Show Notes
Jenna Giesecke joins Marissa to share how she developed and adapted to a tic disorder during the COVID-19 pandemic. They discuss transitioning to college, requesting accommodations, and finding a place in the disabled community. Tune in to learn more about the intersection between disability and mental health!
Jenna Giesecke is a junior at Stevens Institute of Technology majoring in Mechanical Engineering. She is the Philanthropy Chair and Sisterhood Development Co-Chair in her university’s Theta Pi Alpha chapter. She is also an accessibility advocate for Stevens’ Diversity, Equity, and Inclusion committee.
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Connect with Jenna!
Tiktok - https://www.tiktok.com/@jennana44
Key Points:
2:15 - What was your experience Ike moving to college in the fall of 2020 with COVID-19 restrictions in place?
3:40 - How did your tic disorder develop?
5:19 - How did you process the new diagnosis as part of your daily life?
12:25 - Did you try new medications to suppress the tics like and how did you adjust to side effects?
15:08 - What was it like asking for accommodations for the first time in college?
18:28 - How did you find interacting with professors and your school’s disability office?
24:45 - Increase in tic disorder symptoms amongst adolescents during the COVID-19 pandemic
25:45 - How is anxiety related to your tic disorder and have you found any effective self-care methods?
27:58 - Have you joined any online communities or met anyone else with Tourette’s?
33:31 - Do you have advice for anyone with a tic disorder or Tourette’s?
Transcript
kMarissa: On Legally Blonde & Blind. I talk a lot about being blind, but I think it's great to talk with other members of the disabled community. Especially for me, those who developed the disability rather than being born with one in today's episode, my amazing friend, Jenna will join us to share how she developed and adapted to a tic disorder during the COVID-19 pandemic. We will talk about requesting accommodations, transitioning to college, and finding a place in the disabled community. Tune in to learn more about the intersection between disability and mental health.
*Intro music*
Welcome back to another episode of Legally Blonde & Blind. I am so excited to have a very special guest. She has known me since my sulfur sparkly hat days. Welcome.
Jenna: Hi, thank you so much for doing this episode with me today.
Marissa: I really appreciate you being willing to put yourself out there and talk with me today. We have a lot to get to, but first I want to give you the chance to introduce yourself. Talk about what you're interested in, what you're studying, where you're from, et cetera.
Jenna: I, so I'm Jenna. I'm a sophomore studying mechanical engineering at Stephens. Like hobbies. I love doing anything arts and crafts related, like sewing and painting. I like picking up random hobbies, like crocheting, embroidering, and cross-stitching. I like to run, I did cross country for four years.
Marissa: We talked about Jenna. She's one of the most creative and talented people I've ever met from home in high school. She made her own prom dress.
Jenna: Yeah, that was fun. It was like a Cinderella dress.
Marissa: It was huge. I have no idea how you did it.
Jenna: Oh yeah. My sewing machine hated me. There were so many layers.
Marissa: But anyways, like get started. I know that we were going to talk a bit about how your server developed and how you learned to manage that. So to get started where that whole story began. What was it like for you to move to Stevens in August of 2020 when social distancing guidelines and other restrictions were still largely in place?
Jenna: Yeah, it was very rough. Like, it was so hard to meet people because the orientation was completely online. You had to make reservations ahead of time to go anywhere on campus, like the dining hall or the library. So it was just so easy to stay in the dorm all the time.
Marissa: You had to quarantine a lot too. Didn't you?
Jenna: Yeah. Because my roommate kept having contact with people who got COVID. So, I didn't know anyone from my high school, and I did end up finding a group of people, but the group was so large that I just got drowned out in every conversation and it wasn't close enough for them to like, be in an equal subgroup. Anyways, it was very isolating and stressful.
Marissa: I think what can happen is like when you first moved to college, people tend to congregate and like these huge packs of like 20 or 30, but I always find it hard to try to make genuine connections within groups that large. But, so how did, so I know that your tic disorder started within this period of time when you were moving and adjusting to college. So as much as you're comfortable with sharing, how did that emerge?
