Natalie - Empowering change in academia and personal growth.
Transcript
Adeel [0:01]: Welcome to the Misophonia podcast. This is episode 11 of season 2. My name is Adeel Ahmad and I have Misophonia. Today I've got Natalie. Natalie is a student at UCLA and is the founder of the Misophonia Support and Awareness Group at UCLA. I'm really excited to have her on because I noticed her student group last year and really see this as an inspiration hopefully for other schools and institutions. You'll hear her story here. You'll also hear me kind of awkwardly realize who I'm talking to since I'd forgotten who she was when we started the interview. I want to also give a quick shout out to another Misophone owned business from the Misolist. Old School Screen Printing and Design offers screen printing embroidery and design services and are located in Lyons, Kansas. If you're at a business owned by a Misophone or employees Misophones, please let me know. Head over to Misolist.com and click the add button. This is how we can support each other's livelihoods. It's totally free. I'm just plugging businesses here that I like to see. And yeah, we'd just love to have a see each other and support each other. All right. Now, here's my conversation with Natalie. Natalie, welcome. Welcome to the show. Good to have you here.
Natalie [1:17]: Thank you.
Adeel [1:20]: Cool. Yeah. So, you know, I usually like to, as everyone knows, like to kind of like start off with kind of, you know, where you're located.
Natalie [1:27]: Right now, I'm in Redwood City, California, which is like the Bay Area, my hometown.
Adeel [1:35]: Yeah, so what do you do for a living?
Natalie [1:38]: Well, right now, I'm a student at UCLA. I'm a third year. I just am at home because of the pandemic, and I could not stay in my apartment, so I had to come back.
Adeel [1:50]: Gosh, yeah, I've actually talked to quite a few students recently. So was the plan to stay in your apartment and just kind of go to school from LA?
Natalie [2:01]: Yeah, like when classes were in person, I had an apartment that was pretty close to campus. I could just walk there. And I had planned to do this interview with you there because I could have had my space, but I had to come back home because my parents wanted to make sure I was safe.
Adeel [2:19]: Okay. And it wasn't because your roommates were driving you crazy.
Natalie [2:22]: No, I don't have any roommates.
Adeel [2:25]: Oh, excellent. Okay, cool. Why don't we start with kind of school. So at UCLA, are you actually familiar that, did you realize that they actually have a misophonia student group there? yeah um it's my club oh right okay all right uh right your name sounded familiar okay we did not prep at all before this call and we scheduled it quite a bit in advance so okay we'd want to talk to you for a while um okay let's let's talk about that um yeah the ucla you want to tell me about what's the name of it um it's called misophonia support and awareness Gotcha. Okay. And yeah, I've been telling, I've been telling students everywhere to, uh, to use you guys cause use your group as kind of a model. Um, tell me, um, how, how it all started. What made you start the group?
Natalie [3:12]: Um, I was taking a neuroscience class for my, um, life science GE and my teacher was getting all riled up about like muscular problems and like how strong people are for living with those issues. Like, um, ALS kind of stuff and like that's very true but I noticed that in that same class they had none of that zeal for most of the mental illnesses that we discussed but no one has that kind of zeal for misophonia and so I thought you know what I'm just going to make my own club so that some people will care and I care and I will I wanted to make a space where people could come and complain about having it and have no one judge them and finally talk to people who understood where they were coming from without any kind of judgment or anger from other people.
Adeel [4:09]: Absolutely. That's great. And how did you start to announce it? How did you get the word out?
Natalie [4:15]: Well... I tried to advertise as best as I could. So at UCLA, there's quite a bit of red tape you have to go through to get a club started. So even though I began work like probably spring quarter of my first year, it didn't really get going until like winter quarter of the next year. But I got two friends to be signatories with me. And that's all you need to start the club. And so from there, I tried to advertise on Instagram. I advertised on Facebook. At the beginning of the school year, there's the enormous activities fair where like all of the clubs have a booth and you all sit in the hot sun and everyone like comes up to talk to you. So we did that. And we got a lot of people signed up that way. And like, I have a weekly email that I send out, but almost none of those people actually show up to meetings, but that's okay. Stuff like that. And like, I tried and
Adeel [5:15]: communicate with like other clubs that are also about mental health try and like get them to support us too but um it's still pretty small right now gotcha yeah and what did you at this uh initial the um kind of the the fair or you know the groups meeting or whatever what was kind of some of the reactions you got was it a lot of um a lot of people who already knew about it were they
Natalie [5:42]: they have it and they real now realize they have it or just kind of a lot of randos asking questions um it's a very like open space like people are very accepting like either people would be like what's that or people would be like oh my gosh you you have a club about this what and like those the second one was like the best one to get because they'd be like yeah we do like come come to meetings and um you know we had flyers that we would give out You know.
