy. Yeah, so we did that. But let me tell you, it is hard.

Steph 9:06

What I'm interested to because I haven't really, in my career treated anyone with Tourette's, people who have tics, yes, but not Tourette Syndrome. Like what actually helped with the I guess managing it? And I guess my follow up to that is it is therapy or strategies given to stop the tics or just sort of manage them?

Mon 9:26

Yeah, um, personally, I can't speak on everyone. Everyone's very different. But for me personally CBT was not it. Like, it's very hard. Heaps of training, and it is so it's like suffocating nearly like it is hard to train yourself. So, for example, just for the viewers listening, sorry, just for the listeners who don't know what CBT is. I'm pretty sure it's when like they give you another thing to do is that...

Steph 9:56

there's I guess there's a lot of layers to CBT and I guess the therapeutic concept is to try to stop the kind of chain from your thoughts and feelings to lead to the behaviours. So one of those strategies could be trying to direct you to do something different to sort of change that pathway, I guess. Yeah, yeah.

Mon 10:17

So redirecting is a famous one. It's like, hey, instead of doing this, can you tap your phone instead? It is hard to learn. And because you're told, like, can you tap your foot, you're not going to want to, because he's basically doing what you shouldn't do kind of like that for me. I've done like, I've gone through a lot of different therapies, like I've seen different psychologists who have different approaches as one did mindfulness. But it got really gaslighty. Like, there are so many different approaches, like breathing, mindfulness, but not everything works personally. For me, I think it's finding the right person. Like my sort of therapy is honestly talking to someone about it and debriefing and being with my best state of mind. So I'm currently doing kinesiology and I, like I can't speak on others, but I prefer natural, like, the more natural route, so staying relaxed acupuncture, kinesiology helps me like getting into that, like, relaxed.

Steph 11:18

That's, that's really good to know. Because I think, I guess with anything, it's really what works for you. Like, often CBTs is applied to so many things. But it doesn't always work for everybody, even though it's probably the most this so much evidence that's been put into CBT. But it's, yeah, it's got its limitations. And it's also not for everyone as as is lots of therapy. So it's great that you found something that that that really works for you.

Yeah. And obviously, like, I can't speak on everyone else you but personally for me, like after being on meds for so long, I came off them. And like, personally, for me, that was the best decision I've made. Because the side effects, it makes me like a zombie personally for me, like, there is no actual medicine just for tourettes. Like there's different ones like blood pressure lowering ones or other things, but like they're prescribed on a different case to case basis. So let's say you can take Ritalin for ADHD, but if you have Tourette's, you can't because it's stimulant and it'll set your tics off.

Oh, that's and is that that's something that is an experience for yourself?

Mon 12:28

Yeah. So like, for example, for me, I could be given a script of Ritalin, but they said no, because I have Tourettes and he said that I can't do that. So it's very case to case. So

Steph 12:39

yeah, for sure.

Mon 12:41

Like when people ask like, is there a cure? Like it's offensive, you know? It's not that simple.

Steph 12:46

And I guess that leads to my next question, though, around like, wanting to cure or something like, is the end goal for your therapy and for any kind of, like treatment to stop tics? Or is it more to help you manage and have the best quality of life, having sort of space for those tics to be there, but not impact you as much

Mon 13:07

Honestly, it's management. Like for me, in my kinesiology, I'm literally exploring my shame, like, my deep rooted shame on when I tic and why I feel embarrassed. And being okay with that. Like, that is my cure and therapy. A lot of people ask me, or have you, like, found a cure? Have you seen a doctor? And it offends me because this is a lifelong thing. And I don't want to be depressing, and people are gonna disagree with me, but I think the biggest cure is being okay, that this is a lifelong thing.

Steph 13:40

100%

Mon 13:41

Because you can't get rid of some things and it's like, you have to sit with that. You know,

Steph 13:47

it's feels like the cure is really for society to be more accepting of all the neuro variances that we have. So because it sounds like like from your experience, the shame has been a really big thing to have to have to manage and the embarrassment, which isn't your fault, it's more the the context the society that you're in.

Mon 14:09

Exactly. And I've been like on holidays where no one has been hateful or events and everyone has been lovely. And it makes me think I'm like, I'm not the issue. Like this ableism that's the issue so it's like, why are we questioning cures for disabilities when it's like you know, you are the sickness you know in a way.

Steph 14:30

yeah. 100%

So I guess we've kind of already touched on this, but what what is it like navigating life with Tourette syndrome? And like what would you like people to know about life with Tourette

Mon 14:43

I'ma just be real. It is hard. It is hard, it is tiring. It is draining. It hurts. And I want people to know it's not a stupid punchline. Like if you have tried to it's so okay for you to joke about It I opinion, because you're reclaiming it, but others who want to use it as a punchline, like all threats that's so funny. Like, I wish I had it. Like, it's it's seriously not funny and I get all the time. Like, you get to say that that's so fun. If I had $1 for every time someone said that i'd be rich

Steph 15:19

That sounds like a very inappropriate thing to even say, or think.

Mon 15:23

I know, or like, Oh, like you can swear all the time and get away with it. That's so cool. It's like romanticising. sensationalising, like, we are so sick of it. It's not funny. It's very real. And it can wreck your life.

Steph 15:39

I guess out of that. You mentioned that you've been discriminant you were discriminated against and you made a Tik Tok video from that. What at first made you decide I'm going to put this on social media? I want to share this like what what was going? What was going on at the time for you?