Jenna: So I had extremely mild twitches for years before I just thought it was something that humans just did. That was just what everybody did. And a few months before I went to college, my boyfriend pointed them out to me and said, I should probably go to the doctor for this. And I was like, nah, I'm probably fine. So then when I get to college in September, it's just, I just started switching more often to the point where I would sometimes complain about it, but still not enough to warrant worrying.
And then October, it just gets so much worse. Like it goes from like 30 times a day to literally hundreds and like a week, the week leading up to my neurologist appointment, my mom told me to start counting how many times I did it, how many times like I twitched. And it went from like 30 to hundreds over the course of like a week. And this was within August, or September of your first year of college. And it was October.
Marissa: And so when you went to the doctor, how did you react to that initial diagnosis of a tic disorder? I know that there's a distinction between like a tic disorder and Tourettes where you have to have it for a certain period of time, but what was it like hearing that initial diagnosis?
Jenna: Yeah. So at the time, it was just the tic disorder. So I was weirded out because I didn't know what a tic disorder was, but I did feel relief knowing that they, the twitches had an explanation behind them and it wasn't like something dangerous, like a heart condition or anything crazy, like that.
Marissa: Yeah, you're right. That's good. That's good to hear. At least.
Jenna: Yeah. And at the time it was just a tic disorder, which comes with the assumption that it'll go away in a few weeks or months. It wasn't Tourette's yet. So, I still had hope.
Marissa: And what was it like going from having, I guess, no disability whatsoever to having something that's rather visible to pretty much anyone you interact with?
Jenna: I started feeling like I had something to prove because I feel like if somebody doesn't know what Tourette's is, and they saw me twitching and making weird movements and sounds, they think I was like, had some mental illness, like impairment or was on drugs or something. Tourettes does not have any impact on a person's intelligence, but I still sometimes feel like I have to try extra hard in school. So people won't think I just can't do anything.
Marissa: What was it like talking to your family and friends about it?
Jenna: Well, my parents took care of explaining the whole thing to my family, but when I talked about it with friends, I tried to keep it light-hearted like, I just am like, “oh yeah, I say and do weird things. Like I make weird noises and Twitch a lot. It's a thing.”
Marissa: I think that relates to my first episode of this podcast. I talked a lot about how humor helps in terms of talking about and accepting different disabilities. And I think we both can relate in the sense that we could both, like, we could both joke about it because sometimes you're, I remember sometimes when we would hang out, your tics would just be perfectly timed.
Jenna: Yeah, I got some funny word association tics.
Marissa: Yeah. Yeah. So I, I think it, I think having that sort of lighthearted attitude towards it can be very helpful, especially when you're first trying to navigate those interactions because I think people are very, they don't want to offend you. Right. So I think sometimes people are very uncomfortable talking about it because they don't want to say anything. That's going to set you off or make you more upset.
Jenna: Yeah. Like if I tic and it's funny, like, I don't mind joking about it and I don't mind people like making jokes about it.
Marissa: And then I guess my question for you too is, so I know you had some verbal tics. I know they're not as prevalent, but, so how did you handle verbal tics and specifically cursing tics?
Jenna: Well, I was in denial that I even had vocal tics because it just started out, not with words, but just saying like, “uh,” a bunch of times. And like I even talked to my mom about it and she was like, “that's not how vocal tics develop. You don't have vocal tics.” Meanwhile, I just kept saying, “uh, uh,” and then it eventually started turning into actual words and sometimes even phrases.
And it definitely was - I don't want to say worse than the motor tics because the motor tics, I would like to hit things - but like, it was definitely, I would become more of a distraction to conversations. And if I was in in-person school, my vocal tics are more distracting to other people in the classroom.
AI never cursed before getting Tourettes. it's a myth that, oh, if you have it as a tic, that means you say it a lot. That is not true at all. I never cursed until I got Tourettes. And then now I just do it uncontrollably and it's hard to do in public, even if you say these phrases that are rather socially unacceptable. I still suppress so hard when I'm in front of children.
Marissa: Oh yeah. Like you don't want to, you don't want to say it in front of them. But I think what's good at least is that I mean, at least I can always tell, like you were having a cursing tic, you never sounded angry. So I think it's really easy for people to pick up on, Hey, she's not trying to curse me out like this out of the blue. When you have a cursing tic, it's a very heightened tone of voice.