Adeel [6:11]: Yeah, this is great. I mean, I'm sure there are people maybe in other schools who are kind of like apprehensive about like, what would the reaction be? Are people going to think I'm weird? But you had a very good reaction. Looks like very welcoming response.
Natalie [6:24]: Yeah, there's like definitely no animosity towards us. It's just we aren't very big right now.
Adeel [6:31]: Right. Yeah. Well, these things, these things kind of grow. I mean, just like this podcast or anything else, the conventions. So tell me about, yeah, tell me about the meetings. What do you, what do you do in the meetings?
Natalie [6:44]: Um, well, we kind of alternate between just having like a fun, like, hangout kind of space. Like, we had this one meeting where we just did Pictionary, basically, with each other on time, just, you know, without worrying about being triggered or being judged for saying something like, hey, can you stop doing X? And our few loyal members seem to like that. But we've also had meetings where I designed a dialogue chart for the best ways to... explain your misophonia to others in certain situations and so i like put up the thing that i had written and then we'd discuss it and say like oh maybe that sentence is a bit confrontational let's change it to this and then i sent out that edited version to the people in the club so that they could reference it if they wanted to explain because it can be really hard to do that
Adeel [7:43]: Yeah, that's really smart. You know, obviously people talk about coping mechanisms, but dialogue kind of prompts or dialogue kind of advice is, you know, maybe even more valuable because you're always going to find yourself in that situation when you want to talk to somebody about it.
Natalie [8:02]: Yeah, and it's like the worst possible case because you're in pain, you're feeling all these emotions, and you need to be really, really polite and really, really clear with what you're saying. And it's so hard to do both at once.
Adeel [8:16]: Right, yeah. That's really interesting. And so have you, has it helped? Do you have any kind of anecdotes of that kind of working at UCLA?
Natalie [8:29]: Um, for the most part at UCLA compared to like my high school, people are a lot more accepting of it. I mean, I usually... I always try to put the emphasis on myself so that they don't think I'm attacking them. I say, hey, can you do me a favor? Can you do this? And if they ask me why, then I'll give a short explanation. I have this thing, and because you're doing this, it's making it really hard for me to focus. I try and keep it as not detailed as I can so I don't scare them away.
Adeel [9:06]: Yeah, just kind of incrementally add your information as needed.
Natalie [9:11]: Sometimes they're just like, okay, and then I don't have to explain. But if I come at them with like, I have misophonia, they might think, what is that? I feel stupid because I don't know what that is. So I try to... you know, I'm constantly thinking of how must this feel to the other person? And my mom has been really helpful with that. Like she's helped me figure out what to say so that people get the least angry.
Adeel [9:36]: Yeah, great. Okay. And yeah, why don't we take it back to home? Is kind of home where things, this kind of started for you, like for most people?
Natalie [9:47]: Yeah. I remember first being triggered when I was like eight or nine. and um mostly by my dad but by my whole family really and um I would cover my ears and tell people to chew with their mouth closed because I thought that that was what the problem was, but it was not. But other people complained about people chewing with their mouth open. So I was like, okay, that must be what this is. And for a long time, I really thought that everyone felt this way and I just couldn't cope. As I got older, like, into high school and people really weren't reacting the same way I was, I was realizing that, like, maybe this isn't normal, but then, like, what is it? And I've talked with a lot of, like, people my age, and I feel like we all went through the I guess I'm just crazy phase, and I definitely had that.
Adeel [10:51]: Yeah, so when you said you thought everyone was dealing with it, you thought maybe you were just, it was just kind of an annoyance like everybody else is and something was wrong with you in terms of you couldn't cope with it?
Natalie [11:02]: Yeah, like just, oh, clearly everyone feels this much pain all the time. I just can't hack it. Like I just can't move past it. Yeah.
