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Episode 196: Tourette Syndrome advocacy – with Jhonelle Bean

Carolyn Kiel | October 2, 2023
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    Episode 196: Tourette Syndrome advocacy – with Jhonelle Bean
    Carolyn Kiel

Jhonelle Bean is a 28-year-old disability advocate living with Tourette Syndrome and PTSD. Jhonelle shares her experience with Tourette Syndrome through social media to educate others and help destigmatize the condition, especially within communities of color. She has also created a community called “For The Advocates,” where other disability advocates can find a place to relate and get support and resources from each other.

During this episode, you will hear Jhonelle talk about:

  • Her first tics in childhood and adolescence, and the reactions of the people around her
  • Why it took so long for her to get a Tourette’s diagnosis
  • How she decided to become a Tourette’s advocate online
  • Some common misconceptions about Tourette’s
  • Her advocacy about Tourette’s and communities of color
  • Why she created the “For The Advocates” community

Follow Jhonelle on Facebook, Instagram, TikTok, YouTube and Twitter.

Follow For The Advocates on Instagram.

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The episode transcript is below.

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.

Carolyn Kiel: Thanks for tuning in for today’s episode! I’ve got a great interview coming up with today’s guest, Jhonelle Bean, a 28-year-old disability advocate living with Tourette Syndrome and PTSD. Jhonelle shares her experience with Tourette Syndrome through social media to educate others and help destigmatize the condition, especially within communities of color. She has also created a community called “For The Advocates,” where other disability advocates can find a place to relate and get support and resources from each other.

If you enjoy stories like this from and about neurodivergent people, then I bet you’ll enjoy a lot of my other episodes too! There are lots of different ways you can connect with this podcast and hear more stories like this one. Follow Beyond 6 Seconds in your favorite podcast app (if that’s where you’re listening to it now) or go to beyond6seconds.net where you can also sign up for my free newsletter to get the latest episodes emailed directly to you. And if you’re already following the show and subscribed to my newsletter, thank you so much, I really appreciate it!

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One last thing – I had a bit of a cold on the day we recorded this episode – so if you notice that my voice sounds raspy during the interview, that’s why.

Ok! Now here’s my interview with Jhonelle. Jhonelle, welcome to the podcast!

Jhonelle Bean: Thank you for having me. I appreciate it.

Carolyn Kiel: Would love to learn a little bit more about your own story and your own journey with Tourette Syndrome. So when did you get diagnosed with Tourette’s?

Jhonelle Bean: So that question in and of itself is always interesting because for myself and for a lot of people with Tourette syndrome or a tic disorder, people usually don’t get diagnosed until many, many years after they’ve already had tics.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: So I didn’t get diagnosed until 2021 when I was 26, but I’ve had tics since, at least from what I can officially remember, about 15 or 16. But I spoke with a friend from elementary school not too long ago, and she said she remembers me having tics as early as like eight.

Carolyn Kiel: Wow.

Jhonelle Bean: So, who knows?

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: But yeah, it’s very common to have a long, you know, stint of having tics before you finally do get diagnosed, for several different reasons, whether it’s just people are not educated on it, for financial reasons or, you know, whatever it may be. It’s been a, a long, a long period between first, you know, dealing with tics and then getting diagnosed.

Carolyn Kiel: Yeah. Yeah. I think I had learned recently that Tourette syndrome is actually really underdiagnosed, which surprised me a bit cuz you know, you would think if you’re experiencing tics over a period of time that it would be easier to get a diagnosis, but it doesn’t seem like that’s the case. So that really surprised me to learn that.

Jhonelle Bean: Yeah, no, there’s a lot of people like I said, that either don’t get a diagnosis cuz people aren’t aware. Maybe like the parents just think it’s misbehavior or, you know, just assume that they’re just doing something for attention or different things like that. It’s not always understood as a neurological disorder or that it’s involuntary. A lot of people think it’s voluntary. They think, you know, somebody’s just doing it to be annoying, to get on my nerves, to get under my skin. So yeah, there’s, there’s a lot of people that go undiagnosed. They estimate about 50% of kids that have a tic disorder go undiagnosed.

Carolyn Kiel: Wow.

Jhonelle Bean: Mm-hmm.

Carolyn Kiel: So when you remember starting to get tics when you were like 15 or 16, like how did it start and what kind of tics did you have at that time?