That's not even like your thing. So I guess we already talked about this a little bit, but could you elaborate on like, so how was it adjusting to Tourettes as a part of your daily life? What was it like going from, this is something wrong with me. This is a new diagnosis to this is a part of my daily life.
Jenna: Yeah. So it was pretty hard because I went 18 years of my life being completely normal and all of a sudden I struggled to do basic things. Like when I'm doing homework, sometimes I'll just throw my pencil across the room or, um, like I just cursed randomly. My knee buckles on me a lot, so I fall over a lot. So it's, it's just like struggling to do basic things. Sometimes I have to wait before I curl my hair or use a knife because my hands are shaky. And I had to pay more attention to what I was feeling and what was going on around me, because there are so many triggers, like loud noises, feeling anxiety, being in physical pain, or even just being too cold can just set off my tics.
Marissa: Yeah. Those really interesting little things that you wouldn't think about could set it off. I remember even like, if we go into a restaurant, you have to wear noise-canceling headphones. I don't think people are intentionally trying to set you off, but it's like, if someone's screaming, like we went to a restaurant once where there is like a birthday party and they had like these, they had like the noise makers inside the restaurant. Now that was obnoxious.
Jenna: That was so bad. I wish I had my headphones.
Marissa: And I don't think you had your headphones with you, did you know?
Jenna: No, I didn't. So I just had to, like, I was just covering my ears and just trying not to, I'm trying not to go crazy,
Marissa: But I think it's, I think it's still amazing that you can use a knife, do your makeup. She even cut her boyfriend's hair, but when you're concentrated or when you're concentrated, your tics get much less severe.
Jenna: So when I was doing my boyfriend's hair afterward, he was like, “you didn't motor tic once.” Like I had some vocal tics, but I didn't motor tic one time during the haircut. I can still drive cause I'm focused on the road and it dampens my tics enough to where it's not dangerous.
Marissa: And so going along with the process of finding it out as like an initial diagnosis to more of just a part of like your life at this point, what was the process like when you were going through like different medications, trying to figure out like a way to suppress the takes and how did you deal with those side effects associated?
Jenna: Yeah, that was rough. The first medicine tried I put me to sleep all day. Everyday Second medicine didn't do anything. Those were when they didn't know the cause of the tics yet. So the first medicine was mainly an anxiety one. The second one was more geared to people with epilepsy and then they were more geared to specifically Tourettes, So the third one worked for a little bit, and then it wore off. So we kept upping the dose until the dose just became too much for my body. So then I started passing out. I started zoning out of conversations all the time. Like it would just look like I was just not there in the head for like a few seconds at a time, just so often.
Marissa: I remember that happened when we were playing monopoly.
Jenna: And that was that you guys had to drive me home because I was so dizzy.
Marissa: It was really scary, but I can only imagine what that had felt like for you at the moment.
Jenna: Yeah, no, it feels just like completely zoned out. You can't move, you can't talk, you just have to wait it out and you're fully conscious when you're doing it. So it was just scary. You just almost feel like frozen in place, I guess. And then the fourth medicine, I was only on for two days because like the first one, it just put me to sleep. So I have not found a medicine that actually works. I'm just going without medication right now when I'm just on a waiting list for behavioral therapy to see if that might help.
Marissa: That sounds like a good idea. I'm sure too, with school starting this year, you don't want to be put in the position where you're trying all these new medications because I can only imagine how difficult it would be to concentrate and do homework and do exams if you're zoning out or feeling like you're gonna pass out or sleeping all that.
Jenna: Yeah. I was on the first medicine while I was at college last year and uh, for a whole week I could barely function.
Marissa: Yeah, that must've been, that must've been extremely challenging, especially being away from home the first, like for the first time.
Jenna: Yeah. I was just by myself dealing with this whole new disorder. That was just, that was crazy.
Marissa: I wanted to talk a bit about how this has played out for you in college. I know, I know you went from a position where you never really had to ask for help in school because you’re a low-key genius. But, so what was that like for you having to ask for accommodations for the first time? Like, did it make you nervous?