Adeel [11:14]: Yeah. So, uh, okay. And so, yeah, so around eight or nine, you're, um, yeah, I mean, as you know, classic story, um, your, your parents are kind of triggering you. Did you, what did, what did they think? Like for, until, basically until you realized, until you read about misophonia, is that what you thought that it was just kind of like your inability to, to, to handle this, um, thing that everybody, everyone deals with?
Natalie [11:41]: Yeah, because I couldn't think of anything else. I mean, my parents and my brother were, you know, they would say things like, you're just being sensitive, stop being so rude, like you can't do that.
Adeel [11:58]: Okay, so they reacted to your reactions in that way, kind of like trying to brush it off.
Natalie [12:04]: Oh yeah, yeah, definitely like... knock it off, stop, stuff like that.
Adeel [12:09]: Are they still like that? I mean, it sounds like your mom is much more supportive now.
Natalie [12:13]: No, thank goodness. They have improved a lot since then. It did take a long time. Like, I found out about misophonia from a therapist I was seeing for my anxiety, and I was so excited. I was like, oh, my gosh. I'm not crazy, and I couldn't wait to tell everyone in my family, and I did, and it had, like, no effect. Yeah. okay like just stop though and I was like I can't um but they're better now obviously um my mom is probably the most supportive like it used to be that if I got triggered and I would say something like please stop then they would be some annoyance but then they would comply and now they don't seem to get annoyed anymore which is cool. But it's still hard for them sometimes.
Adeel [13:07]: What do you think helped them improve? Was it just time or was it more studies coming out or did you find better ways to communicate with your family about it?
Natalie [13:20]: For my brother, I think it was just he like matured because he was like, you know, 16 and everyone's stupid when they're 16.
Adeel [13:28]: Especially us boys, yeah.
Natalie [13:31]: And so he went to college and he got a lot more like emotionally aware of people around him. And so he just kind of, he's like told me this in the past year, like I realized that this thing, even though I didn't understand it, you pain so i will try and help because you're my sister and i was like awesome so that was just he also discovered girls probably and he needed to grow up a little bit um yeah my mom actually like had a breakdown in front of my mom about it and she said that that really helped her believe because i got so upset and i why would i get so upset about something that wasn't real but i also found this misophonia expert guy who lives in livermore his name is tom dozier dozier yep Yeah, and I went to him, and my mom came with me for several of the visits, and she said that he was, like, testing my reaction to something, so he, like, slurped some water and made, like, a really loud noise, and my whole body, like, jolted, and my mom saw it, and she's told me that seeing my physical reaction like that, even though my eyes were closed and stuff, really showed her that, like, this was real and I wasn't making it up or...
Adeel [14:46]: exaggerating how much pain i was in interesting okay um and how um you so you had this kind of breakdown that led to you going to see tom dozier and how did um and was that um you know years after you had told him about misophonia or was it kind of around that time i think it was a couple months after i figured out what it was i think um
Natalie [15:16]: I think it might have been that therapist who told me about Tom in the first place.
Adeel [15:21]: So did that original therapist know about misophonia before or were you describing symptoms and they did some research?
Natalie [15:29]: I was telling her about how I reacted to people eating in class and she said, that sounds like misophonia. And I was like, what's that? And then she like searched it and like read the... Yeah. And I was like, wow, I have all of those.
Adeel [15:44]: Yeah, yeah, yeah. No, that's cool that she already knew. That's not, that's not, still not common.
Natalie [15:52]: Yeah, didn't know how to deal with it, but she knew what it was.
Adeel [15:55]: Gotcha. Okay. But since then, so it was, she just basically gave you a kind of a referral to Tom to kind of like continue with those, with that issue? Or did she, was she able to help you in any other way?
Natalie [16:07]: Oh, she referred me to Tom. She did try to do something that she thought would help, and it absolutely did not.
Adeel [16:14]: What was that? Just so people are warned when their therapist approaches them with this.
Natalie [16:20]: She wanted me to carry on a conversation with her in the silent therapy room while she ate almonds, and I think I lasted three minutes before I broke down.
Adeel [16:33]: Okay. Well, I'm sure she wasn't convinced that it was misophonia. That's interesting. Was she trying to do some kind of ASMR or was it literally just her own idea?
Natalie [16:46]: Exposure therapy.
Adeel [16:47]: Exposure therapy. Yeah. Yeah. Okay.