Jhonelle Bean: Yeah. So I remember, I remember the very first time I had a tic that I can remember. In high school, it was like a summer course that we were taking, and I remember feeling this kind of weird feeling in my neck. And then I like jerked my head to the side. Immediately after that, the person that was sitting next to me kind of jumped back and laughed and said, “oh my gosh, what is that? You look possessed!”

Carolyn Kiel: Whoa.

Jhonelle Bean: So from the very first tic I can remember, I was already dealing with people’s responses to, you know, that. But from there I started developing some other things. Pretty common, like, you know, hard blinking tic that a lot of people have. I would like raise my eyebrows. It kind of started more so with like my face and neck. And then developed into other things. I remember kind of having like a humming tic that I would hold really hard in and suppress, kind of moving my body, tensing my stomach. That’s kind of how it was within at least the first year. Flicking my wrists, all kinds of stuff. And I’ve had, you know, a bunch of different tics throughout the years since then.

Carolyn Kiel: Mm-hmm. So you were a teenager when you first started really noticing your own tics from there. So between then and getting a diagnosis, like what was it like being in school with tics like that? Did people continue to think as you were saying, that maybe you were like kidding around with them or did they, like what were people’s reactions to that?

Jhonelle Bean: Yeah, I think because when I did first develop the tics and my high school was pretty small, my class was pretty small. So when I first started ticcing a lot more, I think it was a little bit easier because people kind of already knew of me, but I still had people like staring at me, people asking, why are you doing that? My high school, you know, encouraged collaborative learning. So we didn’t have individual desks. We had like round tables that you sat at. So if I was ticcing and moving the table, I was moving the table for everybody. And then it was annoying, you know?

But for the most part, I feel like as time went on, I had some friends that were supportive. Once I kind of told them what was going on, I at least could tell them, “this is involuntary. I think it’s a tic. I’m not, you know, choosing to do this.” I did have friends that were supportive and said, “oh, like, you know, it doesn’t matter. It’s not a big deal to me. We can still hang out and be friends.”

And I even had a friend help me with one of my assignments for school, because I remember I kept having this tic where I would roll my eyes kind of like to the side, like the corners of my eye, if that makes sense. So I was trying to read a book and I couldn’t finish reading because it just kept happening again and again and again. And then I’d lose my place like, okay, wait, where was I in in the book? And different things like that. So I remember, I think I had like two pages left. It was lunch and the next period was the class, and we’re supposed to finish the reading. So I was like, “can you please just read the last two pages for me?” And it was just easier for me to listen that way. Yeah, I mean, if I, you know, had the known diagnosis already, I think I would’ve been able to have accommodations that I needed in school, but because it wasn’t a thing that my parents acknowledged that I had, or, you know, it was just like, “oh, you’re fine. Like, go pray.” I didn’t really have those resources for accommodations in school.

Carolyn Kiel: Yeah. Yeah. I was gonna ask what your family’s reaction was. It sounds like something that they weren’t really focused on, or didn’t wanna acknowledge.

Jhonelle Bean: Yeah. No, not at all, sadly. I remember specifically telling my mom, because I actually did know what, you know, tic disorders were, what Tourette Syndrome was. I had been educated on that at least a little bit. And I told her what was going on and her response, she just kinda like laughed, not LAUGHED laughed, but kind of like, “oh, you’re silly.” And said like, “oh girl, you’re fine. Like, go pray, like this, you don’t have that.” So. It’s not really a thing that’s acknowledged or even talked about within the Caribbean community. Because my family is Jamaican. So it’s, it’s not really a thing acknowledged in the Black community either. So I just kinda dealt with it by, you know, Googling what I could and learning stuff from scholarly articles at 15, to try to learn, you know, what I was dealing with.

Carolyn Kiel: Wow. Yeah. And you wound up getting a diagnosis well, relatively recently.

Jhonelle Bean: Yes.

Carolyn Kiel: And you’ve been living with tics now for several years. Was that something that you decided to pursue, I guess, on your own? Or was there something that precipitated you saying like, no, I, I really wanna pursue and see if I really have this diagnosis of Tourette’s?

Jhonelle Bean: Yes. I mean, I was pretty sure that that’s what it was, but I had to wait until I was 26 because that’s in America when you would get kicked off your parents’ insurance.

Carolyn Kiel: Right.

Jhonelle Bean: So anything that I pursued beforehand on my parents’ insurance, because I didn’t have a job yet to where I, you know, had the benefits like that. You know, they would always question, “wait, what is this? Why do we get, you know, a claim for this, that, and the other?” So I didn’t wanna deal with that. So I had to wait. I know it’s really sad, but I had to wait until I was 26 and had a job with, you know, benefits where I was able to go see, you know, the doctors without it being a crazy price. And that’s how I was able to go.