Mon 15:56

Yes, sir. Um, basically, for me, like, I've always wanted to do it, I literally bought a camera. So back in the day, I literally bought a camera and I was vlogging. And watching the content today, I just finished high school. And I was doing a Tourettes tag. So it's always been like a dream of mine to be a YouTuber, or do some sort of video content. And literally, that's how it started. But that really gave me the push. I was just thinking it needs to be shown. This needs to be discussed. And yeah, like brought to light. Like, we can't just sweep this under the rug. So ever since then, I just started making content. But personally for me, yeah, like YouTube, like my ADHD could just not do it. Titok. It's like bite sized and easy to do that. So yeah, that's why I chose tiktok as part, well, I may use YouTube I've always wanted to, but my laptop is literally out of storage

Steph 16:55

And that's the problem with YouTube. It's not as easy to actually create, like, like, tiktok, you pick up your phone. You can make a tic toc so quickly, but YouTube is a whole different ballgame, I feel.

Mon 17:06

But yeah, just like seeing that there wasn't enough talk on it like, and being Asian to like an Asian content creator. Like I have people commenting and like, You're the first Asian I've seen with this. Because like, you know, there are people of colour out there. But like, it's just not shown. And I was like, this is a niche. I can go off being an Asian disabled content creator. Yeah, I

Steph 17:28

guess it's showing a side of that people don't usually say no. And they probably don't know much about of what it's like to be an Asian woman with Tourette syndrome as well.

Mon 17:40

Yeah, yeah.

Steph 17:41

So it sounds like it went gangbusters initially. Has that been all of the responses? Have you had a mixture of responses of your content?

Mon 17:52

Yeah. So this is surprising, but it started off way more positive than I thought. So I literally said to my therapist, back in the day, I was like, I want to do this, but I feel like I'm gonna have so much hate. And people were being so nice. And I was like, oh my god, tiktok's not so scary after all. Then the hate came in. So this is so hurtful, but I had a little subreddit made about me.

Steph 18:19

Oh, God

Mon 18:21

where, yeah, they. They literally made a subreddit about me on. It's this terrible. Reddit page. I'm not gonna mention it, because they were analysing how I was faking my tics. And it was just so hurtful, like, strangers, imagine strangers, like analysing like, watching the video you made and analysing it

Steph 18:44

That is disgusting. I can just imagine the the sort of discourse that would have gone on that is would have just been so completely offensive. Well, how did that impact you? That would have been awful.

Mon 18:57

Oh, it hurt. It burned. And I was like reaching out to the moderators, getting them to delete it, and stuff. But it's like some some things are better left unknown. Like, yeah, like some things you shouldn't look at. And it's like, it's always, there will always be haters. And it's true. It's like, I read this thing. It's like, if like, yeah, people who weren't successful in life, like they never had anyone just fully supporting them. Like people would have thought they were psycho or weird, or, you know, yeah, touching on the other comments. There have been hateful comments, like heaps. I have had to block people. I've had to turn off comments, like, just like, terrible comments, but I just feel like it makes you stronger and proves my point even more, because you've seen the videos like we're talking about ableism and people just say it and it just proves my point. So

Steph 19:50

I find that really interesting when the whole purpose of your content is to smash some of the stigma and to promote that this is real life. with Tourette's and how to actually support someone with Tourette's Syndrome and some of the the judgments that are made in trying to chat challenge that, and then when people take that, and then use that to continue to perpetuate that ableism it's like, well, thank you for just like making this even more of something that needs to be done.

Mon 20:19

Yeah. And it's like, I know, create, like, create stretch corners yet. So my child and tick tock like it's the most, it sounds weird, but in a way misinterpreted and hated disability. Like there's that and there's not that same amount of sympathy. Creators who've had like Daily Mail stuff written about him, like, eventually, and it's damaging, because all these creators out there are creating awareness, and then they just get shot, like in the foot.

Steph 20:46

It's awful. And Daily Mail is just.. piss.

Mon 20:49

disgusting yeah.

Steph 20:51

What would you advice then for any content creators, particularly around the disability and ableism sort of space? What, how best do you handle the backlash and the hateful comments,

Mon 21:05

My advice for content creators who get hate honestly, just do it. Be yourself. Don't let it stop you. Because if you're going to, like, it sounds harsh. But if you're going to be scared and let it stop you, you're never going to do it. There will always be people hating you, no matter what, like people. It's, you know, in our nature people will always judge you no matter what. And that's reality. And it's your choice, if you want to give them the power to get you. I don't know, that's harsh, but I think that's reality. And yeah, also hang it self care. Seriously, like no one, no one talks about the total content creation takes just like distance from it, turn your phone off, turn the notifications off. It's a lot, and no one. No one talks about that at all.

Steph 21:54

Yeah, yeah, you're absolutely right. Do you think it's better to engage with comments or just delete and block the comments?

Mon 22:01

Honestly, in the moment, I always engage. And like my humour is engaging with the like, a lot of my viewers I'm replying to it, because it's funny, but I know I shouldn't. Because it's like talking to a brick wall. Picking which ones because some of them. But yeah, honestly, block Delete. Also, it's like you coming here, it helps maybe to get up and walk.

Steph 22:29

That's the other amusing thing about it as long as and because you know, I am only a dabbler in Tik Tok. But there has been a few things that have gone really far. And there's been a lot of hatred, and it is sort of at a point where you go, Well, this is helpful for my engagement, but also a point where it's like, okay, this is impacting my day too much. I just need to like, turn off notifications for a while or just turn off comments. 100 Thank you for that. Has there been some really positive things that have come from creating tic toc content?

Yeah, definitely. No. more so than I thought, like when I had that hateful comment, I had like, kids, email me, or people email me and be like, I don't know how hard it is for you to walk down the park, for swearing, but I support you.

Mon 23:18

Oh, that's lovely.

Steph 23:19

I had a guy be like, you were the first guy I've written an email for and I'll remember it. Like, I never had like, another girl. I'm, like, halfway across the world. Reach out to me want to interview me for her school project.

Mon 23:34

Oh, wow. That's amazing.