Natalie [16:50]: That's not how it works for misophonia.
Adeel [16:53]: No, but at least she's trying. Yeah. I mean, I guess on a positive note, at least she's trying something, but you're right. Yeah. And so, yeah, so going to Tom, obviously, yeah, it was pretty, I'm sure it was very obvious very quickly what it was. Did you, it sounds like you went a few times. What kind of stuff, what kind of stuff did you get out of that?
Natalie [17:16]: um well he recommended um headphones for me to buy and they're like well the first ones were these Bose headphones that were had like a wire and there was like a button you could push so that it was only like half noise cancelling and you could like still hear conversations and that was a lifesaver for me and i was able to like you know eat meals with my family again and that was incredible so i thank him for that and i still use both headphones now i have a newer one because that one broke but uh i think they're incredible and just so i couldn't do so many things if i didn't have them um He also gave me some breathing exercises that he wanted me to do, showed me a good white noise app to download to my phone, and just kind of gave me a lot of validation that what I was feeling was real. I think that was the other major thing that he did for me.
Adeel [18:21]: Yeah, that's cool. In terms of validation, obviously, like probably starting this group and meeting other people with misophonia must also be validating. I know a lot of people talk about meeting other people and getting validation that way. Before you started at UCLA, did you know, had you met anybody else who has misophonia?
Natalie [18:47]: I met two people.
Adeel [18:49]: How did you meet them?
Natalie [18:51]: One of them, I was in a show with her and she started to eat a cough drop and we had a scene together and I said, can you please not do that? Like, I won't be able to talk with you. And she said, do you have misophonia? And I was like, yes. And then, and cause she had it too, but she had different triggers than me, but that was, that was a wonderful connection right there. And then another person in a band thing I did, like I was part of a choir for like a quarter. I mentioned having Misophonia and this one other person, I don't even remember his name, said that he had it too. I haven't reconnected with any of those people. I tried to tell the girl that I was in a show with about the club, but she's a busy theater major, so I don't know if she has time.
Adeel [19:39]: So these were both at UCLA?
Natalie [19:41]: Yes.
Adeel [19:42]: Gotcha. Okay. Interesting. Um, and, um, okay. So you, and so the tumblers are, you, you talked to him before, before you started college or, um, Yes. okay okay um cool and yeah and so so she got you the the headphones i'm curious um so headphones breathing techniques um yeah what are some of your um obviously headphones seems to be one of your favorites are there any other coping mechanisms that you've met that you've discovered through therapists or kind of on your own um i mean it doesn't sound very brave when i say it like this but
Natalie [20:24]: Protecting yourself, I think is by far the most important thing that you can do. My family, like our value system is very much like tough it out. Like that's what we're encouraged to do when faced with something hard. Like I like to tell the story that my mom got a concussion in the morning and then she taught physics later that afternoon. which she regrets now, but like, that's just the kind of work that my family has. And. So I thought that I had to tough it out with my misophonia as well, that I just had to let myself be exposed so I could calm down. And that does not work. And when I started just removing myself if I was in pain and asking people to stop if I couldn't listen to them and trying to be less ashamed of doing that, I really... like my misophonia got less severe when I started doing that. Like, I really think that protecting yourself is the first step to recovery. It's not selfish or saying like, I never want to get better if there even is a getting better. But I really think that it's more important than people might realize to like put yourself first.
Adeel [21:46]: Right, so protecting yourself could mean putting on headphones, also maybe slipping out of the situation. Are these the kinds of things you're talking about?
Natalie [21:56]: Yeah, yeah. Or just straight up walking away from someone because they're hurting you and you can't handle that right now.
Adeel [22:07]: Yeah, so let's talk about that. So you've got, you know, you've been discussing dialogue techniques. That seems like a fancy term, but what are some examples of, yeah, basically, what are some tips you have about approaching people? I know we talked a little bit earlier about it, but it's kind of incrementally talking about misophonia. Do you have any, like, maybe some real-world examples of situations you've been in?