Carolyn Kiel: Wow. Once you had the diagnosis, did things change? Like did you ask for accommodations at work or was it more just sort of understanding that like, no, I actually do have Tourette’s and understanding that?

Jhonelle Bean: I think the understanding was there. I mean, I was also a psychology major and we talked about things like that in class when we went through the diagnostic manual. So I was pretty sure, but you know, of course I just could only tell people like I assume or, you know, I feel like based on the symptoms I have a tic disorder, I just haven’t, you know, had the opportunity to be diagnosed yet. But once I did go to the neurologist, he’s like, “yeah, you definitely have Tourette syndrome.” To him it was like very clear.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: But yeah, I just really kind of already knew it was a thing. I started to talk about it, you know, online. So people that did work with me, you know, were aware. But I was kind of used to, I guess doing what I needed to do, you know, “oh, I’m going to the bathroom real quick so I can let out my tics!” Stuff like that. So it was a little bit of an adjustment to try to change that. And then at the job that I’m at now, I have, you know, a lot more freedom. I’m advocating for people with disabilities, so they’re very understanding about disabilities.

Carolyn Kiel: Mm-hmm. That’s great. Yeah. I was wondering once you left school, what your experience was with people either at, at work or just elsewhere in life, or kind of reactions that you got from people who saw you tic. If they were understanding or if they kind of ignored it or sort of what that experience was after you left high school, I guess.

Jhonelle Bean: Yeah, so in college I definitely still dealt with tics. Tics kind of naturally wax and wane. Just like any dynamic disability where, you know, some days are worse, some days are better, some months are worse, some months are better. So they definitely still were very much, I guess, on the waxing period where there was, you know, dealing with it a lot in class. But once again, because I didn’t really have any, you know, formal diagnosis, I wasn’t able to get any accommodations or any disability services there.

In class, I guess people, a lot of people kind of boiled it down to like, “oh, she’s kind of funny or she’s kind of quirky.” I feel like it’s a very common adjective that people with Tourette syndrome get. Because you know, when you deal with people’s responses, like that first time I remember ticcing and the person jumping back and, you know, acting like I was possessed, and laughing.

You learn to kind of mask that. Cuz you can’t 100% suppress your tics. It’s impossible. It’s like, I’m sure everybody’s experienced trying to hold back a cough by now, and how your eyes start watering and then it just has to come out. It’s the same thing. So instead you’d learn to just kind of mask it where you try to make it seem like that movement or sound that you made was intentional with something else. So, for example, if I had one with my neck, then I would act like, you know, I’d put my hand on my neck and act like I’m stretching, or if I had one where I was like, hard blinking or something, I’d put my hands up and wipe my eyes. Like, you know, there’s something in my eye. Different things like that. So a lot of people saw that and just thought that I was quirky. I’ve heard that I was just fidgety or hyper. But the days that my tics were more noticeable or I couldn’t fully mask certain tics, I definitely would get people chuckling at me for that.

Carolyn Kiel: Wow. Yeah, it’s interesting the whole, how the whole masking of the tics and you know, I’ve even talked with people who kind of try to redirect them into different movements that look different or

Jhonelle Bean: Yes, that too.

Carolyn Kiel: Yeah. You’re saying kind of combining them and making it look like it was intentional. Yeah.

Jhonelle Bean: A lot of work.

Carolyn Kiel: Yeah. There’s a lot. I, yeah, I was always struck by the amount of planning and thought that goes into something like that and into the masking, so yeah, absolutely.

Jhonelle Bean: Yeah. That’s why I think it’s important to not ask people to do that because you’re focused on that instead of what’s going around you, whether it’s somebody’s conversation or class or, you know, whatever it may be. It’s a lot easier to just tic and just let the tics out than try to ask somebody to suppress or mask.

Carolyn Kiel: Yeah, absolutely. And so now you do a lot of social media where you advocate for you know, educating people about Tourette’s syndrome and de-stigmatizing Tourette’s syndrome. How did you decide to start advocating on social media for Tourette’s?

Jhonelle Bean: So, I, like I said, did not get diagnosed officially until 2021 when I turned 26. And, you know, I had kind of already been wanting to, you know, talk about just, you know, having tic a potential tic disorder for a while. I would see, you know, people post for Tourette Syndrome Awareness Month and, you know, I would say like, “oh, like I should do that,” but I just never got the courage to do that.

