Victoria L. - Exploring Academic Life with Misophonia
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 18. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Victoria, a textile historian and lecturer currently based in Edinburgh. We talk about her childhood experiences being triggered at an early age, with things like clocks ticking and water sands. We talk about the challenges of being a lecturer, and how she copes with Misophonia in the classroom settings. She actually asks me a lot of questions about my background and experiences too, so you kind of get a two-for-one deal here. It was great to dive into my background a bit and talk about what we have in common between our reactions and coping methods. After the show, let me know what you think. You can reach me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please do head over and leave a quick review or rating wherever you listen to this show, whether it's Apple Podcasts, Spotify, whatever. It really helps drive us up in the algorithms and reach more listeners. Of course, a couple of my usual announcements. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing to the show, you can read all about the various levels at patreon.com slash misophonia podcast. Also, reminder that the book Sounds Like Misophonia, a self-help guide, just came out through Bloomsbury. And it's by Dr. Jane Gregory and I. And you can find it anywhere around the world, any bookstores, order it or pick it up at your local bookstore. This episode is also sponsored by the personal journaling app, Basel, B-A-S-E-L. Basel was developed by me and provides AI-powered insights into your journal entries and guides you with new writing prompts based on those insights. You can even explore many different therapy approaches or modalities and philosophies. It's all available on iOS or Android. Check the show notes or go to hellobazel.com. Just a heads up, there was some audio issues, I think, with the microphone that Victoria was using. So you might hear some clicking and some volume changes that might make it hard to listen to some parts. But hopefully, overall, it works for you. And apologies in advance. All right, now here's my conversation with Victoria. Victoria, welcome to the podcast. Great to have you.
Victoria [2:28]: Thank you very much. Pleasure. Thank you for having me here.
Adeel [2:32]: Oh, no, no, of course. Yeah, you want to tell folks kind of roughly where you are?
Victoria [2:37]: Indeed. So my name is Victoria. I'm originally from Spain, but I live in the UK. I'm a lecturer and I am misophonic. And I'm here to talk about... Yeah, my experiences. My trauma. No, no, no. Just my misophonic trauma. Just kidding.
Adeel [3:00]: yeah so you actually yeah what what do we um yeah when we start with maybe your what you're what you're doing so you're you're a lecturer um do you want to talk a little bit about you know where where you're teaching and i'm particularly curious i guess uh you know classrooms are uh or lecture halls are not the best place for well no no and that's i think not so much lectures because students should indeed um
Victoria [3:27]: the classroom but when you go to the canteen or then you see side by side by a certain student that is eating a soup and is sorbing and or gulping very um noisy that can be a bit challenging so what i do i'm a textile historian and i study the textile i study text yeah text textile trade um in the 18th and 19th centuries and i teach at the university arts london and i'm a researcher as well at the university of edinburgh
Adeel [4:04]: that's what i did yeah okay yeah all over the place um um so yeah so i guess um do you want to talk about yeah maybe i had i had about your uh your podcast um the bbc
Victoria [4:22]: interview that was i think it was a program based on misophonia and that was super interesting and fascinating and that's how i yeah i encountered this podcast
Adeel [4:36]: Cool, yeah, no, I'm always curious how people find out about it, and you're right, there was a, we recorded that, oh man, it was like, it was actually months ago, in like May or June, or maybe even earlier, and then, yeah, it was around May or June, and then, I think it was some food show, and they were doing a feature on the food supply chain, I think that's what it was, and yeah, Dr. Jane Gregory and I were on with another Another young idiot. Yeah, I was really happy with how it turned out. And I'm glad you found it.
Victoria [5:11]: Yeah, there was something really curious that it happens to me too. And I think it was one of the participants, she was discussing that she's got a cat. And of course, when the cat chews, that's fine. That's not a problem. But of course, when anybody else does it too, then it becomes terrible. And that's what happens to me too, because my cat, he's sick. And when he eats, I'm so happy. And I love to see him eating. And actually, I love to hear him hearing him eating and chewing and my partner he's always like oh but how come like he just does the same noise but it's different because if he eats that means that he's healthy i don't know yeah yeah it's all about context and if it's related to kind of the the fear triggers in the brain i mean uh it's it's not it's not it's not a miss funny is not a response to the frequencies that are involved it's it's more than that Indeed, indeed. And I heard it was also related to some way or another to childhood or childhood traumas, but I'm not sure if that's true. And why is that?
Adeel [6:30]: Yeah, I mean, that's something I hadn't put together until I started doing this podcast. And then every episode, I don't mean every episode, but a heck of a lot of episodes where there was some kind of a chronic childhood experience, a negative childhood experience, whether that was, you know, stuff in the home or abuse or death in the family or just walking on eggshells. Yeah, or I've had two people come on whose mothers were diagnosed with severe schizophrenia when they were young children and had to be taken away. Yeah, that comes up a lot as a common theme. Or angry parent, alcoholic parent. Good. So, yeah, I mean, you know, the brain at that age, I think, here I am speculating on my soapbox, but, like, at that age, you don't know how the child's going to react. The child doesn't really know. They're completely separated from the parent. And so I think there needs to be a lot more research into, like, how can we... predict or treat these um these deep reactions in the child's brain differently uh you know for different kinds of experiences so some people won't have misophonic reaction but i feel like in many cases it comes up in other ways on the mental health of the child as they're growing up so
Victoria [8:00]: And I wonder if it's also cultural. Because, of course, through cultures where chewing with your mouth up is not so much of a thing. And, like, what's the... What's the rage of misophonics in those cultures? Is it the same? Is it smaller? That would be also an interesting study to conduct.
Adeel [8:26]: Well, I think if misophonia turns out to be something where your body is... not maybe is well is not defective but is actually somehow the child's brain is has um learned misophonia as a way to warn you of some phantom danger if in certain cultures it's embedded in you from a young age that you know eating with your mouth open is not indicative of danger maybe that's why it wouldn't be as prevalent in another culture totally needs research
Victoria [8:58]: I'm just talking.