Natalie [22:38]: well my biggest piece of advice would probably be like phrase it as them doing you a favor because that's People are more likely to do you a favor, like, because then they feel good. Like, oh, I did something nice for this other person. So you can say, hey, can you do me like a huge favor? Can you spit out your gum? Can you please stop eating until later? It's more likely that they'll do that because then they'll think that they're like doing something good. Definitely try not to point out like how much pain you're in if you can, because then they like Because they aren't trying to hurt us, and we know that, but obviously it's still happening. Things that have worked for me in clubs that I'm a part of, I'll often talk to the leader and ask that there be a rule that no one can eat. during the club but they can eat after and that has worked well more times than not and just when well like the first meeting of the quarter happens they talk about you know ground rules and stuff and they say things like and no eating during meeting and um I could like text someone and say hey like someone's eating over there can you like go and Remind them so it doesn't have to be me going up. It can be someone with more authority and that works really well. In clubs where they like bring food, I also say like, hey, can we have that at the end of meetings so that I'm not impaired while we're discussing? And sometimes that goes badly, but usually just with people who are mean. Yeah.
Adeel [24:31]: And what about overall UCLA in terms of accommodations? I guess there's something called a 504 plan. Have you been able to get any accommodations from your professors or staff at UCLA?
Natalie [24:47]: I have, actually. With Tom's help, I registered at the Center for Accessible Education, and I have it, like, that's what allowed me to get only one roommate for my first two years there, because you're supposed to have two as a freshman, and I could not handle two. And I found out that I couldn't even handle one, but, but like, I went back to them after my second year and said, can I please get a single apartment? And they said, yes. And I got one and I've been sleeping a lot better because of that. Um, and it says like on my form that I get, um, preferential seating. Cause I like to sit near the front so that I don't have to look at anyone eating from behind for me. And with my headphones, I can't hear what's behind me. So it's fine. Um, And I'm allowed to wear my headphones during class. I can't wear them during a test, obviously, but I'm allowed to wear those foam earplugs. And because like some teachers have rules like, you know, no cell phones. And some people will like say, get those headphones out. And I have to say, like, I can't. I'm still listening. But I still often have to go up to them myself and say, like, hey, this is why I'm wearing headphones. I can still hear you. I can give you like the information for the CAE if you don't believe me. But they usually just believe me.
Adeel [26:15]: And that center is a UCLA organization or is that something else? Yes. Gotcha. And so, yeah, the whole issue of sitting in class comes up a lot and there's like mixed opinions on whether sitting in the back or sitting in the front is better. Sounds like you opted for sitting at the front, which is what I would do, I think, sitting at the front with your headphones on so that you don't have to see anybody because it sounds like you have the visual triggers too, right?
Natalie [26:45]: Oh yeah. I have. Yeah.
Adeel [26:48]: And it don't start around the same time or just kind of build up later.
Natalie [26:52]: They built up later. I didn't, I didn't used to be triggered by like, like people like, you know, people who sit and then they cross their legs and they like kick their leg.
Adeel [27:02]: Yeah.
Natalie [27:04]: Idiots. And now it drives me absolutely insane. Um, And like the jaw movement that people make when they're eating, that also triggers me. So like if I'm sitting behind someone and they're eating, even if I can't hear them, it's still hard. So I sit at the front, like in the center to try to not see anyone and just focus on what the professor is saying.
Adeel [27:30]: Gotcha. Yep. Yeah, it makes total sense. And so that can work obviously in class. Do you have any tips on kind of avoiding, well, I guess other than turning around, avoiding that in other situations? Like at home, I'm sure you're sitting around a table and you got your headphones that can help you. Do you try to get them to cut down on visual triggers too?
Natalie [27:59]: try my best to just kind of angle my own body so i don't see their visual triggers my close friends and my family i think they're okay with me saying like hey can you please like put your foot on the ground because they know why i'm asking and i wouldn't be asking for no reason um but if i'm with like a random person and they're doing a
Adeel [28:23]: movement that's hurting me i just try and like subtly cover my eyes or like turn my shoulders in such a way so i can't see it as well gotcha okay cool um yeah that's uh there aren't yeah it's it's like strange it's like it's so hard to just kind of get over audio triggers and then you gotta like with visual triggers too once you've kind of maybe put a damper on those with with headphones um
Natalie [28:52]: Hoods are good, too. Like, I have this hood that, like, I call it my horse blinder hood because it, like, goes so far out past my face so I have no peripheral vision.
Adeel [29:02]: Yes, right.
Natalie [29:03]: It's not, like, in movie theaters, mostly.