I guess I’ve just always loved to kind of like spread awareness on different things. Prior to that, I had worked doing different things within the disability community at a camp for, you know, individuals with disabilities. I’m also fluent in sign language, so I advocated for the deaf community. So it was kind of already a thing that I would do, you know, within me. But it was kind of different talking about my own condition, especially when a lot of people’s responses are laughter or, you know, shock or, you know, I don’t wanna say dramatic cuz you know, they don’t know what they’re saying. But in that sense, like I said, like with my friend jumping back, like, yeah, she didn’t have to do all that. So I kind of thought it would be a good idea to advocate and spread awareness to try to help other people that might be in that boat that I was in, back when I was dealing with it by myself.

And there wasn’t a ton of resources online. There was a lot of, like I said, scholarly articles that I was trying to read through and figure out what it meant. There was only a very tiny few people talking about it, talking about their lived experiences. So I thought, it would probably be beneficial to finally talk about it and create videos and educate people on it to help people that maybe just had no idea, and now they know, or to help people that were like in my position, like how I was back when I was a teenager.

Carolyn Kiel: Mm-hmm. Yeah. And what kinds of content about Tourette’s do you like to create and post on social media?

Jhonelle Bean: I post, I post different things. I post sometimes like kind of funny, sassy stuff, like little skits of, you know, conversations I’ve had with people or encounters I’ve had with people. I post educational content. So maybe educating on what like a tic feels like or talking about, you know, maybe certain things that trigger your tics more or less. Different things like that. Things to not say to somebody with Tourette syndrome. Ways to support people with Tourette Syndrome. I talk about all kinds of stuff.

Carolyn Kiel: And are there any like, well, I’m sure there are a lot of big misconceptions about Tourette’s out there in the world, but that in terms of that you encounter over and over again, are there like a few, really big misconceptions that you like to try to educate people on or that you feel like people still kind of have in their heads when they think about Tourette’s?

Jhonelle Bean: Yes. Yeah, for sure. Yeah. The number one thing every time, the number one thing is people assume that if somebody has Tourette syndrome, that they’re automatically going to blurt out curse words or slurs. That is a tic that some people with Tourette syndrome can have, but that is about 10% of the population of people that have tics. So, Tourette’s is way more than just that. But for those people that do have it, it is hard. People that get kicked outta movie theaters, people get kicked out of restaurants, grocery stores for something that’s involuntary. So don’t assume that just because somebody has Tourette syndrome that number one, they are going to curse. But even if they do, it’s not ever intentional.

The second biggest misconception I would say is people assume that we tic all the time, which is not true. I mean, think about any other involuntary, you know, thing we have. Do you sneeze all the time? Do you cough all the time? Do you hiccup all the time? Like, it changes throughout the day. And yes, we have those added tics on top of that, but there are times that I can, you know, sit through something I’m working on, and if I’m really focused, I might not tic for a whole hour. There are other times, like earlier today where I was ticcing for a whole hour. So it just depends. But if you see somebody at one time ticcing, and then maybe you see them later and they seem to not be ticcing that much, it’s not like they’re trying to make anything up or do something for attention. It’s just tics naturally wax and wane.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: And then the third biggest misconception, there’s really so many.

Carolyn Kiel: Yeah.

Jhonelle Bean: But I guess the third biggest misconception I would say, is that people think that, especially with like kids, they think that it’s voluntary. Like they think that you can try harder to not tic. Like you’re ticcing cause you’re not having self-control, but if you just try a little harder or if you just focus, you’d be able to stop ticcing. But that’s not the case. Like I said, it’s involuntary. It’s just like when you feel like you have to cough, you can try to hold it back for a little bit, but it’s just gonna build and it’s gonna come out way worse.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: And it’s not a thing, it’s not like a lack of self-control. It’s not like you did anything to cause it. It’s just naturally what our brain is wired to do as somebody who’s neurodivergent. But yeah, those are the three big things I would say.

Carolyn Kiel: Those are big ones. And I, yeah, I hear those a lot too. And I know a lot of advocates like you will kind of remind people and, and educate them about what it’s really like.

We also mentioned in your bio that you also do a lot of advocacy around Tourette syndrome, around disability, to kind of de-stigmatize Tourette’s in particular among communities of color. And in terms of a lot of the Tourette’s advocates that I just see on social media, I see like a lot of them do tend to be white.

Jhonelle Bean: Mm-hmm.

Carolyn Kiel: I don’t see as many advocates of color talking about that. So what kind of issues do you advocate about or educate about related to Tourette’s and communities of color?