Adeel [9:01]: Fascinating. Do you expose yourself to those noises to get used to, or do you just... No, yeah, you know... Accept yourself and your... Exposure therapy is... Yeah, I wouldn't... I don't know if anybody recommends, I'm sure somebody does, but it's generally not recommended to just kind of jump into trying to get used to noises. um you know that's that's kind of exposure therapy and that's um yeah usually will make things worse yeah i agree so how about i mean how about you like how was your childhood do you remember when this started for you
Victoria [9:37]: So I think it started as, I mean, from my own memories, I think five years old, perhaps earlier. And it was not only when my mom chewed, but also when perhaps there was most and foremost the tick-tock of the clocks around the house, especially when I went to bed, I couldn't hear one. If I heard one, I just had to... remove the the batteries or hide it somewhere like very very far away that i couldn't hear it because yeah or um the noise of the water um the toilet that was also something that um the dropping like hearing like dropping a that was, if I was in bed and also the toilet was closed, was in front of my bedroom, if I had any droppings, it just went crazy. I just went mad. And I had to even, when I had the bath, and I had to leave the bathroom before the bathtub, you know, the drain, the bathtub, the drain had started working because that was, for whatever reason, my mom has told me, I don't remember that, but she said I got like an anxiety attack.
Adeel [11:04]: Yeah, yeah. Hearing the drain.
Victoria [11:06]: It was also, yeah, hearing the drain, hearing water move, apparently as well with ambulances, but that's fair enough. I suppose any, any child can have that reaction, but I just, I heed and started screaming because, well, yeah, I feared the ambulances but again that's that might not be related to the misophonia that might just be that ambulances are very very noisy of course it would scare any child
Adeel [11:40]: sure sure yeah that's this is fascinating yeah a lot of people are um you know water like gulping and silence i mean that's definitely one of my triggers um uh that's funny it's the first time i've uh yeah yeah yeah for me um and you know it's it's not the only one i mean uh just sometimes just hearing water pouring into a glass people have said that's a trigger oh oh
Victoria [12:01]: any like any water you know draining any any form of draining yes or water movement for whatever reason yes uh the tick tocks my of course any gulping chewing and i think recently and that's something that has when i don't know how to say in english when people when when they talk and they do you know that that noise because i didn't That's been recent. And a couple of times I've heard myself doing it and it was like, oh no, oh my God, stop it.
Adeel [12:36]: Is that that, I'm probably going to bleep that out, but so I don't describe it. Is that kind of like that, you know, that ticking sound when people begin a sentence? Exactly. Oh yeah, that's definitely one of mine.
Victoria [12:51]: But it has happened, you know, I've heard myself doing it. It was like, ah.
Adeel [12:56]: I mean, I wasn't triggered when you just did it because again, context, like I'm talking to you, you're a missed phone, we get each other. So it doesn't trigger me, but I totally know what you're talking about.
Victoria [13:08]: But especially as well as when I'm giving an lecture in a seminar to my students, I have to be very careful because if I do it, then I can't stop focusing on that. And then I just disconnect from what I have to say, you know, and instead focus on the noises that I'm making or the noises that I might be perceiving whilst I'm delivering the lecture. Because, oh, this is the other thing. The pens. You know, when you're... Oh, yeah. I've sometimes been in an exam with, you know, other students like, can you please just stop it? And they look at me as like, oh, you're, you know, what kind of Nazi you are. This is like, no, please just stop it. Because I cannot finish my exam if you still, if you keep on doing that.
Adeel [13:58]: Let's stay in that classroom for a second. I'm just curious. Have you been in situations where... I'm fascinated by that moment where you heard your own clicking and your mind gets distracted. Do you remember any situations where that's happening? And how do you get back to the lecture?
Victoria [14:20]: It happens a lot. It happens a lot? Not a lot, but it can happen. And I suppose it's just anything. When you're lecturing, you're very much acting. So at some point, you have to think, oh, stop being yourself and go back to the lecturer persona. Yeah, just try to disconnect from yourself, basically. And there have been days when I'm really, like I've had a bad morning and I've received some bad news and I'm exhausted and sad and mad. And then you just go into the classroom, you put this mask on and then you leave and actually you feel good. It's strange. It gives you a strange high. Yeah.
Adeel [15:19]: so is it almost sometimes if you get a if you get through a lecture you know that triggers you just feel like it's I don't know it has to like a shot indeed yeah it is a coping mechanism and it shuts everything else in the brain you just shut it down and you have to focus on what you focus and what you have to focus on of course when
Victoria [15:47]: on you have to hide as well or your insecurities because you have to be confident organized even if you're not even if you're you know feeling terribly weak or terribly i i've had um an ex-lecturer of mine who's now a friend and i loved her i mean i loved her the way she she lectured and and she said well every time i finished a class i've happened until now and she was about 50 years old She said, I want to cry. I always want to cry because I feel incredibly nervous and that doesn't go away. And that's probably true because we're not, we don't get, we're not there for the, we haven't been prepared to leave the lectures. We have been prepared to do the research, to gather data. acquire knowledge but not necessarily on presenting yourself in front of sometimes hundreds of people and that you just have to get on with it
Adeel [16:58]: Right, right. No, that's, yeah, that's fascinating. And I'm sure if you then get triggered, though, that can totally ruin that equilibrium.
Victoria [17:07]: Indeed, indeed, absolutely. Yeah, no, that hasn't been much of a problem. I think it's more when I'm, yeah, in the continuum. perhaps if I'm sad to like close to students and you know you know you cannot just tell them like eat with your mouth shut or you have to I have to leave in my case because then yeah you can you know you again you don't want to appear as who you are you just want to retain those um that that mask or that persona
Adeel [17:45]: Has that always worked? Has there ever been a situation where you had to tell a student about misophonia or just have to tell them, I can't do this right now. Maybe the system is back.