Jenna: Yeah, I really was the type of person who just never asked for help. So when it got to the point where I did need accommodations, I kinda just ignored it. S when last year I kind of needed commendations, I just didn't ask for it. So when I had exams on a bad tic day, I would just struggle so much through them. I could barely concentrate. I was at a very clear disadvantage, and yet I was still like, “I'm fine. I can handle it”
Marissa: I remember this very well. Her boyfriend, Adam and I, launched a very subtle campaign to get you to get accommodations.
Jenna: Yeah. Because like I had to do my head like that, if I asked for accommodations, I would be weak or too needy. Or like, I wasn't disabled enough to warrant accommodations because I technically can go without them. I just suffer a lot more.
Marissa: But that’s literally the point!
Jenna: Yeah. So it took me a bit, but I eventually did it and it's been super helpful.
Marissa: I made a post, a few, a few, I think it was like a month or so ago about like email templates at the start of the school year for people that were requesting accommodations. And I remember Adam pointed it out and he was like, she probably made this because of you and I, you might've been part of the intended audience.
Jenna: Yeah. I used that outline you posted.
Marissa: Oh, that makes me so happy that people actually used it. But, so what are some of the accommodations that could have helped you or that could help somebody else with Tourette’s?
Jenna: It's very hard to stay quiet for long periods of time.
So when someone is suppressing, it gets really mentally exhausting. And when you stop suppressing, you can get very ticky. So if you need to, let your tics out, you should be able to leave the classroom whenever you need to. And just come back. Tics can also be really distracting to not only the person with the disorder, but also to people around them. So, some accommodations I got are taking exams in a separate room and getting extra time on those exams.
Marissa: That makes sense. That's not only a way to like, avoid distracting other people, but you don't have to worry about masking tics during a test. Yeah. And I'm sure it was hard for you going from zoom where you could just mute yourself or turn off your camera to being in person in a lecture hall where you can’t avoid like other people hearing your tics.
Jenna: Yeah. I whistle a lot and do this weird sniffle hiccup kind of sound a lot, but like, it's not too bad. Like I haven't screamed the F word in class yet, so.
Marissa: That's good at the very least, I think people, I mean, especially with the flu season, people are sniffling and coughing so much in class, anyways. I don't even know if it makes that much of a difference. It's unbelievable to me. I'm like, wow, there are so many sick people in here right now. And I know it's not COVID. It's still, it's like, oh, wow.
Jenna: Yeah, because like everybody at my college is vaccinated. So it's like, it probably can't be COVID.
Marissa: So many sniffles. And so what was that process like for you formally requesting accommodations? Did you find your school's disability office helpful or responsive?
Jenna: Yeah, it was so much easier than I thought it would be. I kind of had it in my head that they would be like, “oh, you have to prove that you're disabled enough to warrant this.” But it was not like that at all. Like I literally just emailed the disability office. I told them what my condition was, told them the accommodations I probably needed. I used your outline for that bit. Then they emailed back to set up a time for me to call them. So then I talked to the disability director over the phone and he just told me how to fill out the forms and just said that I needed a doctor's note. So I filled out the forms. Got the doctor's note. The disability director just emailed all my professors and boom, accommodations.
Marissa: There you go. That's great. It's nice to hear that it was such a seamless process for you because I think we don't think about enough how quickly you can go from not needing accommodations at all to needing it. I think people think when you think generally about disability and accommodations in the classroom, you think like, oh, it's something you're born with and you need right from the start or you don't need anything at all, but I think your case and many others show that you know, things can develop over time and needs can change over time. So it's really important to have transparent and responsive systems so that you can get your needs met as quickly as possible.
Jenna: Yeah. Because like most people with Tourette's, it develops in childhood or early adolescence. And I think the latest age that you can be diagnosed is like 18 years old and I got it at 18 years old.
Marissa: So, so you were right at the cutoff?
Jenna: Yeah.
Marissa: And then finally, what was it like telling you, well, I know that they emailed your professors, but did you have any conversations with them about, “oh, Hey, I have Tourette's. This is what it looks like?”
Jenna: Yeah. So not all my professors already got the email, so I decided to wait till the end of every first class to go up to the professor and introduce myself in person. But the thing is that when I was filling out the form for the disability office, my Workday student, which is like the app that we use to schedule classes. It said that I had one professor for multi-variable, but they switched it after I had sent the forms to the disability office. My multivariable teacher was not informed. So that led to an awkward situation.