Steph 23:36

Random people. Like, they'll reach out. I'm like a unique project. So it's so like, I just can't believe it. Because in year 12, I did society and culture. And I was reaching out to people and I was like, Can I write about you for my paper? You know, so it feels like being on the other side of that. Yeah, it's like so rewarding. And I've made friends online with Tourette's, which is like so nice. And like I've had people message and be like, like, you really like help me like your content helps me. And I think that overweighs, it's like the hate we were discussing.

Has it helped you in navigating your own life with Tourette's or managing your Tourette's?

Mon 24:17

Yeah, definitely. It's made me more bold and comfortable and knowing I have that safe space. Because before that, I didn't, I didn't have anyone to text or I felt alone. But now I do. I'm like, I know I have friends. I can message. And also, this sounds so weird, but there's been so many like work situations where I'll be able to first get work and they'll be like, Oh, I think I saw you somewhere. And then they'll be like, Oh, I saw your video. And I won't even need to explain myself. I kid you not that isn't the most satisfying thing. Like my account does explain.

Steph 24:56

Yeah, yeah. It's it's a good way to be able to point someone towards Something like, Oh, you want to know more about me? here.

Mon 25:03

Like, yeah, here's the link, don't don't ask.

Steph 25:06

You'll find all about it. That's awesome. I really think it's, it's been one of the best things about social media and how much it's particularly, you know, during COVID. And when we've been so disconnected from so many people was being being able to have those platforms to find each other people who get you and it's built some really amazing communities.

Mon 25:31

100%

Steph 25:32

So I just wanted to move on if it's okay to talk about some popular depictions of Tourette's in films. When I was kind of researching about today, I was kind of thinking about some movies with Tourette syndrome in there, and there's not many, the few that I've seen was Deuce Bigalow, male gigolo. There was a film Motherless Brooklyn that came out a few years back. And way a long time ago, Matchstick Men, which I haven't bothered, rewatching, because, you know, that's not really the purpose of today. What were your sort of thoughts? And is there anything else that you've seen that that you'd like to share around those depictions of Tourette's in like my popular cinema?

Mon 26:16

Yeah. So I saw the one you linked. I watched her I have never seen that. Let me tell you, I couldn't not finish watching that. I had to close it. It was so uncomfortable. And yeah, the thing basically, you know, just shows the guy ticking in there having a stage meeting. And everyone's looking.

Steph 26:36

So just to clarify, that was a scene from the movie, The Square, which is by I can't remember his name now. But he's the director of Triangle of Sadness that came out last year. I think it was. So yeah, it was the scene.

Mon 26:50

So yeah, I watched that scene. And yeah, I could not finish it. Because it was so uncomfortable. But it was also very true. Like, I have been on the receiving, I've been that guy who everyone turns out as depicted in that movie scene in a quiet room. And it is a very real an uncomfortable experience. But for them to cover in a humorous way and make fun of it. Really burns and I could not watch it. Like let me tell you brought up my PTSD.

Steph 27:20

Yeah, yeah, I'm sorry to have triggered you with that.

Mon 27:23

Oh no it's okay. Regarding Motherless Brooklyn actually, I actually watched that I went to the cinema for it

Steph 27:29

Oh, cool. What did you think of that one?

Mon 27:31

I think it was very good depiction. A lot of people were writing on it, how they were happy about the depictions. I don't remember fully, but I remember it was an offensive and just very, they approached it like calmly ticking here and there. And it was fine.

Steph 27:46

My memory didn't seem too super offensive. Although Edward Norton does not have Tourette Syndrome, obviously.

Mon 27:53

Yeah, I was gonna bring that up.

Steph 27:56

Sorry. *laughs*

Mon 27:56

Yeah, no, no, no, no. All good. Yeah, that was the other offensive thing. I hire actors with Tourettes to come on.

Steph 28:03

I feel like that's common. I don't think there's been anything I've come across where an actor with Tourette's is actually involved in the creation, although I don't know about The Square.

Mon 28:12

Yeah, or any disability like Sia, the autism thing. She got someone to act it out. It's like appropriation. Yeah. It's like, you know, how, you know, like White Chicks like how there's like blackface? Like, it's a funny movie, but nowadays would not be allowed due to that context. But it's like, why is this still going on with disability?

Steph 28:33

Yeah, it's really not much different. Exactly.

Mon 28:37

Yeah. Also, another thing I wanted to share was, this is really interesting, but one person said this to me recently that stuck out, she said, every villain in a movie has like a scar. is fat or or is disabled?

Steph 28:50

Mmhmm mmhmm. Yes.

Mon 28:51

That is so true. What is that ingraining into society?

Steph 28:55

Yes, we come across this a lot on this podcast and feeling trope and them having some sort of disability or being different in some way is so common and so frustrating. Definitely. One of the other films was Deuce Bigalow. I remember that was the first time I saw anything with Tourette's and there on screen. What was your experience? Have you seen Deuce Bigalow?

Mon 29:19

Um, I haven't. But was that the scene in the car? Um,

Steph 29:22

I think so. I think I actually think it was Amy Poehler

Mon 29:26

What the hell

Steph 29:27

Who has, he's so he's dating a bunch of different women. Then there are all sorts of women that struggle to find a partner that's, I have it's been a long time since I've watched it, but that's my memory of it. And one of the women that he dates has Tourette's syndrome. And it's a very humorous portrayal of it.

Mon 29:46

Yeah, honestly, disgusting. Like, literally as someone who has tics like that, and that allowed. It is disgusting to see like people making money and laughing qt that and it makes you insecure. You like if people are watching this all of the laughing at this? What do they think of me?

Steph 30:05

Yeah, yeah, exactly. It was definitely played as a joke, which is just very problematic in so many ways.

Mon 30:12

Disgusting. Yeah, that's all I have to say.

Steph 30:15

Have you seen any positive apart from Motherless Brooklyn not being too bad? Have you seen anything positive or appropriate?

