The UpTic

Diverse Voices of Tourette Syndrome

December 19, 2023 New Jersey Center for Tourette Syndrome and Associated Disorders Season 1 Episode 5
Diverse Voices of Tourette Syndrome
The UpTic
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The UpTic
Diverse Voices of Tourette Syndrome
Dec 19, 2023 Season 1 Episode 5
New Jersey Center for Tourette Syndrome and Associated Disorders

Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.

Episode Highlights:

[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.

[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.

[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.

[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.

[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.

[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.

[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.

[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.

[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.

Links & Resources:

●       Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/ 

●       New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

Send us a Text Message.

Support the Show.

Show Notes Transcript

Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.

Episode Highlights:

[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.

[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.

[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.

[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.

[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.

[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.

[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.

[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.

[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.

Links & Resources:

●       Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/ 

●       New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

Send us a Text Message.

Support the Show.

Michael Chichioco:

I think we undersell how important representation is sometimes representation is really important. Just seeing someone that looks like you and has been through experience means a lot. It give me the same talk on how do you navigate school systems. But if that person is of color, it's different when you know who that you're already a minority from the standpoint of race, ethnicity, and men. Now you also know that you have this label of being disabled or having Tourette's or whatever label you want to use.

Michael Leopold:

Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and thank you for joining us on this episode of the uptick. I'm joined here today with another Michael, his name is Michael Chichioco and he's a second year medical student at the University of California San Francisco. He's also a board member of the trade association of America's Northern California and Hawaii chapter. Michael. It's awesome getting to speak with you today.

Michael Chichioco:

Hey, Michael, thanks for the introduction. Thanks for having me on.

Michael Leopold:

Absolutely.

Michael Chichioco:

Great to be here.

Michael Leopold:

I'm looking forward to it. Michael, I was first introduced to you at the 2022 ta national conference in Minneapolis. Led a session on your story. Growing up your family being from the Philippines, you were born and raised in the states that you had a really powerful presentation around how to read is perceived in different cultures and different ethnic communities and low income communities. wanted to bring you onto the podcast to dive into some of the stuff you discussed a little more. It's a topic we really need more people to know about. I really appreciate all the work you've done to bring awareness to this. First you want to do maybe a little bit of a rundown on that presentation you gave and a bit of a summary or big mission was that you brought to everyone?

Michael Chichioco:

Yeah, great. Yeah. Thanks. So talk about that. So again, I guess some context for myself. I have Tourette syndrome. I was diagnosed when I was 14, it takes probably since I was about five. And I'll get into you know, what caused that gap. I think there's a lot of things about what caused that gap between when I first presented with text when I got diagnosed. As my God mentioned in the intro, I'm Filipino. My parents were born and raised in the Philippines, I would say close to 80 90% of my family is still in the Philippines, and a lot of them are from there. I was born in California in Los Angeles. And I definitely identify as being Filipino American. The mission and the talk was titled something along the lines of getting Tourette's Syndrome and culturally related challenges or something like that. The idea is to shed light and bring awareness to kind of the diversity in many senses. In this sense, I was specifically talking about cultural diversity and ethnic diversity within Tourette Syndrome, how does that impact everything from your literal identity? And I talked a lot about intersectionality. Intersectionality is the concept of how do all of your identities work? Right, whether that's your ability, identity, cultural, race, gender, socioeconomic, where you live, where you're from, how do all of these work together to kind of create your experience, so that one, but also from a systemic structural, that's something that I really wanted. culturally speaking, in the Philippines, especially my parents did growing up when they did, the society and structure that was not built to kind of raise awareness about neurological psychiatric conditions, mental health, things like Tourette's just didn't exist, wasn't recognized. You know, when I was here in the US, raised by very traditional Filipino family, you know, they're not trained to look for these signs, they're not trained to even believe that these signs are real. And that influences everything from when do I bring my child to once I go to the doctor, my family didn't even want to it was shameful to even accept the diagnosis, to talk about diagnosis. And I feel like that is an experience that maybe not everyone with Tourette Syndrome has with their family. And it's really going to be dependent on their culture or their background. And I think as a community, it's something we need to be aware of when we're supporting families, if we're treating patients who need to be aware of where they're coming from, and their family environment. So that was kind of the mission of my conference to just start that conversation.

Michael Leopold:

I love that. Do you want to talk a little bit about your earlier years? I remember you said tick started when you were around five or so. But it took a number of years. I think you said 14 or so before you got that official diagnosis do to walk us through that story and what that was like?