Adeel [29:07]: right um yeah and um and so uh well speaking of uh so you're home now obviously because of uh the covid situation has has the uh has this kind of has lockdowns affected your miso at all like uh yeah noticeably better or worse i would say it's slightly worse there's more sounds that i'm noticing that are hard for me to ignore like sometimes
Natalie [29:36]: Like the birds bother me and I feel really silly when birds singing bother me, but it's so repetitive.
Adeel [29:44]: Yeah, right. They don't have much of a brain and that's all it's programmed to do is make the same sounds. So is repetition one of your triggers? We don't have to go into too much of a description to trigger them. I'm just curious if it's the regular kind of mouth sounds or if there's a repetitive nature that particularly bothers them for you.
Natalie [30:06]: I mean, mouth sounds are probably the worst, but any... repetitive sound will get on my nerves eventually if I don't stop paying attention, like put in my headphones or like go somewhere else. Like I used to be fine with clocks and now I am not. But if it's like a consistent sound, like if there's no like sound, silence, sound, silence, then I'm fine. It's just the repeated noises, I guess, that are a problem.
Adeel [30:38]: starting and then silence and then starting and then silence kind of thing yeah and uh have you noticed any kind of uh uh the people you've met at school like any um unusual kind of trigger or maybe actually more interesting would be kind of unusual coping mechanisms that other people have have used that may or may not work with you i know that a lot of people use the um
Natalie [31:03]: mimicking idea where like you hear a sound that hurts you and so you make that sound as as well yeah yeah that's very common i've never really done that i do it sometimes but just kind of out of spite i don't really think it helps yeah i think i'm there with you um the girl i mentioned i was in a show with one of her triggers was um feet scuffing on carpet which i've never heard before and that must be so hard to deal with
Adeel [31:39]: Yeah, because people have to move. So that's, yeah, you can't just stop people. Unfortunately, you can't stop people from moving. Yeah, that's interesting. Very different from like crunching and whatnot. But I guess it does have a weird frequency nature to it.
Natalie [31:56]: Yeah. It's just, it can be so many things. It's not just eating.
Adeel [32:01]: So, you know, we'll probably start to wrap it up, but I really want to get kind of your insight. I'm sure there's a lot of students, you know, they've probably just finished up a, you know, quite maybe a painful year at school this year, are now at home and kind of dreading starting again in September. Do you have any advice as someone who's started a group for students to kind of like advocate for themselves at their institution?
Natalie [32:34]: I would say that you should go. I'm sure that all schools have something like the Center for Accessible Education because I think that's a law with the ADA and stuff. There's clearly examples of people doing it before, like there's me. I think just the most important thing is to be assertive about what you need because it can be really hard to speak up for yourself and say, like, I can't concentrate if you do this because there's a lot of people who don't understand. And I've had a lot of people say things to me like, how will anyone be your friend if you're like this? Which is very mean, but people do say that. But not doing anything is worse because if you don't tell your family and your friends that you need their help, you will start to resent them because they are hurting you and because you can't get away from it. So that moment of being uncomfortable when you explain to your friends or your teacher or your... roommate is so worth it because it will save you so much pain down the line and probably the best idea i could give is just to find at least one friend who understands and supports you like the two people who started the club with me are the sweetest people i know they are so kind and accepting about it and if i found two people at my first year i'm sure you can find someone as well and if you have that person on your side it's a lot easier to ask for help because sometimes they'll go up with you and sometimes they'll even do it for you so finding allies in any way that you can and not being afraid to speak up for yourself.
Adeel [34:40]: Yeah, that's great. How, how did you find your, your first two, um, partners that you, I thought maybe you started the group yourself and then people came to you.
Natalie [34:48]: Um, well, I met Cammy and Isabel at like other clubs I was a part of. Um, Cammy was in a writing club I joined and I just thought that they were really cool. And so we started hanging out. Isabel was in a different club and eventually, um, like the three of us started hanging out together. And because like the main way you socialize, especially as a first year is like going to the dining hall together, I would have to explain like, hey, please wait to eat until I put in my headphones. And then they would ask me why and I would explain. And they were so accepting of it. And from like that point forward, if I ever said like, hey, can you stop doing this? It's... triggering me. There was no animosity from them. They were just like, okay. And they knew it was so important to me and they let me talk about it and just be upset. And there was no, they never took anything I did personally. And when I told them I wanted to start this club and I needed two people, they were all excited to do it with me because they knew how important it was to me.