Victoria [18:05]: Thankfully, not yet. It may happen, but there have been times That has happened a couple of times, yes, that I've had a student that was opening a chocolate bar or a candy, and the noise that has really bothered me... Oh, sorry, the dog. That isn't usually a noise that really bothers me, but for some reason, yes, when I'm in the classroom, it does. Perhaps just because you can hear it very, very well. and i it yeah but i cannot understand or even if a student eats in the classroom but that i i say it up front like eating is not allowed or try unless it is a very very big lecture room when i like in which case i know that i'm not going to hear it that's fine but if i know that i'm going to hear it it is a small seminar of 10 to 15 students then eating is not allowed
Adeel [19:12]: Right. No, that's great. I've heard of other teachers, lecturers mention at the beginning, like, be explicit about the fact that don't eat in my class.
Victoria [19:22]: Yeah, but I think, you know what, I think that's very cultural in the sense that in the US, a lot of people, like, it's okay. to eat in the classroom or during a seminar or whatever. But it's not so much the case in the UK or in Europe. I don't know why. But yeah, it is, again, a cultural difference.
Adeel [19:50]: So going back to, um, yeah, I mean, going back to childhood, uh, yeah, you know, at night, um, especially it sounded like, um, you're very sensitive to, yeah, clocks ticking, water. Was, um... you know around that evening time were did you feel like you were kind of like i don't know exhausted mentally for for uh for any reason often yes indeed and i had a whole ritual before going to bed which sometimes i thought that i was ocd but it was like
Victoria [20:23]: that retool was only noise related. So, and it was, yeah, removing all the clocks that I had in my bedroom, making sure... Oh, you mean ritual?
Adeel [20:32]: Sorry.
Victoria [20:33]: Yeah, retool, sorry. Okay. Sorry.
Adeel [20:36]: It sounded like retool, but... Oh, no, retool, sorry. Yeah, just wanted to make sure the listener is new because it's a very fascinating part of, yeah, sounds like a new experience.
Victoria [20:47]: yeah no ritual of hiding all the clocks and making sure the tab was uh properly closed and yeah sorry there's a bit of noise in the background um
Adeel [21:03]: Yeah, sorry. Was the ritual... Yeah, so I totally get that. Yeah, to make things quiet. I'm also curious if just kind of like your mental state in the evenings, was it ever just... Was it just kind of tense in your house at all? Or was it just totally fine, happy childhood?
Victoria [21:23]: No, it was tense. It was tense, I think. I mean, not that it was a tense environment. I was tense because of the noises.
Adeel [21:31]: Gotcha, gotcha.
Victoria [21:33]: Yeah. No, I don't... I mean, I didn't... I didn't have any tension in my family. That's the question. That was... That was fine. Yeah, no, no, no, no. I think it was just, if anything, my mom is a single mom and she worked until usually until quite late in the evening. And I was always very expectant to see her. So maybe there was that, you know, there was sometimes childhood disappointments because she was, I mean, she's now retired and she was a journalist. but then she couldn't work from home so if she had to finish writing something she had to finish from the newspaper's offices or if she had to attend a press conference or whatever so there was that expectancy Margaret Thatcher's yapping about something that she had to be right on top of exactly but there wasn't any other tension that I can recall
Adeel [22:37]: Do you have brothers and sisters too?
Victoria [22:40]: I have two half-sisters. So they are daughters of my father, not my mother. But I grew up with my mom and my grandparents.
Adeel [22:56]: Exclusively, you weren't going back and forth or anything?
Victoria [22:59]: No, that's something that luckily I think my mom saved me from because that could have been... very traumatic because at the moment since I live in almost two, three countries in the sense that I work in the UK but I'm originally from Spain and then my partner is in Italy so I'm here and everywhere all over the place and I cannot imagine if that You know, if I had to travel, even if it was just nationally, between two houses, that would have been awful. So, luckily I didn't have to deal with that.
Adeel [23:42]: Okay, yeah, so he wasn't, like, down the street and you can just split time. It would have been quite a mess.
Victoria [23:48]: No, no, no. Yeah, it would have been. And it is true that I don't have the best relationship with my father. So, again, I'm lucky, I think, that she didn't expose me to that.
Adeel [24:09]: Got you. I mean, was he... you know, not a nice man kind of thing?
Victoria [24:16]: Indeed. Yeah, I think, I mean, he's an engineer in the military and very, very, very strict. Zero. I think he could be, he's emotionally disabled. So he doesn't have empathy. And as a child, you don't want to be around with somebody who doesn't have empathy.
Adeel [24:39]: Yeah, gotcha.
Victoria [24:42]: gotcha okay they don't have emotions yeah yeah yeah yeah okay but that's also the reason why i think that misophonia might have you know might there might be um uh some relationship with with a trauma and it kind of makes sense um but on the other hand maybe it doesn't i don't know have you i've always been misophonic in the sense since you were a child
Adeel [25:09]: I think it started around, yeah, I mean, probably that middle, well, I know it, at least I became more aware of it. Yeah, I guess around that middle school, early high school.
Victoria [25:19]: Ah, quite late.
Adeel [25:20]: Yeah, but I know that having talking to, I'm speaking, I'm not talking proper English, but having discussed it, you know, with... My therapist, going back to childhood memories, I can totally remember times when I was four or five and being in situations where I've had to read religious texts and be very... careful about how I made certain sounds because it was not my first language and kind of being chastised if I kind of didn't you know pronounce things the right way and so I have you know we're starting to connect those dots and I feel like that awareness to sounds started quite early. yeah yeah but you know there's also the idea of epigenetics where things get transferred not in right in your genes but um across generations yeah yeah like and so um again there needs to be a lot of research but um But, yeah, there's, yeah, many ways. That's why I kind of wanted to hear a little bit about your, you know, I wanted to hear a little bit about your parents, just to kind of look at the scene.