Jhonelle Bean: Yeah, this. Like you said, there’s definitely a much lower percentage and number of people that are people of color with Tourette syndrome that advocate. And I feel like that comes from, you know, several different reasons. A lot of people of color when it comes to conditions or mental health or anything like that, it’s very much hush hush. If it’s even acknowledged, it’s hush hush. Don’t tell our business, you know, outside the home type of thing. So I mean, I can understand that. But it doesn’t mean that people, you know, that are people of color don’t have Tourette syndrome. Like Tourette syndrome affects every race and ethnic group equally.

So usually with culture and Tourette syndrome, I talk about the importance of people just kind of recognizing that even though everybody’s experience with tics is different, like people’s experience with tics that are people of color is very different. And so you can’t necessarily, you know, sit there and judge somebody. Like, let’s just say they do maybe wanna start spreading awareness through creating content or talking about it. And you’re just, you know, maybe somebody else is saying, “oh, why not?” Like, you have to consider like the cost that, that may be, that cost may be you know, a strained relationship with their family. You have to consider if somebody’s, you know, kind of suppressing or masking their tics and you’re saying, “oh, just, you know, let it out. It’s fine!” You have to consider the place you’re at. Like, people like me, like I will, I try not to suppress, but in certain situations with law enforcement, I definitely will, because it’s easily misinterpreted, involuntary movements easily misinterpreted as what it may look like if somebody is having withdrawals from drugs. And they associate that because of the color of my skin. Even though, you know, somebody who is white and has Tourette syndrome have the exact same tic as me. Sadly, there’s people who have prejudices in their mind that that’s not what the first thing they’re gonna think of. They’re not gonna think, oh, maybe that person has a medical condition. You know? Or if you’re having an interaction with somebody and you might have a verbal tic that, you know, might be, you know, people think, oh, you’re just trying to interrupt me. They’re a person of color. They might think otherwise. So it’s just definitely something that I think needs to be talked about more and needs to be recognized more that our experiences are not always the same in that sense. So if you do see somebody that is still suppressing or is not talking about it, like there might be a reason why, that you might just not think of.

Carolyn Kiel: Yeah, absolutely. It’s interesting because I think sometimes there are, you know, sometimes the narrative is, is like, you know, and I see this around like the, the autistic communities around like, unmasking and, you know, connecting and just being more of your free self. It’s like, yeah. But there are like, you know, certain times when it’s not really safe or a good idea to be completely unmasked and, and some of those, you know, as, especially for Black people and other people of color in certain situations. And yeah, it’s something to definitely be very mindful. So, yeah.

Jhonelle Bean: Yeah, it is true. And I think, I’m hoping that in my, you know, advocacy and in my work that I’m doing through my videos and just different stuff that, you know, not just people with Tourette syndrome will see it. Not just people who have no idea about Tourette syndrome will see it, but also maybe parents of, you know, kids of color with a tic disorder may be able to see it and kind of, you know, just, I guess, see it from a different perspective and not just see their child trying to misbehave, you know, for examples, what’s something they might believe. But see me as, you know, a young adult now, still living with it, still dealing with it, still ticcing and talking about it. And hopefully that will be able to, you know, kind of make a change in how, you know, people’s family might view them with Tourette syndrome. Because that’s honestly where it starts with the feeling of needing to suppress and not feeling safe to be able to do that everywhere. To be able to just let your tics out freely. So. Yeah. My hope is that, you know, it does help and impact people within the Tourette syndrome community, yes. But also within maybe Tourette parents or educators or just anything like that.

Carolyn Kiel: Yeah, yeah. The family’s really that first place where you learn and kind of get that baseline and that acceptance. Absolutely.

Jhonelle Bean: Yeah.

Carolyn Kiel: And you also started a community called For The Advocates around disability advocacy as well. So yeah, tell me about that and what your, your goals are around that community.

Jhonelle Bean: Yeah, so I created For The Advocates specifically kind of based off my experience of wanting to advocate, but also not fully knowing, you know, what I’m doing in the beginning or, you know, needing resources. You know, sometimes even in your advocacy, it’s really easy to get, you know, burnt out or just fatigued feeling like you’re taking one step forward, two steps back. And I think it’s, you know, a good idea to have a place for other people that are advocates of, you know, other disabilities to be able to just come together in a space where other people get it, you know? It’s like, “oh, like, yeah, you get it. You deal with the people in the comments too that say all kinds of stuff about you and your condition, or how you’re faking it, or why don’t you just X Y Z?” You know, all the things. Like, you don’t have to sit there and try to explain what it is you deal with with that. Like it’s somebody else that just gets it.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: But also somebody else that you can sit and say, “Hey, I’m trying to figure out how to do this. Have you, you know, found a good way? Or have you found a good way to talk about this at work? You know, is that something that you know, you brought up in your interview or have you waited?” Just a place for people to bounce off ideas with each other and find that community and support.