Mon 30:22

Honestly, no. Apart from it's not a movie, but Lewis Capaldi Yes. And Billie, like they've come out about it. And like that some positivity, and I love to see it.

Steph 30:33

Yes, that's brilliant. It's, and that's something that happens very often when I feel like just neurological disorders or mental illness or disability in general, it's very still stigmatised to actually come out and talk about having, you know, being diagnosed with that. So that's good to see.

Mon 30:50

Yeah, and like, it's not surprising, but funnily enough, all the good depictions are like, tiktok creators. Yes. Yeah. are saying their own story.

Steph 31:01

100%. Well, maybe we should move on to that. This is a good segue. Tell me a little bit about Your, I guess there's a very big thing in the media or there has been in the last couple of years around social medias influence on tics or tic disorders. And I'm just curious, and what your thoughts around that have been and what what you think social media's role in it actually has been?

Mon 31:28

Yeah, so a lot of people touch on tiktok and it contributing to the rise of ticks. Tiktok as a whole. I call bullshit, tick tock, a lot causing neurological condition. And this is my take on it. I read a post about it, that really resonated. It's this thing called medical gaslighting. So Tourette's is very well known with boys and research, you know, with men in regard and they're blaming tiktok ticks, and you know, tick tock, contributing to the rise of you know, girls, because there is research, and they have nothing else to put it on. So that is my take. Second of all, I read this other article, this article said that we've literally just gone through a pandemic, very stressful time, people were isolated in their houses, there is more likeability of tics to increase, that side, like trauma and everything. We've just come out of a big traumatising pandemic. So yeah, we can't blame tiktok We can't blame social media. However, I do think social media has helped people build that awareness. People like, oh, there's been a rise in diagnosis. But what if people are just being more aware, with having the access. But also, another thing I want to touch on is it can lead to the romanticization and increase like you've seen with like OCD and ADHD, people are like select, oh, Tourette's is cool or ADHD is cool, or being neurodivergent is cool?

Steph 33:03

No. What are your thoughts on that? Because I know that that's happening with yeah neuro- divergence as a whole with people seeing themselves a lot more on social media with autism and ADHD, and that leading them to pursue a diagnosis of those disorders just as an example. But then there's, there's a lot of narrative around people thinking it's cool and wanting to get a diagnosis, because it's cool. And my response to that is always it's very hard to get a diagnosis. So considering that to be trendy is really diminishing all the obstacles and barriers there are to actually having that diagnosis, and also that it costs a lot of money. And yeah, what are your thoughts on? Like, there could be an element of that, that romanticization, as you say, where do you think that kind of fits in that?

Mon 33:49

Yeah. Regarding neurodivergence being cool. I'm on two sides. Heck, yeah, it is. Like, we are cool. It is something you should embrace. But it's the same of cultural appropriation. Appreciation, and appropriation is different. And that's what I feel. You can embrace like, you know, being gay, and that is cool. If you're gay, that's fine. But if you're not, you shouldn't step into that. And take it from others who are actually gay or neurodivergent. like they can pretend it's cool for a amount of time if they're not neurodivergent. But then the real stuff kicks in and they'll have to pay 300 in psychology fees. And yeah, they can see how like, cool it is. like, it's cool in an embracing way but like, you know, navigating the NDIS and getting ripped off and paying all this medical stuff is

Steph 34:49

as well as just you know, there's lots of coolness to bring your neurodivergent but it also has a real life impact on not the actual necessarily the diagnosis and the way that society accepts those conditions. So the actual impact to your well being and functioning is real. So I think that dismisses that people who think it's just trendy dismisses that aspect of it as well.

Mon 35:14

Yeah, like, it's only it's only cool for a bit until like, it hits you. And also, it takes away from real life experiences. It's like, some people can't even exit the house, how are you going to make? How are you going to make this attractive, make yourself like quirky,

Steph 35:29

like you're saying, with the perception that tics have or Tourette's diagnosis have increased, and it's social media's fault, I guess, quote, unquote, I did a little bit of my own deep dive into some research, which I sent to you. And it just, it's just very interesting, because I feel like there's two or three different narratives that that are out there online, there's: social media is to blame. And I don't, think that it was unfortunate that it was like some of the psychology blogs that were like, this is happening, all these girls are getting Tourette's and it's social media. And they're just, that's triggering them. And it's like, come on. And then there's also some research that's looked into it a little bit more deeply in saying that, well, actually, it's more common that these girls are being, and mostly girls, that are actually having what we call a functional neurological disorder, that is coming out in tics. And that isn't something that has just been created through social media. But it's more likely that because of everything that's been happening, like you say, COVID, that isolation, that stress that has increased a recorded rise in that functional neurological disorder coming out in tics. and what is a functional neurological disorder or fnd? An illness with a neurological basis. But that comes out. And it, we're still sort of learning a lot more about it, it comes out and physical and physiological symptoms and tics can be one of them. And when they actually looked at the presentation of the some of the teenagers who were presenting with these, there was a lot of underlying mental illness, anxiety, stress and functional symptoms that lead to the tic disorders. So there's some reporting saying it's Tourette's. And there's some saying it's actually not Tourette's. It's more of there's there's tics, but it's not Tourette's Syndrome. And also, some research was saying, yes, there's a bit of a rise, but it's not an epidemic, when there's lots of sensationalist reporting, saying that this is going to take all your children, it's happening everywhere. If they're on tiktok, watch out, they're gonna get tics. But it's actually functional neurological disorders have been rising for decades. And this is just one way it might be expressed. And it's just the fact that people aren't that more that aware of them. So again, media likes to beat up things as well, which always frustrates me a lot.