Victoria [26:33]: Of course. Do you have other, do you know of other relatives who are misophonic? No.
Adeel [26:39]: Not my own, not my own, no. How about yourself? There's definitely some people where it's very prevalent, but others not so much.
Victoria [26:46]: Yeah. all right no i mean the only relative who's also misophonic is um my uncle's wife who's not she's not related you know related to me so no not related so in her case it's just coincidence really um that's what that's also where but i i was wondering if it was there was any genetic component
Adeel [27:10]: the thinking not like in the genes but epigenetics is um where yeah the environment could could basically affect how your genes are expressed into what you actually are you know like the idea of like making some genes dormant versus not um so yeah there is the idea of yeah and and so um basically epigenetics refers to and i'm not a scientist of that or a biologist but uh epigenetics refers to these markers think of it like a i don't know like a post-it note on your dna to to to tell it to turn the switch on and off to kind of yeah no no express that gene or not so
Victoria [27:53]: Yeah, no, totally. Yeah, no, I just got confused, but yes, absolutely. I understand what you mean.
Adeel [28:02]: So, I think, yeah, growing up, like, how about in school? I know you mentioned, like, exams were kind of tough in certain situations, but, like, did you, let's talk about school and friends, like, did friends start to notice? How was it, like, growing up?
Victoria [28:17]: I think, yes, they just thought I was very weird. Uh, precisely because if I, it was safe, if I was sad, close to somebody that was playing with their pens, I had to tell them because it was, you know, I was just, my anxiety was just, um, escalating. Um, but yeah, I think I was, I was just weird in that sense, which didn't always help because of course then I was bullied for it. Um, I mean, not necessarily for being misophonic, but just, you know, you get a label and then that's it. Yes.
Adeel [28:59]: Where did you grow up again? Sorry, did you grow up in England or Spain?
Victoria [29:02]: No, no, in Spain. I grew up in Spain. Yeah. But then, and I'm not sure about you, what about when people... Because this is not misophonia per se. I think, again, it's more visual related. Although sometimes you can start... hearing all the little noises and that's when people move their leg all the time or when they do you know certain movements especially like when they're nervous and they just start moving the leg no yeah no i think you're just weird no no you're totally right this is called uh it's uh it's called mesokinesia
Adeel [29:39]: oh okay so i've got that too visual yeah yeah no no no you're this is totally normal i mean normal for people like us but uh yeah misokinesia m-i-s-o-k-i-n-e-s-i-a i mean the kinesia part is literally about movement and so um it's yeah it's very much uh yeah very much a thing like i i would definitely get many people get triggered just by seeing chewing or um yeah like certain foot movements so people have talked about curling curling their toes like this watching their parents curl their toes or yeah your legs um yeah no this is this is very common
Victoria [30:18]: the other thing that happened in a in a classroom in the context of the classroom but i was not the lecturer i was um i attended a course of like catalan and there there was a poor man who was taking i think he might have been taking some kind of antidepressants and that make him very very sleepy so sometimes during the during he would just fall asleep and start snoring and that would drive me crazy because I could hear him it was not a you know very it was more deep breathing and that was awful because I couldn't concentrate I just I was just thinking oh please wake up or I'll you know I'll wake you up just to stop breathing
Adeel [31:12]: yeah yeah i'll choke you wake up or i'll choke you or you choose but uh no i mean yeah snoring and loud breathing are usually not my triggers but in that environment totally would be i mean i mean it's it's i wouldn't be able to think about anything else in kind of a lecture hall where everything else is quiet um yeah well yeah i know that's what are your biggest triggers Mine are like throat clearing, coughing, sniffling, especially that... Coughing?
Victoria [31:46]: No. Oh, hold on. Yeah, no, go, continue, continue.
Adeel [31:51]: I was going to say, and this gets into, it's hard to describe, but I'm sure you'll probably get it, but you know that sound when people have eaten some food or drank something, but the food hasn't completely... it's kind of just settled in their throat and they're starting to try to talk and it sounds like they just poured some sand in their mouth and you can basically hear the food kind of you know in their throat yeah I think so but it doesn't I don't think that bothers I haven't picked up on it much which means it doesn't really bother me because otherwise I would have um but the coughing go back to the coughing because i do i want to ask you yeah yeah i mean many kinds of coughing especially if especially if it's um especially like just kind of like chronic like if it just kind of keeps going um you know i guess if somebody is like clearly sick and it's i know the reason for i know the context and i know that You know, after a couple of days or whatever, it's going to be gone. It's less of a problem. But if it's kind of like I call it sometimes, you know, at an extreme level, I sometimes call it kind of casual coughing, like if you're in a bar or something and then somebody just decides to. probably have a little tickle in their throat, but they decide to make a big deal and cough it out. I don't know if that makes sense.
Victoria [33:20]: I do have it too. Because again, with my mom, that happens to me a lot. Like she starts coughing and then she goes like... I just tell her, please stop. Stop it. You know, don't make it.
Adeel [33:32]: You don't need to go all that. You don't need to go that far.
Victoria [33:37]: And now that makes me think that maybe actually my grandfather was also misophonic because my grandmother, every time she sneezed, she sneezed more than once. And when he got to the third sneeze, my grandfather was like, stop it.
Adeel [33:52]: Out the door. He's like in his car going. Yeah.
Victoria [33:58]: So maybe he was also misophonic. I just didn't have, but oh, oh, oh, this is the other thing. He sometimes, um, he had, um, a fake, fake teeth. Is that how you call it? Like dentures. Yeah. He had a denture and he would sometimes play with it, you know, not play as in just bring it down, move it. And that was awful to me. So maybe he was not a misophonic. I don't think he would do that otherwise, you know, if he was.
Adeel [34:26]: Yeah, I mean, we don't usually get triggered by our own sounds. So maybe he just didn't realize it.
Victoria [34:32]: But he would be aware. He would be aware of him doing it the same way that I am aware when I do the... Yeah.