Adeel [36:02]: That's amazing. So they're straight-up allies. They don't have misophonia, but they wanted to help you start this. Wow, hold on to those friends. That's great. And then stepping back maybe actually a couple years, I know there's a lot of high schoolers. I've interviewed a bunch of high schoolers. What are some things that you would tell your high school maybe to help high schools who have misophonia right now succeed?
Natalie [36:33]: again, reaching out to the people who have like the 504 plan, the IEP, there is like, you can get help from that. Like I did that. I had a 504 because I have a stutter, but I just went to them and said like, Hey, I also have this. I need to be able to use my headphones during class. And, um, it was, it worked. And, um, That's probably the most important thing. I didn't have as much success talking with teachers in high school. And I think it's because like it's a different environment. But sometimes I would go up to them and say like, hey, please stop chewing gum while you teach. And sometimes they would listen. But it was harder in high school because I had less power than I think I do in college.
Adeel [37:28]: Did you ever go to try to go to like a counselor or I don't know who, I've been trying to think about how to, uh, approach, you know, school districts or principals or whatever, or counselors about it. Uh, I was just curious if, if you would, uh, talk to anyone other than teachers and friends about it or what, or if you, I don't know, have any, uh, theories that might, that other people can try.
Natalie [37:53]: Um, we had counselors at my high school, but I didn't really talk with him about this. I mostly just spoke with the woman who handled the 504 plans and she asked for like, you know, documentation, which I got from Tom and just like, if what, what you're asking for isn't really that big of a deal. Like it's not that hard for them to give those. accommodations to you. And I think that that also helps. And being very clear about what you want is very important. Like you should go in to asking whoever's in charge of those kinds of plans, like this is what I need to succeed and this is why. Because then they don't have to like suggest anything. There's no kind of gray area. So definitely knowing what you need beforehand.
Adeel [38:49]: That's a great tip. Yeah. Yeah. Ask for what you want as opposed to just kind of going in there and saying, sounds bother me. And then that'll just kind of probably annoy them. Interesting. Okay, cool. Yeah, this has been great. This is going to be super valuable for kids and anyone. Yeah, anything else that you've kind of been thinking about or have kind of picked up that you'd like to share with people?
Natalie [39:18]: I just, I always want to tell everyone out there with Misophonia that you're not alone and that we've all been where you are and that You can have friends with it and don't listen to those awful people who say that you can't. And it's really hard to ignore them because I feel like I had a lot of experiences when I was a kid of people making fun of me, saying I was being annoying because of it. And it's hard to let go of that. But my family now and the friends that I mentioned clearly have no problem with me having this issue. And there are people out there that... will be the same. And if they aren't, then you shouldn't be friends with them anyway.
Adeel [40:06]: Yeah, that's great. Yeah, you will have friends. There are more and more of us as we're hearing these stories on this show and beyond. That's great. And I'll put links to the UCLA group in the, I'm assuming there's, I know there's an Instagram, I'm assuming there's like a Facebook page and other ways to kind of get in touch.
Natalie [40:28]: Yeah, yeah. I'm pretty sure you can get to the Facebook from the Instagram account. I'm pretty sure I linked that correctly.
Adeel [40:35]: Yeah, yeah. Either way, I'll kind of link to both of them in the show notes and post it in the caption when this goes live. But yeah, not only I wanna thank you for coming on, but also for just being kind of a model advocate for Misophonia in the world and also at your school, especially a big school like UCLA. I hope that this kind of, that kind of thing spreads across the country and the world. So we have more people talking about it, more people finding others and supporting each other.
Natalie [41:05]: I'm trying my best.
Adeel [41:09]: You're doing great. Yeah. Thanks. Thanks again, Natalie. And good luck with everything.
Natalie [41:15]: Thank you.
Adeel [41:17]: Thanks again, Natalie. Hey, so you're probably off this summer, but now's a great time if you're a student to start thinking about starting your own group at school this fall. Please let me know if you do and I'll promote it. You can email hello at misophoniapodcast.com or find me on Instagram and Facebook at Misophonia Podcast or Twitter at Misophonia Show. Don't forget to check out The Miso List at misolist.com. Music, as always, is by Moby. And until next week, wishing you peace and quiet.