Mon 38:16

Yeah, I agree with the last one. The second last one you said, the tics because I've actually had girls tell me like, I'll be like, I have Tourette's and they'll literally say I don't have Tourette's. But can I tell you something? I have tics when I get cold. Or I have tics that come up, only when I'm stressed. And then it'll never happen again. I totally buy that third one. I just I can't comment on it. But that one makes more sense to me. Because people have twitches, and like autism and people stim and like, I'm not autistic, but I stim like, I'll tap my foot that is a stim. So yeah, I think it's just coming out a certain way. And the media fearmongering.

Steph 38:56

Yes. They don't like social media anyway. Yeah,

Mon 39:01

there'll be like epidemic, tiktok ticks. And it makes mother's worry. And it's like for what? And you know what, you're just you're making stress you're making what causes this?

Steph 39:13

Yeah, exactly. And I think particularly things, FND, we're still learning a lot more than we really didn't know that much about most mental illnesses or neurological conditions. And as you say, most of the studies that have happened for for many things has been in men. So we we actually are still learning a lot more about how our brain operates. So it's really not that huge, a wild thing to come out of, particularly the times that we're in, and when you actually look at it critically. But of course, media doesn't look at things critically, it really likes to be black and white about things

Mon 39:52

literally and the whole thing on Tourettes, The media is so disappointing, because you know, so many people have written stuff about my page. Dailymail included, and they will not ask my permission, then they want to go on and write about how tiktok is causing this. So the media hates real life content creators talking about our own stuff, but then we'll rush to talk about our diagnosis. So it's like, we can't even have the power and then they want to take it off us and then make money off it. Like they're making more money than any Tiktok Creator

Steph 40:25

100%. That's how they operate.

Mon 40:27

Yeah, and like, I have a story on that.

Steph 40:30

Yes, please tell me.

Mon 40:31

I've had people from seven news reach up. I've had people from Yahoo reach out, they will make an article and post it without my consent. And I'll be like, what, what the fuck is? And then I'll be like, can you fix it up? And they didn't even they using my name. And they didn't even ask any permission. It's like,

Steph 40:50

are they just taking it from a post? Or from a video?

Mon 40:54

Yeah, so there was a article about me, um, I was looking on the internet. And it literally said it was like a Sydney woman swears uncontrollably, and woman threatened to call police. This is on Daily Mail. And it's like, bro, you never asked my permission to cover my story. And you're making bank off it.

Steph 41:13

it feels like they're just scrolling through social media looking for something that they can turn into a cheap story to get clicks.

Mon 41:22

Yeah. And that's what journalists nowadays are doing. They're looking on social media for clips that they can cover. It's like lazy journalism

Steph 41:29

It's so pathetic.

You wanted to talk particularly about the segment on 60 minutes. Was it? Was it tiktok Tourette's? I think it was called that? I think it was last year. Yeah. Tell me a little bit about that.

Mon 41:45

So I'm about to spill the tea in a very unhinged way.

Steph 41:51

Go for it

Mon 41:52

So it's 60 minutes reached out to me. They wanted, 60 minutes reached out to me and they wanted to a segment on Tourettes. And the woman said, this really interests me and I want to spread awareness to the wolr.d And I wanted to cover my story about being a top content creator with Tourettes. They released it and the article was tiktok tics. And I haven't even watched it. But let me tell you, when I saw that I'm like a blessing in disguise that I turned it down.

Steph 42:22

What made you turn it down? What were your thoughts

Mon 42:25

I had trust issues past stugg I've had happened with media. that i didn't trust. And I don't I don't support 60 minutes. They sensationalise and dramatise and it was like I was not risking being on a live national TV with my face. sensationalised and to spill the tea guys, they don't pay you. They're a big broadcasting episode like that, and they don't pay you. It's free work to be risked to be, like, thrown under the bus. Can you believe that?

Steph 42:59

That's so disappointing, because it's not just in airing your face out there. It's also on very mainstream, low rung media. So whatever happens to you post that is, you know, I'm sure you would get a lot of exposure, but you would also get a lot of bullying as as just generally what happens. So that's really disappointing that you don't even get some payment out of it.

Mon 43:24

Yeah. And it's like so many people, you know, on the Tourretes association of Australia, they talk and be like, I'm so upset about how I've been portrayed on this channel. Like there is that thing with media and trust issues. And it is a story because Tourette's is interesting. It's different. And it looks weird to people. So of course, it brings in views and people know that

Steph 43:48

when I was watching that, there was also a couple of Tourette stories that 60 minutes aired, and, like my parents always watched 60 minutes on a Sunday night. So whatever they were showing, I would end up catching and I remember a lot of significant mental illness was portrayed on 60 minutes in very sensationalised ways. One of my first memories was of eating disorders, there was a young lady who they sort of tracked her experience with a very severe eating disorder. And that was like, you know how awful this person is, she won't eat. And then it was a couple of episodes on someone with Tourette's who they quote unquote. So this is the person with the worst case of Tourette's in the world and it's all very demonising, she had very, very significant tics that cause quite a bit of self harm. And one of there's so much distressing video footage of it and it was just, you know, gratuitous, and she tried to get I think it was transcranial stimulation to try and reduce the tics which didn't, unfortunately or fortunately depending on how you feel about it. wasn't able to be maintained because of infections. Pretty significant.

Mon 45:04

Yeah.

Steph 45:05

But then they caught up with her much later. She's very living a very functional life. She's got a partner still engages in tics, but it is doing quite well in life. And it was, you know, obviously a very big journey of this person, but just being in the spotlight for so long just to create sensationalist media. Like, it's nice that we see her with Tourette's, having a very full life and having sort of made space for the threats rather than trying to cure it, which is what we want to see. But all the stuff leading up to it was really, really gross.

Mon 45:43

Yeah, it's a guilt people have to carry, like seeing your old self. And it's hard, and that TV can cover you, but they're not going to offer you support.