Michael Chichioco:

Yeah, sure. As best as I can remember, when I was around five, I think my very first few tics was I know I would like share my throat and I would roll my eyes and that I would just like kind of Twitch and move my head slightly. And that was kind of it. Sometimes it would do a weird thing. With my knees, nothing super obvious. It was just it was very, very subtle. And that was kind of it and to me, I always say this when I talk about tourettes to people, I didn't think anything was wrong. I mean, how do you know? Right? How do you know that? Nobody else is doing that. So to me, it was no different than when I was a kid at least, it was no different than when you sneeze. When you cough, like okay, like I'm sneezing and coughing, okay, I have to do, quote unquote, this tip, right. But I didn't even have the language for that. So me I wasn't complaining about it. It wasn't severe enough at that time that it bothered me wasn't complaining about it. Even people around me because it was still relatively minor in terms of compared to other people. None really said anything other than my parents every so often be like, Oh, why are you making that sound? Are you making that noise? Why are you doing that? And that was kind of when I was a kid. I really didn't again, I'm looking back now. Interesting. But at that same point, I mean, that's all there was to it. So I was around five, yeah, I'd say around 6/7 grade. So I was making about 1011 12. That kind of a change is when my text started getting more visible, like all the throat clearing sound, but grunting the sounds were louder. I was also repeating a few words, not like complex sentences or anything, but definitely just saying a word or saying a few words and repeating that a little bit more complex text like motor text, like I was clapping, jumping, and just kind of more visible. And we didn't get treatment for that or anything yet. But that's kind of what I started hearing things, whether that's, you know, getting bullied at school, or family members, especially family members, just saying, like, really confused, like, what are you doing? And so getting in trouble. To me, I started to think, okay, there's something wrong, but not something wrong, kind of intrinsically, because I feel like something's wrong. I just feel like something's wrong. Because everyone's everyone's telling you that they shouldn't be doing this. And no one else is doing this. I mean, I feel fine. Everyone else does. So that's kind of where I was coming from. Maybe when I was about 12, I remember I was at a soccer game. And I was in goalies who were looking at me. And that's when I really started taking off more, it's pretty much all the same motor textures more and just more intense. So they're not trying to like, okay, maybe something is so that they mean to the doctor, I think that's where I'll make one point where, you know, from when my tics started getting worse, to that point, that was maybe about three years where had a family been educated on Tourette's Syndrome, or Had this been more maybe they would have brought the kid in the waters a little bit sooner. So I get there, and my parents just didn't exist, like socially as a concept, like you just don't, they just don't believe in it. I think it's very different now. But just the specific time that my parents and my dad's parents, and all of them went to multiple doctors, and I think a lot of people would try to deal with this, but just not diagnosed properly. They thought it was either allergies, or quote unquote, phase, or just, I had no idea. People originally are probably familiar with what suppressing means. I was suppressing my tics. And the doctor was like, Well, I can't see it. So I don't know what's going on. I was probably around 12. And it just kind of kept getting worse. At that point. I just didn't care. Again, I keep harping on this, because to me, it didn't matter. It only mattered because other people, other people were making fun of me for it. My parents were, you know, saying things, family members, were not being the nicest about it. So that's why it mattered to me. Stick around the 14th was when I think my parents finally you know, they were googling some things. So they started to Google. But I found this is just really interesting. Now, what's going on? So that ICP piece together, oh, maybe this could be neurological. And that we mentioned

Michael Leopold:

I was going to ask what the next part then around how your parents reacted to that I know when I was diagnosed, actually kind of similar to you and that I didn't see it as that big of a thing as as something I do I Twitch, you know, I don't know why other people don't do this, but I do it. I just feel this urge to do these twitches and make me go through clearing noise or humming sound squeaking noise. I was diagnosed that and my parents had a much bigger reaction to it than I did. They were Oh, no, you know, what does this mean? In terms of his studies? Can he go to college and those questions that I think many prayers would naturally have a concern for their kids, those were a lot more prominent to them than it was to me. I was like, Okay, I got a name for it now. Okay, but I'm still, you know, still the same guy didn't really affect me having that that Tourette label that much due to talk about that experience for you, you know, when you got that diagnosis, did you still have the attitude of you know, it's just Tourette. So the same guy is whatever I do. And then also, how did your parents react to that diagnosis? For