Because we, I feel like people that advocate do a lot to help, you know, spread awareness and educate, and help, you know, just talk about inclusion. But you also need a space to feel included to just like, relax and be as well sometimes.

Carolyn Kiel: Mm-hmm. Yeah. A space to connect sort of away from the very public posts on social media. So you can kind of talk about it with, as you said, people who get it, who are in similar situations. Is it mainly a Discord community right now?

Jhonelle Bean: It is for that aspect of it, for, you know, just conversing kind of out of the public eye. I do also have an Instagram page. It’s just @fortheadvocates with some information as well. And then, you know, people may see videos and realize, oh, there’s a community and just kind of come in from there. So there’s def other things. You know, I’ve posted and kind of highlighted other advocates that I’ve seen as well that post like really good content about, you know, different things, different disabilities or accessibility, just to also just raise awareness that way too. That’s kind of like a broader, I guess, account for just disability inclusion and awareness. Because I know there’s a lot of people following that account that are not within, you know, the disability community. So something that they could learn there as well. And then, yeah, the Discord is for other people that are advocates to come and be and connect.

Carolyn Kiel: Oh, that’s really cool. Yeah, I think it’s great to have those in different places in the more public social media so that anyone can follow along and learn and then have that separate space where other advocates can kind of share their own lived experiences with advocating and just living with disabilities, things like that.

Jhonelle it’s been great talking with you. How can people find your online content and learn more about your advocacy?

Jhonelle Bean: Sure. Yeah. If you would like, you can follow me on all platforms at Jhonelle_Bean. So that’s j h o n e l l e underscore, and then bean, just like the food, the best way to explain it. So you can follow me there on all platforms. Mostly I’m on Instagram, TikTok, YouTube. Occasionally pop on Twitter, but not a ton.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: And Facebook. So, yeah, follow me there. I’ll be happy to have you. If there’s ever anybody that has any questions about Tourette syndrome or about advocacy, anything like that, my DMs are open. I’ll be happy to answer.

Carolyn Kiel: Awesome. Yeah. I’ll put links to your socials in the show notes so people can follow you from there. Is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Jhonelle Bean: Yeah, I mean, I would just say, you know, once, if you do have the ability to, you know, educate yourself on a condition, even if it’s not connected to you in any way right now, you never know how it may be later.

I’ve had a former coworker chat with me about a situation she had. She’s a speech therapist where because of her, you know, seeing my videos, watching my videos, learning about Tourette syndrome and learning about tic disorders, she was able to have a client and kind of let the parents know some of the signs that she was seeing, that they weren’t necessarily like, I don’t know what it would be called, but things that he needed to, you know, do or deal with in speech, it was really just a specific vocal tic that he had that kind of seemed like he was stuttering, but he wasn’t. So once they were, she was able to tell the parents about it, he was able to, you know, go see a doctor and get a diagnosis, which saved probably saved the parents money and probably saved him a lot of frustration, you know, feeling like, “oh, what can’t I get this, that I’m supposed to be working on?” When it was something that was involuntary. So even if you think this has nothing to do with me right now, I’m not connected to this in any way, you never know how it may be connected to you in the future.

Because it’s, you know, a condition that exists and it’s actually not that rare. Like people think it is rare, but they estimate about one in 50 school aged kids have some type of tic disorder.

Carolyn Kiel: Mm-hmm.

Jhonelle Bean: And about 60 something percent of kids with tic disorders grow up and still have a tic disorder. A lot of people think, “oh, it’s a childhood disorder. You grow out of it.” But still a lot of people that are adults that live with it. So you never know how, you know, you’ll come across it in the future.

Carolyn Kiel: Yeah. Yeah, really important to educate yourself on, on Tourette’s and, you know, all different, all different kinds of disabilities. Just to, to learn more about people’s experiences and recognize it in your own life as well.

Jhonelle thanks again. It’s been great talking with you, and I really appreciate you being on my podcast.

Jhonelle Bean: Yes, thank you so much for having me. I love the podcast.

Carolyn Kiel: Thank you.

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.





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