Steph 45:53

And that's there forever too she's gonna always have that media on the Internet for the rest of her life that makes Yeah, that's really uncomfortable.

Mon 46:02

Exactly. Like it's like a spotlight on you. And yeah, you know, there's no editing control. Like I asked, I was like, Do we get to see a cut before its aired and they're like no, the first thing is, it's ad so the first time you open up the TV it's aired, and that is so much. And same with the singing shows. It's like your audition.

Steph 46:23

Any reality show really. Yeah,

Mon 46:25

it's disgusting. Yeah. So anyone listening, do not trust the media do not trust what you see. They're all owned by the same people. Like it's rigged, like do not formulate your own opinions on your own research. And listen to disabled people. Yeah, like, yeah,

Steph 46:43

so you didn't watch the final episode. But you kind of know what it was portraying. Did you have people reaching out to tell you what they were disappointed in about it?

Mon 46:55

Yeah, some people. Some people liked it. Like they're like, Oh, that was good bit. But I just never mainly cuz my ADHD. I can't watch stuff. So yeah, and I just didn't want to give it energy.

Steph 47:07

Yeah fair

Mon 47:08

I will one day because I'll bet Oh, you know, what a blessing in disguise. And I want to see what bullet I dodged. But I don't know. I'm scared. And I would rather not fill up my head with that.

Steph 47:17

Yeah, no, that's fair. And I guess I did, I did watch it in preparation for today. And, you know, I was expecting a little bit worse, to be honest, because I am with you, I don't love 60 minutes. But there was definitely a big focus on social media being a culprit, that person they interviewed, the psychiatrist they interviewed wasn't too bad. Like he was kind of saying, This isn't social media's fault. But maybe it's played a role. So that was a better message, then we're blaming social media. But I think he definitely could have done a little bit more in actually explaining, you know, correlation and causation are two different things. And what about all these other things that have been going on in the last couple of years?

Yeah. Like, I am glad it wasn't as bad. But even just to title it Tiktok Tics to like draw in that viewer,

yeah clickbait

Mon 47:57

and then be like, it's not that bad. Yeah. Like you said, is entire entirely clickbait.

Steph 48:13

Yep. And there's so much like Daily Mail is so good at that, like we were saying, it's really media, I think that we need to blame for this being seen as an epidemic rather than the actual what's actually happening as well. For sure.

Mon 48:27

Yeah. It's like, why, why are you focusing on this? Like, why don't you focus on the actual epidemics?

Steph 48:34

Yeah, and I there's been some nice, like, there's been some awful articles. But there has been a nice article of how.. it was by The Verge she was talking about, if this is what's going on, and we're seeing a little bit of a peak, then why don't we talk about the mental health of our teenagers at this time, like, let's not blame tiktok, their distress that's led to, you know, a decline in functioning or whatever it is already there. So let's focus on that. And I'll link that one because I quite liked that article, winning to actually look at what's going wrong in society that, you know, these kind of neurological, or functional neurological disorders are popping up a bit more commonly. So I was gonna ask you as well? You mentioned that you were on an episode of a YouTube series called Dating Differently.

Mon 49:23

Yes. So we're gonna spill even more tea tonight.

Steph 49:27

Love the tea.

Mon 49:28

So, this UK production company reached out to me called Dating Different, and they wanted to do a blind date with tracks and I saw their coverage was really good on past Tourettes tuff. So I was like, hey, this was cool. And the pay is good.

Steph 49:44

You got paid this time. That's a win. Yeah,

Mon 49:47

I did it. And yeah, it went fine, the filming went beautifully. And I was really happy. I felt like I portrayed my story very well. And then what happened was after that day of filming I received the cuts. And I was so excited to show my friends we were doing gonna do a viewing party, but I spent the whole night feeling like shit because the cuts are so offensive that I was surprised like the original cuts it was every tick I had they put like, doo doo doo music over the top of it.

Steph 50:18

Oh my god that's awful

Mon 50:20

and they zoomed up on my face. Do-do-do and then zoom up my face, every tic. And I sent her this whole ass paragraph of 10 things like 10 points being like, you need it remove this remove that that is not okay and hurtful to me because you're sensationalising it, and literally re traumatise myself, and explain why it was not okay.

Steph 50:44

Did they not have any insight into why that was a problem?

Mon 50:47

I don't know if they had insight into why the edits are offensive, but the fact that they didn't view it as offensive.

Steph 50:52

Yeah. Cos they we're just happy to send it to you. And then yeah,

Mon 50:56

yeah. And mind you, the editor, and all the people on board are that were young, they were around my age, and it just felt like a betrayal. Young people doing that. And yeah, I had to run them through why it was not okay. And they had to remove the music and the zooms and it's sensationalised aspect of it. But yeah, like, I just wanted to bring that up. Because don't trust what you see, it may look good right now, but you don't know what people went through to get it to where it was.

Steph 51:24

And the fact that you had to advocate for yourself as the subject in the film. And okay, like you have Tourette's and your, youre in the video. So you know, you're representing someone with Tourette's. But if they're doing good justice, whether it's fiction or nonfiction, then really they could have run through with someone from the Tourette's community to make sure they will give doing it the right justice, rather than making you have to go through it. And feel really awful about yourself. Before sending that to you.

Mon 51:57

Yeah, and genuinely like, yeah, it was just as traumatization. And there, there were so many beautiful points, they could ahve, could have put in that I raised. But they didn't.

Steph 52:08

What was some of those points? Because I'm obviously link the video in the Episode Notes, but what would you have liked to share more in from that video?

Mon 52:16

We were just like talking about, um, you know, Tourettes as a whole stuff like that. And yeah, just like how it was being diagnosed and stuff, but like, they didn't include it in the end. But it was just the music and the dramatising and I did say more about dating as someone with Tourette's. I did touch on that more, but they Yeah, didn't include that.