Adeel [34:42]: Gotcha. Okay, okay. Talk to me about the...
Victoria [34:46]: what were some acts of do you remember some acts of bullying was it teasing that kids would do or would they try to mimic the sound too and try to kind of get you riled up not really I think they didn't know it was about the noises I didn't make that explicit I was or maybe they didn't pick up that it was you know it was connected to the noises they just thought that I was weird and I didn't people that played with their pens, which was in a school, in the context of a school, I love. Or sometimes, yes, tune with their mouth open. I don't think they put two and two together, thankfully. They just thought I was weird, and for that reason, they lead me in well and also i think that see i did it i mean i know i was just gonna say i wonder if she's gonna pick on that i did i did um no i think it was also because it went to my school was rather conservative and the fact today was the daughter of a single mom that didn't be that shocked them yeah yeah
Adeel [36:05]: Oh, like conservative isn't like politically conservative. And here's this girl coming from, you know.
Victoria [36:13]: Exactly. A strange family. Like she lives with her mom or her grandparents. What's that? You know. Gotcha. And children don't like different, you know, different children. Yeah.
Adeel [36:25]: Yeah. um and what were your obviously at that point uh i know you're much younger than me so i don't know i don't know at that age if there was like if um if you knew what the name misophonia was but i'm just curious kind of what were your coping methods uh around that time my coping method like earbuds or anything or did you just kind of like you know try to leave with the bullying situation
Victoria [36:52]: Oh, I had, I lived the situation. Yeah, I had to leave the situation. And I think journaling was a big one. I loved journaling. Oh, yeah. That helped me a lot. Because then I had, you know, I had someone to whom I could talk and I could say that, yeah, I could just... say everything i wanted to because of course that person wasn't just it was a journal it was a person so journaling and i think there was a point the ritual of course and i got the point that i just said you know what if i'm weird i love being weird it's like fuck it and in that moment since they couldn't hurt me anymore because it's like you know i like it i don't want to be like you I like the way I am. And that was a that was a massive change because they just they didn't have any power over me anymore. And that was something I'm extremely proud of myself because that happened over a summer. I thought, you know, no, it's not going to happen anymore. This is who I am. That's it.
Adeel [38:06]: I love it. I love it. Yeah.
Victoria [38:08]: I mean, go ahead. Sorry.
Adeel [38:12]: I was going to say, part of a lot of... Okay, here I am being a psychologist again. But part of a lot of, I think, childhood to adult issues are coming down to kind of authenticity and whether you can feel that you're being authentic. And if you can't, there's this tension that sometimes is expressed as... a threat. And so I love that, that you were able to kind of, over the course of one summer, just decide to, hey, I'm going to be authentic and I don't really care if you don't get it or not.
Victoria [38:46]: Yeah. I don't even know how I did it, to be honest, but I did it somehow. And one question I wanted to ask you, do you get, like, stomach problems, as in, like, your get inflammation when you hear constant um chewing i'm just saying it because when i'm i don't leave with my mom now of course because i live in the uk but when i come to try like i come to visit i just get sick do you mean did you say stomach problems yes stomach problems yeah you know
Adeel [39:27]: This is interesting because I've always had... I want to say like all the, every day, but, um, I, yeah, I mean, I, I, I've had definitely, it's not super predictable, but I, I definitely, I mean, I joke about this with my family and friends sometimes because I've had memorable situations where I basically pooped my pants, like in childhood, you know? And so, uh, I just said that on the air and it's been recorded for, for eternity, but, uh, um you know but at least like yes stomach aches um yeah in some cases like i couldn't you know i couldn't um you know like you know i couldn't hold things together completely so uh But I don't know. I just considered it maybe lactose intolerance or something else. But there are definitely situations when I'm stressed out. It's not all the time, but it does manifest itself as kind of stomach issues.
Victoria [40:32]: yeah yeah um and perhaps because of the you know the cortisol goes up bad and then it goes straight into your stomach and then you get inflamed because i i mean to me it's obvious because i mean i love my mom but when i'm around her and i hear her chewing her tongue i just yeah that's it my yeah
Adeel [40:57]: Yeah, no, I can definitely relate to that. Yeah, that's interesting. Again, there needs to be more research into that. But yeah, you're not alone. And yeah, one of my neighbors who also has misophonia, I mean, he got diagnosed with many issues related to stomach issues, which explained a lot of stuff going back to childhood with stomach issues. So yeah, that's really interesting that you mentioned that. So I'm going to ask everybody else who comes on if they poop their pants.
Victoria [41:33]: No, I mean, in my case, it wasn't that bad. It's just...
Adeel [41:37]: I'll hear a hang up. Oh, yeah. No one's going to want to talk to you anymore. No, yeah, that's interesting. Well, so then, yeah, so I guess kind of chronologically, like that kind of takes us to, you know, we talked about school a bit, but yeah, I guess when you got out into the world, like how was, did you notice things change? Like you're able to kind of maybe live on your own. You know, how was navigating like adult life and relationships and things like that?
Victoria [42:07]: um well it's been simple in the sense that if i haven't i've never had a partner i haven't been able to be with somebody that choose with their mouth open that's just like no that's possible um so i'm not sure if that means that i've hoped i was just i've been very strict or um And again, that's being unconscious. It just bothers you and it's like, no, I can't be around you. I don't mind how beautiful you are, how handsome, how attractive you are. No, just no. So what about you?