I was whistling in class and he was like, “All right. Whoever's phone is can you turn it off?” And I didn't process that. He was talking about me. So I was just looking around the room, being like, whose phone is that? And then it was like, “oh my God, please whoever's phone that is, turn it off. It is extremely distracting to the class. Like, it sounds like a whistle.” And when he said it sounded like a whistle that’s when I was like, “oh my God, that's me.” And I had to just announce to the whole class that was like, “yeah, I got Tourette’s, I can't control that.”
Marissa: And he apologized afterward, right?
Jenna: Yeah, because this teacher, he was a TA last year. This is literally his first year professoring and on his very first day of being here he calls out a girl with Tourette’s.
Marissa: It's nice that he took responsibility for his actions and acknowledged the fact that it wasn't really fair with him to call you out like that. Like, people shouldn't have to announce to the class, “Oh, Hey, by the way, I have Tourette’s.” Shouldn't have to be this whole presentation if you will.
Jenna: As soon as I said that, he looked so scared. He's like, oh wait, I'm no longer professoring anymore. I'm not tenured. I'm screwed. Yeah. And he said he didn't get an email and he didn't get the email because Workday just switched my professor last minute. But he was the only one that I had a bad experience with. With every other professor, I went up to them after class and I was like, “yeah, I'm Jenna and I got Tourette’s. So if you hear someone whistling back there, that’s me. It's not a phone.” And they were like, “you're all good. Don't even worry about it.”
Marissa: Yeah. I think most professors are pretty understanding, which is good. I think as long as you're transparent and you talk about it, like right from the beginning, I think usually they're, they're pretty understanding about needing to make arrangements for tests and all that. And you get extended time on tests too?
Jenna: Yeah. 1.5 times.
Marissa: Yeah. That makes sense. If you throw a pencil across the room, it’s going to take you some time to go get the pencil.
Jenna: Yeah. But the thing is that I don't need it every day. I only needed it on very ticky days. So it's one of those things where it's like, it's better to have it and not need it than need it and not have it.
Marissa: Yes. That is the ultimate mantra with accommodations, it's better to have something down in the system in case you need it. You might not need it every time, but it's good just to have it there.
Jenna: Yeah. Like if I'm not, if I don't have a ticky day, I won't use the extra time on that.
Marissa: And so moving on to talk a bit more about the mental health side with the tic disorder. I know you said that there has been a recent uptick, no pun intended, in psych disorders and tic disorders specifically amongst adolescent girls. Could you talk a little bit about that and that lake?
Jenna: So there were some studies, so during the pandemic and lockdowns, tic disorder symptoms fully doubled in children and young adults, especially girls, as opposed to guys, which is weird because guys are like three to five times more likely to develop ticks.
And there's a lot of debate on why this is, but the leading theory is that stress and isolation are related to the pandemic set-off tics. Tic disorders and Tourette's they're both hereditary and environmental. So if somebody with a family history of tics, like my uncle, had tics when he was younger and somebody with a family history of tics gets really stressed. The stress can make the tics so much worse to the point where the disorder becomes apparent. And then once you start ticking, You just can't stop. Like you set it off and you're done for, you know.
Marissa: Even like what you said, how you had a bunch of minor twitches when you were younger. I guess it's like, if people are more susceptible to it, if some major stressor like the pandemic comes along, it can really make things worse. I know you touched on this a bit, but so like, how has your tic disorder related to anxiety, especially that caused by the pandemic?
Jenna: Especially at the beginning of the pandemic, I was really stressed out about everything that was going on, but it wasn't enough to set the tics off. But when I was sent to college, knowing nobody seeing nobody, a completely new city environment just pushed it over the edge for me.
Marissa: So it's related to like, so if you're more anxious about something like a test or whatnot, the ticks will in turn be more intense.
Jenna: Yeah.
Marissa: And so, like, have you found any, any methods to, I guess, have you found any self-care methods that have been effective for you in terms of lowering that stress? I know it's. I know when you have an anxiety disorder, people will say things like, “have you ever tried mindfulness or meditation?” As if that's going to solve everything, but have there been any sort of techniques that have helped you along?