Steph 52:40

You do say that on the show in that it's a good screener. So if someone doesn't accept you, off the bat, once they discover you have Tourette's, then like, you don't have to bother wasting your time with them. Did you? When we looked at the previous videos, they hadn't used those kinds of noises that that or that audio that they did.

Mon 53:01

Yeah, their reporting was really nice. They have a whole dating thing on different disabilities. Yeah, it was really respectful, so that was why I trusted them, but yeah, got that timing

Steph 53:12

That's such a shame. It's really good to know that they took onboard your feedback. Did they apologise at all?

Mon 53:21

No, they just sent it back and was like, here's the Edit

Steph 53:24

right?

Mon 53:25

And then like, I didn't want it to be posted by then. But they got you stuck in a contract, and you'd already been paid. And it's such a mess. And another thing too, is they took pictures of you like for the cover. And it's like, you ask the photographer and they can't even give it

Steph 53:41

Oh, really? They couldn't give you the photos?

Mon 53:43

No. So it's like gatekeeping like, I get licencing and stuff, but it's like, it's my face and I can't even access my photos

Steph 53:49

It's you! Yeah. Oh, that's disappointing. I wonder what went from given they their previous media was quite respectful. I wonder if what what they were going with with that or what they thought they were going to achieve? Because that's really disappointing.

Mon 54:04

Yeah, I don't know.

Steph 54:06

Did you end up seeing the girl again that you had the date with?

Mon 54:11

Funnily enough, I actually saw at an event, but like, I'm not going to get into too much. We actually had our own chat about how we thought the whole thing was bullshit.

Steph 54:21

Oh really? Oh well at least you bonded over that experience in some way.

Mon 54:25

Yeah

Steph 54:26

yeah. I guess for anyone with Tourette's or anyone with with a neurological condition that sometimes they struggle with or that they have to share with people. what's some advice you might give someone in the dating world?

Mon 54:41

I'm still learning this myself of dating or being social, but tell them from the beginning. Like, I know it hurts and it's annoying, but rip the band aid off because I get stuck in this vicious cycle where I don't tell people and then they figure but then then I know that figured but then I haven't told them. And it's like, I know you figured, but I have Tourettes, so tell them from the beginning. And if they can't accept you for who you are, get rid of them. Like, that's your only closure you need.

Steph 55:11

Yeah.

Mon 55:11

And, and like, people struggle to find friends or they're like insecure and whatever, which sucks. But it's like, just know there are people out there for you. And to not give up. Like, sometimes you feel lonely, but there will always be someone for you out there. And there will always be friends the right people that get it. If not now, later.

Steph 55:33

Yeah, I love that message. And I love that, you know, if they're not accepting you, just don't waste your time. I think that's a really good lesson to learn.

Mon 55:42

Yeah, and like, don't be with anyone that makes you feel like you need to suppress, like, surround yourself have beautiful understanding people who will have your back if anything goes wrong, do.

Steph 55:53

Wonderful. And what about someone who is dating someone with Tourette's? Or has discovered that the person they're going on a date with has Tourette's? What is some advice you would give them?

Mon 56:04

Yeah, um, be open minded. Don't feel scared to ask questions. We love it when people ask questions. Like when they say, How can I support you with your tics? Or how would you like me to react? That is the best thing rather than you being offensive because you didn't ask. So yeah, just ask us and be respectful. Like treat us like a human. We're just the same, like, just be kind. Yeah, and it's no offence, it's common sense. But also, do your own research. Because sometimes we're tired of explaining. And we love when people were educated and we don't need to explain. That is the biggest satisfaction.

Steph 56:46

Really good advice. When you say do your own research, what would you suggest they actually engage with for that research? Given what we know about Daily Mail, etc?

Mon 56:56

Check your sources, sister. Watch, tiktok. Like it's good. But don't be like, Oh my god, I followed these Tourettes person, like it's good. But it's like if you just watch tiktok to educate you it's kind of cringe, go above and beyond tiktok, there are amazing sources on Google, like from a Tourette's organisations or Tourette's bloggers, check your sources, don't just go to some saying something and say you did your research, read Tourette's creators content.

Steph 57:29

And that's always a message we're constantly banging on about here is engage with content from or you know, whether it's media, whether it's film, whether it's, you know, research, books, from lived experience, people with lived experience, people who are experiencing what you're engaging with

Mon 57:47

100 percent.

Steph 57:48

And I think that comes with some of the research too, because what a couple of things, a couple of the better articles that also was sort of rebutting some of the more negative depictions of the Tiktok tics quote, unquote, one of the articles in particular was saying, we call on scientists and individuals with lived experience to develop research and approaches that accommodate the society that patients live in. And I think that's a problem with research in general is it's often high profile, or, you know, just researchers who don't have that lived experience who are making these calls and doing this research. So that's a really good, important thing to touch on this. Let's talk to people with lived experience.

Mon 58:31

Yeah, like, everyone wants to talk to a neurologist because it's cool, or I trust him, but he can only do as many years of studying. I live with this every day. He doesn't learn how a tic feels. It's like, go talk to the families go talk, like amplify, amplify the voices of people with disability, because that is the most real, they don't have any gain from it. There's no finances involved. It's just real. It's candid.

Steph 59:01

Yeah. Yep, definitely.

Mon 59:04

It's like talk to a baker about how to bake bread. Don't ask a other person. Yeah.

Steph 59:09

Yeah, yeah, exactly. On that note, too, I love the Tiktok you created where you were explaining to some kids about your tics, and you expressed it as you explained it, like like you need to fart you got to you've got to let the fart out to feel like it needs to, it needs to come out when it needs to come out. And that was such a beautiful conversation that you have with those kids.