Adeel [42:53]: yeah i mean well for me like like a lot of people i feel like when um you know left left the uh the cocoon of the home and i have had a little bit more agency as to kind of like you know where i lived and how i spent my time Yeah, I mean, I guess coming out of college and I moved to a new city to take a job. So it's kind of like living by myself and kind of generally was able to kind of, you know, spend time alone if I needed to. So I didn't notice it being a big problem. It wasn't until, yeah, it wasn't until later than when I had jobs where I was starting to be in those open office environments a bit more. um when i started and and my i know my job's got a little bit more senior and more intense that was a kind of a collision course for misophonia because then i started to really know i had to focus and i started to like things like you know my boss like you know having prolonged sips of his diet coke things like that and then then it really spiraled at that point so and what do you do in those instances Oh, what do I do with those scissors? So luckily, so, you know, I mean, I'm in tech, so it's a little bit less formal. And I could, you know, go outside for a walk or something or just generally kind of move around. Again, at that point, I didn't really know what misophonia was. Until when? I think I had just... Or maybe I had recently seen the term, but it hadn't fully kind of like clicked. It seemed like I have a common idiosyncrasy with maybe some other people and some fringe things. So because I think I read an article around 2008 or 2000. Yeah, around that time. And that's kind of around when I was in these. Yeah, I was definitely, I mean, I recognized the symptoms to the point where I could identify with the article. So obviously I had kind of like experienced it. But yeah, I remember I had a job where I was working out of my boss's basement. You know, if people were, there weren't a lot of people there, but if they're making sounds. And I remember it was quite stressful days. And that's interesting because that is a job where I had basically a panic attack at some point. I had to go to the doctor. And so I don't know if it was misophonia related, but I feel like my nervous system was probably burnt out. Yeah. But yeah, but until then, things were okay, but they did it kind of gradually get worse as kind of, I got, you know, more and deeper into my adult life.
Victoria [45:40]: Sure. One question, putting a name to it, has it helped you or has it perhaps even worsened? Because then it's like, oh, I've got this thing, I've got to cure it. Whereas before it was just, oh, this is the way I am.
Adeel [45:54]: Yeah, it's a mixed bag. It's like the arc that a lot of people share is they find out what it is and then they're like, oh, God, this is amazing. I know what it is. And then they're on the Internet all night trying to research it. And then... and then maybe there's a then you're kind of like bombarded with all these um you know coping methods and you try them all out and things seem okay maybe for a few days but then um but then you realize you know this is a real thing and there's no panacea there's no cure so it's it's it's good that it kind of puts a name to it and you're able to kind of be more confident kind of like you know you told yourself that you know i am who i am you you kind of just are more confident about leaving situations or maybe telling people but It doesn't really go away. You just maybe have some more tools and some more awareness. And maybe you can predict that, hey, in that situation, I'm going to have this thing that I know now is called misophonia. So I better prepare myself.
Victoria [46:55]: True. But the problem, I mean, it has happened to me is that before it was them. Whereas now I'm aware that it's me. Yeah. Yeah. so i cannot start blaming people oh this person's just cheers with their mouth open how awful you know it's disgusting i was like no no it's me it's my problem not theirs so i'm not sure it's definitely more fun to kind of like you know make fun of people in your head but yeah once you you feel like oh man this is exhausting enough now i have to like
Adeel [47:30]: you know think about how to like me kind of deal with it yeah it is not to think about that too much true yeah and do you have what about like political family
Victoria [47:43]: Or when you start meeting the parents, you know, the parents of your partner?
Adeel [47:48]: Yeah, I mean, yeah, my parents are, I mean, they know what it is. We don't see them super often. They do live around somewhere, you know, they live around here. And so we get together sometimes in there. yeah they're definitely not the quietest basically when i go to their house i at some point it becomes an acoustic nightmare um and so you know at that point i just have to move around or put on my earbuds or something um Luckily, I mean, luckily, luckily everyone, basically everyone wants quiet time for some one reason or another. We, you know, we can't just kind of like, you know, no one can kind of be around each other for too long. So it is kind of normal to kind of move around.
Victoria [48:38]: Well, not bad.
Adeel [48:39]: And there's also often some self-medication happening with the liquor cabinets with, you know, everyone around there. So, which is again, another like, um it's it's a mixed bag it can kind of like numb things a little bit but then it can also throw people into a more sensitive ranty state um so i try to be a little more careful with that yeah what's been your worst like you know scene when you said like um when you reacted to this you think
Victoria [49:12]: maybe went too far or this was weird that i reacted to it or do you remember anything like that yeah i don't um like because of the context not necessarily because you know you you were very aggressive or anything but just because of the context where you were and then it's like oh maybe a student has said that it's then or anything like that
Adeel [49:35]: Yeah, I'm trying to think. Because, you know, having it from such a young age, I'm used to bottling it up. I think in general, I kind of... I generally kind of bottle up. So here's the thing. It doesn't necessarily come out as related to misophonia. Usually the misophonia has completely destroyed my nervous system and mental state. And it's usually something else annoying that it kind of like maybe will come out as like I'll get upset about something else. I see. Just because... the misfortune has kind of like destroyed me that day or that evening. So it's rarely that I'll... Yeah, I just can't really remember a time when I'm like... So I'm more likely to just shut down. I see. And that can cause its own problem if you're communicating with somebody where they're expecting communication and you shut down, then it looks like you're, you know, then it can cause other problems, right?
Victoria [50:39]: I see, I see. See, perhaps this is the difference in knowing that before, since I thought it wasn't necessarily me, it was that the others were, you know, making these disgusting noises.
Adeel [50:54]: Right.
Victoria [50:54]: I would say it. And sometimes, yeah, it's been on the trains or planes, especially on planes when, you know, you cannot just simply leave. And it's hard to say, just please stop chewing that gum. Well, if you have a parachute, maybe.
Adeel [51:11]: We should give all misophones parachute and oxygen tanks.
Victoria [51:18]: Totally. Yeah. There have been many, many cases when I... But I've said it in those instances and then you have to share a plane with that person for a few more hours.
Adeel [51:32]: Wait, so you have said that? You said that on a plane?
Victoria [51:35]: Oh yeah, on a plane, on a train, anywhere. Except when I, unless I can, if I can move, I'll move. And if I know that I shouldn't, now, especially now that I know that I shouldn't say it because it's not them, it's me, I won't. And I'll just try to deal with it or again, I'll leave the, leave the room, whatever. Or again, if I'm dealing with his students. But if I'm in a plane, if I was in a train, I've always said it. Because I just, I had to. I had to. It's like, this is... Right.