Jenna: Yeah, the thing is anxiety is not always like “oh, I have a test coming up, let me be anxious about that.” My anxiety is very, like, I don't know, like instinctual, like it's very sensory-based. Like if I hear loud noises, or feelings, I don't like, like that's more what my anxiety is based on. So taking showers really helps a lot. Like I barely ever tic when I'm in the shower. And then just doing something that focuses me, focuses me on something. Like if I'm not super ticky, I can paint my nails or do my makeup. Just something that's distracting that I can do.
Marissa: That makes sense. Do you find that with homework too? Like if you're doing schoolwork, do you find that you have less takes because you're really concentrated?
Jenna: Yeah. Like on really bad tick days, it doesn't matter how concentrated I try to be. It's just bad. But on most days, once I get going on my homework, I'm pretty much set.
Marissa: After you developed your tic disorder, did you join any online communities or meet any other people with the condition? And if so, how did that impact your experience?
Jenna: I don't know anybody in person with Tourette’s. Like I met some people when I worked at Gitanos. There was a guy that came in and he was like, “oh yeah, I have Tourette’s but I take medicine for it. So I don't like tic anymore.” And so I've never seen somebody in person with tica as severe as mine, but I did use to watch online creators, like this trippy hippy or sweet Anita, and they really helped me see people with the same condition with this dealing with the same things that I deal with. So it was just really good in like, knowing that I'm not alone in this. I think it's funny too because I remember I even got some videos on my FYP about it, about the onset of tic disorders amongst people within your age group.
Marissa: And it is very creepy how accurate that FYP of tick-tock is. I've talked about it with some other guests. We would get recommended like blind or albino creators, even if we didn't really explicitly search that on Tik Tok.
Jenna: Yeah. I got this trippy hippy videos on my for you page before I even had the tic disorder, like before I even knew what a tic disorder was, I had her come up on my new page and I was like, “That's a strange condition.”
Marissa: So now algorithms can predict the future as well. That's slightly concerning.
Jenna: Yeah.
Marissa: The thing though, is it connects you to people that you wouldn't have otherwise met. Yeah. Like it's creepy, but it's cool that you get to, at least for me, it was cool that I got to see other albino creators on tik tok. And so finally, we've touched on this a bit, but I know that you moved back into Stevens a few weeks ago. Things are a lot different now, obviously because everyone on campus is fully vaccinated. So how have you found that process transitioning again to in-person classes and social events with the tic disorder?
Jenna: Oh, it's so much better than last year. Like I've been at college for about three weeks now and I already have an amazing group of friends that I feel comfortable with and they don't mind my techs. There was one time I started walking backward and one of them just caught me. So I stopped walking backward. I've been able to actually join clubs. They had a reorientation for sophomores who didn't get a real orientation.
Marissa: Yeah. That makes sense. And that you actually know where to go on campus.
Jenna: Yeah. There's also other fun stuff, like around Hoboken, like the Italian street festival, like I want to. And it's really nice getting to dress up into outfits every day and just get better at makeup. Because I get to do that more often. It makes you feel like you're ready to take on the day. You feel so much more productive. And like my roommates have the rundown of the condition. So if I'm ever super ticky, they're like, they're not, not worried. And they know not to be too loud or anything like that.
Marissa: So that's good. I don't know if you've had this experience, but at least for me, I found that one thing that it's not necessarily a bad thing. It's just something I wasn't expecting. So once you, at least for me, because I had our, like our friend group for those who don't know, we've been friends since I've known Jenna since 3rd grade. And the majority of our friend group has been together since middle school. So everyone knew about my albinism, right? So it was a bit strange for me going from having everybody in my hometown know about it and not really needing to ask any questions to pretty much having to explain it a lot more often. And it worked out well for me because this was after I had started the podcast. So I guess I was more used to it anyway. It was an interesting transition. I noticed. I don't know if you had a similar experience.
Jenna: I just had to be like, “oh, I have Tourette’s” more often just because you're around so many new people. Like when I first got here, um, I didn't immediately tell people. I waited till somebody asked or waited until I did more extreme ticks and be like, “oh, I didn't mean to do that. I have Tourette's.” But that led to some people being like, “yeah, I noticed you doing weird stuff, but I didn't want to say anything.” So to avoid situations like that, where there were people who are like, “what is she doing? Why is she acting so weird?” I just tell people like right on the spot when I meet them.