Mon 59:35

That is so sweet. Like you remember that that makes me so good. I literally, I made it up on the spot. I was like, How can I make this funny and engaging and less scientific? Because I use the sneeze analogy with like everyone, but like, the fart just was funny. And he said I fart all the time. Thank you for that.

Steph 59:57

I also love that like there was I think One particular kid who was saying, you shouldn't make fun of it or pretend because that's not fair on people who are actually experiencing it. I was like, That's it right there.

Mon 1:00:11

Yeah, he's like, it wrecks it for thme. And I still work with kids. And they're so rewarding. Like one girl today. She's like, Oh, I used to live in Japan and a girl I knew had it. And another girl goes, Oh, my dad has it, he always swears at my mom, but you can't control it. And then I have a girl like advocating for me. She's like, Oh, by the way, she swears. But don't make fun of her.

Steph 1:00:33

That's so sweet.

Mon 1:00:34

like, kids over adults.

Steph 1:00:36

Yeah. And I think that's so true. Like, kids just get it, like they don't... They'll be curious. And they'll be they'll question like, my three year olds is definitely wants to ask a lot of questions to get something but once you get it, they're like, Okay, I'm alright. Now I'm gonna, I'm fine with that. I'll move on. And it's something that adults need to practice doing a little bit more, I think.

Mon 1:00:56

Yeah, cuz adults, you know, when you meet, they're like, sassier. And they're like, I don't know, if I'm talking to this person. He's like, Hi, how are you? Yeah, like I say this. kids and dogs even. Like, literally, let me tell you dogs are so understanding the first tic, they respond. But they have this innate thing about dogs. They get it straightaway. After the second tick, they don't get scared. Like, animals know, like, when I'm petting them.

Steph 1:01:23

Yeah, have that sort of sense that, you know, that sense of safety? Or yeah, that's, that's so good. Well, thank you so much, for talking. It was really awesome to get your perspective on what not not just to act in media in general, but on what it's like to be a content creator in this space, and also to have your content demonised as a contributor to tics, which hopefully, we've collectively debunked. I guess what would be your sort of final message for particularly the depiction of Tourette's and media?

Mon 1:01:55

Watch stuff straight from creators? Check your sources, media has a long way to go. Media needs to employ people with disabilities, for their acts, and stop trying to make money off of disabilities. And a lot more consent and ethics needs to be put into media. I think it has, it's going well, like it's improving, but it has a long way to go. And we will be here for like we will, we will look back, I have faith, we will look back on this in 10 years and be like, Hey, we were talking about this now. But look at how have been. Similar to the gay rights movement. Same with anything, it's slow. But we will get that, like I have hope people are awakening and like spreading love.

Steph 1:02:43

I love that you have hope because I feel like sometimes, particularly when you're in the thick of it as you are, it must be really hard to continue with that hope because it sometimes feels like you're constantly on the bicycle trying to pedal furiously to promote Yeah, more ethical journalism, etc.

Mon 1:03:01

Yeah, 100% But also, if you're a journalist or know anyone in journalism, and you're listening to this, like I hope this brings up some discussion or like a reflection. It's like, be a good journalist. Do your job well please like. last words too if you're going to go into a media job. Please know your stuff goes a long way. Like know the ripple effects and don't undermine the power of media,

Steph 1:03:31

particularly for very impressionable populations. It Yeah, has that very long term effect on how someone perceives something such as Tourette's

Mon 1:03:41

Yeah, literally. Just another quick example before we leave is, with the shitty dating different thing that I hated. Three strangers recognise me from that.

Steph 1:03:51

Oh wow

Mon 1:03:52

I think for anyone listening that should illustrate the extent of media. It was just one YouTube video. Like,

Steph 1:03:58

yeah, you don't know how far something's going to go. And yeah, once it's out there, it's out there.

Mon 1:04:05

Yeah. And yeah, just be kind.

Steph 1:04:07

Yeah, definitely be kind. Have compassion, I think is a good one. Yeah, so Mon, how can people what's your handles for Tik Tok? How can they access your content? Do you have Instagram etc?

Mon 1:04:21

Yeah, um, so my TikTok is meowmons like meow cat and, and my Instagram is ticswithmon sorry, tics with mon with an S. Oh, so can I ask add one last thing to the last thing you wish people want to know

Steph 1:04:38

Yes, absolutely.

Mon 1:04:39

I want to add don't take stuff at face value. So with my tourettes I only tend to show the happy side like me roller skating, but I don't show the tic attacks. So yeah, just don't take stuff you see at face value. Someone could be really struggling but not show it

Steph 1:04:56

I think a good message with that too is just just because someone puts content online doesn't mean they owe you. The, you know, the more distressing side of your life or you know, they don't. I think people can have the sort of parasocial relationship with particularly Tik Tok and any kind of create online. So I guess it's also you can portray whatever you feel comfortable portraying. And that doesn't necessarily need to be all the other different sides of of your life and life with any condition.

Mon 1:05:26

Yeah, like one I know has pinned on his account his diagnosis letter, like I would never do that, each to their own but it's like, so hurtful he needs to feel the need to do it

Steph 1:05:37

Yeah, yeah. Yeah. People think that they have the power to request your personal documents to prove whatever's going on for you. That's really fucked up to me. But it sounds like you are very resilient person in knowing how to manage some of those expectations.

Mon 1:05:57

I try.

Steph 1:06:00

Well, thank you so much, man. I've had such an interesting conversation with you. And thank you for sharing your story. And I really hope that sometime in the future we get a good depiction, an accurate, helpful depiction of Tourette's in the media, but I think we're yet to find one

Mon 1:06:20

yes, we'll see. We'll hang in there. Hang in there, guys.

*Music intro finishes*

Steph

This podcast is not designed to be therapeutic, prescriptive or constitute a formal diagnosis for any listener. For a longer version of this disclaimer, please visit the Episode notes on your podcast app.