Adeel [52:10]: Right. Yeah.
Victoria [52:11]: Perhaps not the best.
Adeel [52:13]: How have the reactions to that been? How were the reactions to that? Would you ever get in?
Victoria [52:22]: Because sometimes you start looking, you know, staring at the person.
Adeel [52:25]: Yeah, the glare.
Victoria [52:28]: Exactly, the glare. And they think, oh my God, what's wrong with me? Or like, are they trying to flirt with me? But, you know, you can see the other person getting very confused.
Adeel [52:40]: The men are like, oh, she's flirting with me. And the women are like, oh, she's jealous of me.
Victoria [52:45]: I don't know but yeah they're just like what's what's wrong with her why is she looking at me that way um and then it just gets the point because of course it goes up and up and up and higher and higher and the you know the stress um and the moment you just try to be very nice but inside of you you're just exploding um so it's like can you please stop chewing and they just look at you as in are you either someone, they just, yeah, they look back at you with hate and they think, oh, what kind of Nazi are you? But that's usually me. And most of the times people have a storm likely for me. But if they don't, then I don't.
Adeel [53:37]: Right, right.
Victoria [53:38]: I try or I ask to have my seat changed or something like that.
Adeel [53:45]: Have you ever, um... Have you... Have you met anyone who has misophonia?
Victoria [53:56]: I mean, yeah. So this is the thing. I was telling the other day my uncle about... I was talking to my uncle and I told him, oh, I've got this interview, etc. And I told him what misophonia was. And he was the one who told me, oh, I think my wife has it. Because when we go to the cinema, she just... She cannot stand people eating popcorn. And there are all the noises that she doesn't like. But of course he... she maybe she knows now that she's got misophonia and before she didn't so that's how i found out that maybe she is but i haven't had the chance to talk to her um yet so no this is also why i was so amazed by your by by by your podcast it was like oh my god it's amazing you know i'm not i'm not alone or when i heard the uh the there i did it again the bbc sorry The BBC program, that was fantastic. And I shared that with all my relatives. I mean, not all my relatives, but my mom, my parents, like, Dad, please listen to this. I'm just trying to empathize with me. And stopped doing your blog.
Adeel [55:12]: Yeah. Was that the first time you knew it had a name?
Victoria [55:16]: No, no, no. But it was the first time that I heard, like I listened to people talking about it rather than just reading about it and different possible explanations. But it was really good to hear other people's experiences and I felt understood. Yeah, it was great.
Adeel [55:47]: Yeah, no, that's great.
Victoria [55:49]: When did you meet, like, when did you first meet any other misophonic person?
Adeel [55:59]: Oh, yeah, for me, basically, so I found out it had a name, I don't know, around 2007, 2008. And then, you know, part of my online research, and this is like, you know, just, you know, pre-Facebook research. I think. Well, pretty popular Facebook, so it's kind of a little bit hard to find. But there was a Yahoo group. I don't know if you remember. You're so young. You may not even remember Yahoo, probably. I'm just kidding. Yahoo groups was before Facebook groups and Reddit. There was a group about misophonia. It was called... Here's a little history lesson. It used to be called Selective Sound Sensitivity Syndrome. So... um it but didn't get missifornia was also bandied about around that time but it wasn't until a new york times article in 2009 or 2011 when it really became missifornia and so um so i didn't you know i met some people in that yahoo group but i didn't really meet anybody in real life until you know that place where my boss was um um really enjoying sipping his bad coke um that i i bumped into it was a small startup and uh you know i think i was in the in the kitchen area and i found like one of my co-workers who was also i guess running away from that sound and it came up and and i was like dude i know i have found out it has a name and he's like really and actually he was on the podcast like i don't know last year or a year ago we're still friends like years years later But, um, but yeah, I think he was kind of the first person that I, you know, I met. But yeah, but it was really kind of slow since then. It wasn't really until, oh, until about 2018. There was the, you know, there's a Misophonia convention where a bunch of... a bunch of uh talks were given and uh you know misophones kind of all meet and and you know um listen to these well not lectures but talks and meet up um over coffee or whatever and so uh in 2018 there was one here locally to me in minnesota so i went to that that's when i was surrounded by hundreds of misophones i was like this is amazing and um you know you i'm talking to people and i don't have to uh uh i don't have to explain like they only they already know like we have so many shared experiences that it's just like i'm i'm like we're like long lost friends kind of that's what it felt like so um that's why i started the podcast i was like you know this isn't just like people sharing having a couple common um idiosyncrasies we really had a lot of shared experiences growing up and you know you just mentioned the whole stomach thing i mean you know that's also part of it and so i was like oh we have to share these stories it can't just be you know facebook groups of people ranting we got to get deep and so
Victoria [58:56]: Yeah, so cool. Have you ever had any neurologist or talking about misophonia?
Adeel [59:04]: Yeah, I've had, you know, neuroscience. People talk about the neuroscience. I know I've had everybody from 23andMe, the genetics company, to, yeah, like, you know, people in Dr. Kumar's group at Newcastle and Iowa. who did a bunch of um uh who've got you know papers on the brain science the neuroscience of uh of misophonia um it's right at this point it's more like observations in fmris and whatnot of which parts of the brain get activated when there isn't a lot of like why and how but um but i know i've had a number of those
Victoria [59:45]: Interesting. Yeah, I have to check those. I haven't had the opportunity to listen to all of them, but I'd love to understand more.