Marissa: I agree. I found that in my experience, too, if you just share it right away, it will lead to the least amount of awkward encounters. And just so everyone's on the same page about it.
Jenna: Yeah. But everybody's been pretty understanding.
Marissa: So yeah. It seems like you have a really good group of friends right now. And Adam and your family and our friends back home have all been very supportive and understanding. So I'm sure that's helpful. And so before we go, do you have any pieces of advice for anybody who is going through something like a tic disorder or Tourette's, especially as they're looking to transition from virtual to in-person events?
Jenna: You don't have to be self-conscious about your tics. Like any decent human being will accept you and not be bothered at all. Let your roommates know, not just about tics, but also tic attacks. Just in case you have one in your dorm, like a couple of weeks ago, I couldn't stop saying “can I have..” over and over again for like two hours straight. So just let them know in case that happens to you and just make clear with your friends, like what you're comfortable with conversation-wise. Like, do you allow jokes about your condition, asking if you're okay. Every time you hit something or fall over, just whatever you're comfortable with, just let them know. And like, if you need help, like getting, like, if you fall backward or something, like, what are they supposed to do? I didn't warn them about the walking backward tic. So I'm glad they picked it up and caught me when I started doing that.
Marissa: Yeah. You should look into tour guiding them because if you're walking backward, it's your asset. But no, I think the expectations that you've set with us, like at least, at least in the dynamics in our friend group at home have been very helpful so that we kind of know-how to approach it and it removes sort of a stigma around it. Like it doesn't have to be something that makes you awkward that makes you feel awkward or uncomfortable. It can be something that you can talk about.
Jenna: Yeah. Like as long as somebody doesn't like, mean it, demeaningly like, “oh, you probably can't go to college because of your condition or succeed in life because of it.” As long as it's not demeaning like I allow people to talk about it and I think that's a good way to go.
Marissa: So if you're comfortable, do you want to share like any of your social media handles? I know you do have a Tik Tok that you post on every so often, if you want to share any of that has to do here's your opportunity.
Jenna: Yeah. Yeah so my Insta is just my name (@jennagiesecke) and my Tik TOK is @jennana44. On my Instagram, I don't really talk about Tourette's at all, but on my Tik Tok, well, I do tick in a lot of the videos. I don't always, I don't tick every single video because they're very short videos and ticks are very variable throughout the day. But yeah, I have the most Tourette's content on my Tik Tok and my Instagram is just like pretty normal or just pictures of me just living.
Marissa: Yeah, I'll be sure to put the links in any of the posts I make about this episode so that people can find you and connect with you if they're interested. Well, thank you again, Jenna. I really appreciate you taking the time to do this with me. I know you're so busy at Stevens, and I can only imagine as a girl boss, a woman in STEM, how much work it is for you. So thank you again for putting yourself out there. I know we've talked about this before. For me, blindness was always something that was a part of my life. Whereas for you, this is something that has happened rather recently. So I really appreciate you putting yourself out there and being willing to talk about something that puts you in a bit of a vulnerable spot.
Well, everyone that was Jenna. Thank you so much for listening. I hope you enjoyed today's episode. A fun story about recording was that we did this on a Saturday morning a few weeks ago. I was in my dorm room. And I had thought that if I record in the morning, all the people who were partying the night before will still be asleep and therefore will not make any noise. But at some point in the episode, we're in the middle of talking and I hear this insanely loud laughter. It was almost like screaming. So I was able to cut most of it out. But if you heard a strange sound at some point in the episode, I hope it wasn’t very distracting. It's just at one moment.
My friend Alanna. She was on the show a few months ago. She has an ESA. So she soundproofed her whole room. She has like these, like these foam pads covering all of her walls and she asked me, she was like, “do you want to use this room to record your podcasts?” And I was like,”no, I'm sure it'll be fine.” And then this happened, I was like, “God, I wish I was in a foam room of pure silence.”
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Thank you all for listening. And I hope to see you soon!
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