Michael Chichioco:

me, and when I got diagnosed this and it's what started a strain of a very hard period in my life. Nothing changed in my symptoms, right? All the changes that are not going to the neurologist was fantastic, by the way, but you know, when I was sitting in that office, kind of hearing this, you know, I was 14 at the time That's when it really sunk in to me that I was like, different. When I got that diagnosis, okay, you have this condition this label this, whatever you want to call it. And I still have a hard time with labels to this day. That's one of the Okay, I'm not necessarily like everyone else. Like, there is a difference between me and other people, everything that everyone was saying about me being different, but it's not like I was different. And I think just hearing that from a doctor or getting a diagnosis, and that hit me, the best way to describe it, it's just this sudden realization that I'm different. And to be honest, like, you know, I'm talking about this now, as a 25 year old, I can put all of these reflections about how I thought it was feeling then, but truly that 14, I literally was just thinking, Oh, my God, I'm like, different. And that's probably all that was going through my mind was just shoots like, I'm different. For my parents, interestingly enough, and this is where the cultural part comes in. Now, I know how much but then I didn't, specifically Filipino families, it's common, to not talk about things, it's common to put a face up put a front, not talking about issues, not talking about emotions I'm talking about, literally just talk about it. We talked about this all the time with some of my friends, you know about how it's very common culture to just sweep things under the rug and just not talk about it and literally pretend like it's not there. When I know that there's a lot of feelings, a lot of thoughts, a lot of whatever about it, because you can pick up on small cues that you can hide, and because, you know, years later, right, almost 10 years ish. More than that later, I had conversations with people. So now I know what was really going. But in that moment, I mean, I, they didn't really say anything to me, like, it's okay, it's fine and call it a day. But I know it's clearly not fine when I see them feeling stressed out. Or when I see family members whispering behind their back toward me. I know, my mom was like, taking videos of me because she was trying to study it later to try to figure out what was going on. Or I will walk into a room. And then like, I'll see everybody talking, and then all of them will just be silent, and change the topic. And I'm like, well, you're clearly tiny. But to my face, everyone is like you're fine. Everything's okay, blah, blah, blah, blah, blah. And it was this weird sense of, you know, combining that with what was going on in the military different. That's when I really was like, okay, like, there is something wrong. But I don't know what's wrong. And again, I keep going back to this whole thing of, like, a lot of people's experiences, internally, we never felt like something was wrong, we feel like we used to like it was wrong, because of what society around us told us and how they should do it. And that's when I really started realizing this is what I'm navigating this is what I'm dealing with. You know, I don't like sharing too much specifics about this, when it's being disseminated out. Because, you know, I don't want people to think my family may not know, right? My parents didn't know what to do. They didn't know how to defend me from family members who would make accusations or say certain things, or a lot of this, like conflict was happening. And I'm just kind of sitting there. And I'm like, huh, and you know, again, culturally like, kids don't speak up the parents in Filipino culture. Like, if your older what you say is right, it doesn't matter if what you're saying is completely wrong. It doesn't matter. You're right. In my later years, maybe like 1617, I started speaking up. And that was not necessarily well received. 1617, and you're 4060, whatever. But what you're saying is, right, what you're doing is that right? Like pretend literally thinking that I was thinking it and this and that. So it was interesting, because it was this low realization of how they were truly feeling of that not accepting it. They didn't straight up told me up front, we don't accept you. You're different. This is not right. We don't believe in it. They never even really told me that. It's trying to discover that on your own when you start realizing. Like, they don't actually really buy into this yet. They don't really actually believe this yet. And they did tell me that. And I think that was a very unique part of my experience that I don't necessarily think everyone goes through.

Michael Leopold:

No, and I imagine it can also be a challenge with getting the support that you need. You know, a lot of people with Tourette are eligible for accommodations or they might want somebody to come into their classroom and speak about it or they want to speak and be that advocate to their peers spoke to in elementary school that my fourth grade class about it and it adds more complexity to that, you know, as advocates, we want to say yeah, you know, get your accommodations if you need them, use them and tell people about your tourettes, disclose, you know, teach people about it. There's times we can be more sensitive to the real challenges that can be hard. Do in different communities where I think this may be seen as less of a priority less of an issue. You know, I've spoken with people with Tourette that are part of lower income backgrounds where the parents, they may get the Tourette's and see that it's a challenge. But it's not a prioritized challenge. You know, you got to put food on the table, you got to get a job, you got to, you know, get good grades, like, I know that you have Tourette's, but let's talk about the bigger things that we have going on as a family. Man, I don't know if any of that affected you. But I think it underscores the fact that these challenges are really not talked about as part of our broader community, as much effort as we put into teaching people to be advocates, and the wonderful work that we're doing there, I think we can be more sensitive at times to how challenging that can be, and the barriers some people have to fully embracing that embracing what they need to be successful, owning them, you know, their identity themselves owning their success. There's a lot of challenges there that I think we don't talk about,