Adeel [59:53]: I'll be happy to share with you links to the ones that might be most interesting to you. So
Victoria [60:01]: yeah yeah totally and perhaps last but not least i think the connection that uh when we were chatting on instagram there um between misophonia perhaps and true to perform yeah
Adeel [60:16]: and that fear of um textures or dots or repetitive you know repetitive visual patterns did you have a chance to look i have not you know yeah i now remember that uh um uh yeah i should have looked into it more because yeah you know as i mentioned before i try to keep things spontaneous so i didn't look back at her um conversation but but um but yeah you're right i think just for the listeners yeah you're talking about um sensitivity to uh yeah patterns and for me well yeah definitely there are certain like sometimes line formations whether it's like um like a dried um clay you know on a hot you know like um but i remember i was in morocco and uh traveling like years ago and uh taking pictures of um clay in the desert that had been like dried in the sun like very strong heat and it just made these like weird cracking sound cracking uh patterns and i took pictures of it and like look at those pictures it's just really jarring to me and sometimes cracks in the wall you know if if they follow certain patterns uh it just makes me very uncomfortable yeah yeah because i don't wonder sometimes if misophonia is just
Victoria [61:30]: part of a wider hypersensitivity and there might be also visual or kinetic sensitivities that again do not get talked about because you're just focusing on the noise aspect of it.
Adeel [61:52]: I believe so. Yeah. I've mentioned on my podcast that I feel like in five, 10 years, it's not going to be called misophonia. It's not going to be just known as the sound sensitivity. I think, I think, yeah, you're right. I think there's a wider issue that's different than the current definition of sensory processing disorder. I think that's a bit different, but I think, yeah, I think there is something beyond just sound. And I've also mentioned sound is like It's more noticeable because it's the hardest. I feel like it's the hardest sense to hide from. You can close your eyes and not look at those patterns or shaking or whatever. You can obviously not eat something or touch something.
Victoria [62:32]: even if you block your ears you can there's a danger of hearing something yeah you know yeah so yeah and it's more frequent like a noise than tends to be right say you know the chewing you know it's it's most like more likely that you're going to be exposed to people chewing then not necessarily visual certain visual patterns but um yeah
Adeel [63:01]: Well, it was... Yeah, well, this has been great. I mean, we're heading... Yeah, we had some technical difficulties and stuff, but I think we've done a good solid at least an hour maybe here. Even with a little break in the middle, but yeah, this is fascinating. I mean, yeah, like I said, I'd love to... link you to, I don't know, other episodes that you want to hear, but... Do, please.
Victoria [63:23]: Yes.
Adeel [63:24]: Anything else you want to share with people listening, or just... Don't have to. I'm putting you on the spot.
Victoria [63:32]: No. I just think... To be honest, I think I told you that, yes, I try, especially to strangers, so I don't tell them anymore, just shut up. Like, you know, eat with your... Shut your mouth. Or just throw that gum. But I have to tell, like, if there's somebody I know, I keep saying it. Like, there's no way I can just bottle it up as you do. Like, no, no, it doesn't exist. Because I, no. Yeah, yeah, yeah. I would become very aggressive, you know. That anxiety has to come out one way or another. No. I mean, not aggressive physically, just, you know, the...
Adeel [64:18]: the way you communicate or the glare and i just have to yeah the glare exactly the glare right yes well yeah no thanks what about oh sorry you're asking what about me no no that yeah yeah do you do you cope now any differently well yeah okay so yeah i mean some of the um i mean now that i i didn't uh when i started this podcast which was only a few years ago i didn't know what the hell the I don't know what the hell a nervous system was or any of these things, but I had no idea. And so one of the things I do is try to like... And I didn't realize it was related to maybe your child's brain learning to warn you of something, of a danger that maybe doesn't exist or doesn't exist anymore. So if and when I remember, I try to just enter a situation... And taking some time to calm my brain down and just let it know that, hey, you're not in danger. Like nothing is going to attack you or jump on you. And just taking steps to kind of calm that nervous system down and just remind yourself that you're not in danger. is um helps if it's not going to take it out completely but if it can help you not get to the most excited state or at least help you come back down to normal a little bit more then that's kind of a win
Victoria [65:43]: I'll try it. Yeah. I'll absolutely. Do you have anxiety in general? Are you an anxious person?
Adeel [65:50]: No, it's not. No, I don't think so. It's definitely not been diagnosed, but no, but I try to, I don't know. I try to, I'm generally regarded as pretty relaxed and upbeat. And, and so, no, it's really only if I'm kind of pushed to the, I'm kind of like, well, that's the misophonic trait, but it kind of Jekyll and Hyde, like I'm usually relaxed, but if, if it's like,
Victoria [66:14]: there's a certain point where i do get kind of like anxious but it's like it takes a while to get to that point interesting because again this was my as we were discussing before just pure hypothesis but i thought it had also something to do with anxiety because i do have uh I, yeah, I'm, I cope with anxiety issues.
Adeel [66:48]: Yeah, well, that's definitely, there's definitely a wide overlap, whether it's diagnosed or not with, with anxiety, OCD, bipolar, you know, ADHD, that, that comes up on the, on the podcast a lot, those conditions. So there's definitely a, yeah, high overlap. A lot of those comorbid conditions go along with misophonia. Well, yeah, Victoria, this was super, super awesome to talk to you and, yeah, talk about all this stuff. Yeah, thanks for coming on.
Victoria [67:20]: Yeah, thank you so much, and thanks for doing this. I mean, at the end of today, I'm not sure if any scientists have asked you, but at the end of today, what you're gathering is a lot of data about misophonia that any, you know, qualitative data that any any scientist I think would be super fascinated to use to understand more about misophonia as you've said not only the neurological side of things but more the contextual the why it happens when it happens and where like if it has to do with culture but thank you so much
Adeel [68:02]: Thank you again, Victoria. Fantastic conversation. And I loved sharing my story a bit more. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at helloatmisaffointedpodcast.com. or go to the website missafoneypodcast.com. It's even easier just to send a message on Instagram at missafoneypodcast. Follow there on Facebook at missafoneypodcast and on Twitter, it's missafoneyshow. Support the show by visiting Patreon at patreon.com slash missafoneypodcast. The music is always by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [69:20]: you