Michael Chichioco:

I think you bring up an interesting point, it told me, you know, involved with a TA. And if we're coming from out this perspective of how do we support the community, I think something that I've noticed is, I'll tell the story. I was at one of the conferences, and I was one of three people of color, let's not dance on the bush, let's just say how I did. So I was there. And one of the speakers was kind of starting a talk. I don't even remember if the talk was about only remember the first five minutes lead with something along the lines of talking about okay, as people with Tourette Syndrome, they face a lot of misunderstanding and sight. But then started with what what you need to remember is that everyone in your family, they'll understand, and they all support you always. And I paused I didn't even let the guy continue. Until he said, well, that's just not true. You know, and for me, it was very culturally charged, because I was like, I know, this is not your intention. But I was like, listen, like, in my culture, this was not seen as a good thing. My parents did not want to necessarily right away help they did. You know, there were definitely some family members who took them years to come around. And they said probably my biggest challenge was navigating home. Not even not necessarily navigating school, navigating school and all that was hard. Don't get me wrong. But what was even harder was knowing that I can come home and feel safe. Whereas there's a lot of families I see where Yeah, okay, home is, probably the only place where their parents understand. And that was at a conference hosted by the TA to

Michael Leopold:

And such an under appreciated point there. support young adults. I was just like, come on, like, we need to It's complicated because we do know on the one hand that be better about this. Because, first of all, that makes generalization but also just understand the breadth of our Tourette is seen across all cultures, ethnicities, it's seen experience. And not everyone's family is going to be so eager around the world. Anyone can have this you know anyone from to reach out and then get all of the resources. That does not any group can have Tourette However at the same time, it's mean that there's nothing we can do for those families. But you so under diagnosed and yeah, I'll say it like the research is know, just setting up conferences and setting up things like that. Some families are not going to go to those and largely all done on little white boys for Tourette for ADHD, and how do we outreach these communities? Or do they want these outreach? Or how can we come up with different ways to Western, you know, American boys. So while we know that, reach more broader, diverse families and different yes, okay. It tourette can be it can come up anywhere in the communities. And I think that's something you can see that in the programming, you can see that in the type of resources world, in any culture, so much of our understanding of it or that are available, because it's catering to a specific awareness, even the statistics around it, the boys being three individual. to four times more likely to have it in girls. All of that is it comes from a context of well, but we did our research on you know, in America, American University is looking at the boys that happened to come in to the research centers or to their

Michael Chichioco:

Yeah, I mean, I think in general, we talk doctors and got that diagnosis. It's tough. It's like we're in about this in medicine a lot. When it comes to identity some ways building a ship. It's already set sail in the sense patient physician concurrency, the very simplified way of that we have the TA and J CTS. There's Tourette organizations describing that literally is just when your physician or around the world that are doing good work. But it's almost like there's a challenge now because we almost never wind because a someone you're talking to someone that you can relate to. lot of the people that we want to help were either never So either looks like you, or has the same walk of life, you feel diagnosed, or they never found us. They never found these like you can trust them more you feel like you can relate to what communities, or when they do find us. This is something we talked about, I think at the conference, we may not have an they're saying. And you feel like you want to listen to what article about Tourette that's in their language. So how do they they're saying. I don't really know any, like staff or leaders even how can we engage in the conversation? There's a lot of within the TA or many speakers that are Asian, like I really challenges there with building some of that ship that set sail already. And I would love if if there's any any specific thing trying to name you, a staff member that has worked in the TA Things that you have noticed, you go to the track conference in the last 10 years, since I've been involved with speakers, and you say, You know what, it is really missing a session on maybe I can maybe one, there's not a lot. I mean, that's the blank. Or I could really use a support group around XYZ, anything like that come to mind where there's like a glaring gap very thing, right there is representation we're reporting where you think we could do better as a community? in our community, whether that's the physicians, or our different I think we undersell how important representation is resources, and different senators who are leading these sometimes representation is really important. Just seeing groups. I mean, it just it is what it is, if you have a parent, who is from a completely different cultural background, and completely different experiences and thoughts and someone that looks like you and has been through experience beliefs, trying to tell a family who is completely different cultural beliefs, how to raise their kid, I mean, you're not means a lot, even if it's the same talk, if you made the same gonna get anywhere. It's just completely different. And it's not, that's not a fault of anyone. But I think for me, I love the conferences. I like I love the community. I love what I learn. I love meeting with other people and being in a space in which I don't feel different from a Tourette standpoint, but I absolutely feel different from a race ethnicity standpoint, where I'm like, Yeah, I definitely still feel like my experience is still on the outside now, just in a different way. talk on how to navigate school systems. But if that person is of color that's different. And the example of La Santa is, and this is where I'll come back to intersectionality. The idea of your different identities interacting with each other and intersecting with each other. It's different when you know that you're already a minority and the standpoint race and ethnicity. And then now you also know that you have this label of being disabled or having Tourette's or whatever label you want to use. Now you're in school, you're going up to a teacher, and you want to ask for accommodations for Tourette's. And you know, you're different already just based on Western color, it's a lot harder to ask for accommodations. And then let's say you're not getting those accommodations, it's even harder to now feel like you want to advocate because now you're trying to overcome multiple areas of like, okay, I'm not like you I'm different. And I think that's something that we'll talk about. I think that's something where having representation will matter. Because if someone from my background, someone who I know has been through some of the things I've been through, culturally, racially speaking, is telling me, okay, go to an institution and talk. I can trust that more, because I know that you are thinking about what I'm thinking. And it was interesting, because a few other people that I competence that were of color and talk to them afterwards, we were like, yeah, like the programming is skewed to a certain type of experience. And it's nothing against that experience. But we need to remember and be careful and culturally sensitive about other experiences that are out there that just don't have the voice or representation in our community.

Michael Leopold:

The representation piece is really important, I think of being a kid and just the need to have a role model that you can look to. For me as a white guy in America, it was easy to find adults that were white and male and had Tourette's and ADHD. I could look anywhere, finding those people was never was never a challenge. The point he made around people and other ethnicities coming to the conference, giving the talks being the spokesperson, and the attendees see that, you know, it has that effect of Oh, I could be you or I can relate to you or I take you seriously you get me you understand my experience. I think it's so important. At the same time, I want to be sensitive to the fact that the burden is not all on you to build this culturally diverse culturally aware perspectives and advocacy on Tourette. I mean that burden is on all of us. And I shouldn't even call it a burden. It's a responsibility of all of us. So like on the one hand, it is extremely important to have a diverse speakers at conferences and diverse advocates going to schools and becoming Youth Ambassadors. On the other hand, I think all of us play a role in shaping Tourette advocacy and presenting and highlighting a more culturally comprehensive view of what Tourette can look like. A topic that comes up in a lot of these podcasts I do is the idiosyncrasy of Tourette, the various mixtures of tics, we each have the individual differences in CO occurring conditions that we have have, I think we're good at addressing that are decent at that. The next frontier is ethnic, cultural geographic variances that I think all of us can can talk about that more you know, and bring those examples to light with what I'm hearing is something I've tried to do in my presentations is mentioned this, I make a point to say that whether you get diagnosed or the support you get, as a student in school, or how easy it is for you to get a diagnosis, accommodations, et cetera. There's so many factors that go into that. It's not as simple as just going and finding a doctor, for people in rural America or rural parts of the world that can be difficult. Do you have any thoughts on how people like me, a white allies, advocates, people with Tourette can do a better job of bringing in more that that culturally well rounded perspective of Tourette? Is it simply a matter of highlighting the diverse experiences and stories? Or is there more that we can do?

Michael Chichioco:

That's a great question that I, you know, I wish I had the answers to that. But by talking about it right now, but the problem of race and ethnic representation and an equity, that's not exclusive to Tourette Syndrome, right. I mean, that's just in our country that's in our world. That's, that just exists everywhere. So and I think that's what's difficult, because really, what we're asking is not just for the interjecting, we need to say, Okay, how do we deal with, you know, racial and ethnic inequity in our country? Right. And that's going to really depend geographically where you are right? It's gonna be very different. On the West Coast, East coast, midwest, in the South Bay, it's gonna be very different. It's a challenging topic, because across the whole country, we are dealing with that, within the tourette community specifically, wanted to get understanding this is not going to happen overnight. This change is not happening overnight. I think right now, very first step is Larry just talking about it? I've, you know, talked about it with you with a small group of people. But I don't think we're there yet. I don't think we've really talked about it that much. We need people to know that this is a problem. When we are thinking about serving our community, we need to serve the whole community. I mean, I think, from a geographic standpoint, from a TA standpoint, the TA is very strong in certain areas, and is strong in certain geographical areas. Like I think my presence in the East Coast is really strong. I think the presence in the West Coast is a lot less. And I think it really just starts first, but just Okay, let's really thorough when the, what is the composition of our current active community of the team? Where are all of our centers of excellence located? Right? Who are our patients that are coming in? Where are our family? Like, who's our leadership for all the support groups? What are their identities? Right? What are the socio economic status? Let's just understand where are we? Because I don't even think we're there yet. Right? Like, before we even talk about solving a problem or fixing a problem, we need to know what the problem is, like I can say this anecdotally. Oh, I feel like there's not enough representation. But I don't know the number. I don't know. But I think first it's really just understanding the problem and talking about it and really bringing it to light.

Michael Leopold:

It does, it does. I had an HR background to work in HR consulting, and I remember learning in grad school that a professor put it while it was we're talking about building more inclusive organizations, the lecturer of the class was Chief Diversity Officer at was at MetLife. It was an insurance firm. I remember her saying that it's not as simple as just Okay, let's offer these benefits. You can't jump to the chase, you have to understand your people first, you know, do those pulse surveys, the engagement surveys, look at the demographics and trends of your organization. You have to know your audience, you know, your employee population, before you can even know what the challenges are and where to allocate your efforts. I think that this is really part of the solution is showing more of the faces telling more of the stories. I'm fine with my Tourette these days as an adult my ADHD causes more of a challenge in my life. And Mike my tics do Yeah, Twitch, and it does cause me some some chronic pain. It can be embarrassing at times, but for the most part, I'm privileged and that my case is more mild. It's the CO occurring conditions, that can be a bit of a challenge sometimes. And I think the more people can see that, you know, and see those different and treating the patient holistically. Because for other people, it's different. You know, we I'm sure we both know, people with Tourette where it is the text that are the most most prominent challenging feature is really getting to know each person for what they bring, and then taking from the medicine what we need from it. And from the social side, the psychological side, embracing that to you know, I can see Tourette as a superpower while simultaneously saying, Yeah, you know, it causes some problems, and I need to see a doctor about that. It's bull That's complicated. Any other thoughts or questions here and things that are on your mind?

Michael Chichioco:

Really just thank you for inviting me. I think it's very nice to talk about these things. I think I'm always happy to talk about this stuff. And I think it's important about representation about advocacy and also about, you know, coming up with solutions like before Yeah, I think as a community, we always have to jump right away to solution. Let's just do something but it's not that easy, right? We need to understand what we're dealing with, we need to understand the problem we really need to understand to really come up with a nice, thoughtful, thorough solution that actually works. So you know, I appreciate the conversation. And thank you for having me.

Michael Leopold:

Awesome. Well, I like to end these with a question that I give to everyone. What's one piece of advice that you would give to someone with Tourette and I know that kind of, there's a lot that could be said on that. What comes to your mind when I asked that?

Michael Chichioco:

Listen to and trust yourself, you know, so much of our experience in our lives with Tourette's is is shaped by other people. It's shaped by this person that made fun of me, or the person who said they couldn't do this. Those people who said I could never be XYZ, all of that crap that you have to deal with out there. And it's very easy to forget about, literally yourself and you think, how do you feel? What do you think? What do you want? You know, even when we're talking about advocacy, sometimes, you know, I'll sit down and ask myself, like, I'm speaking about apologetics, or I'm going to give a talk. Am I giving this talk for myself? Or am I giving it for other people? And that's something I have to ask myself, and sometimes it's a mixture of both. But reminding ourselves that we can do things for just us. Sometimes we advocate because other people don't understand. Like you had said earlier, it's not always our burden and responsibility to do that. And I think being kind to yourself and being like, you know, it is okay, to just be like, You know what, I know that I'm fine. There's nothing wrong with me. If other people don't want to accept me that's on them. And that's okay to put that responsibility in that burden doesn't always nice. I think it's just a nice reminder to remember that just trust yourself, and listen to yourself, because I know it can be very hard to do that when all this is going on around you.

Michael Leopold:

Absolutely. Well put. Well Michael, thank you so much for your time and good luck in med school.

Michael Chichioco:

I get Thank you. Thank you.

Michael Leopold:

Take care. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment