Kateřina - Navigating family dynamics with Misophonia.
Transcript
Adeel [0:01]: Welcome to the Misophonia podcast. This is the third episode of season two. My name's Adeel Ma and I have Misophonia. I don't know if it's a coincidence, but I've got a lot of conversations with Misophones in Europe. Today's is with Katarina, who lives in Prague in the Czech Republic. She says this is the first time she's spoken with someone who has Misophonia. And as a reminder in this chat, she's actually also speaking with all of you as well. One thing she talks about a lot is how this has affected her relationship with her family growing up, especially with her dad. I know this is something a lot of people will identify with it, and I know it really did for me. Another thing I've been doing actually recently is connecting people with past guests. So if there's an interview that really resonated with you, let me know, shoot me an email, and I can try to make a connection. That's hello at misophonia.com. Also, you can send me DMs on Instagram at Misophonia Podcast or Twitter at Misophonia Show. All right, here's my conversation with Katerina. Welcome, Katerina. Welcome to the show.
Katerina [1:12]: Hi, thank you very much for having me.
Adeel [1:15]: So you, I think you found out about, you reached out over Instagram, I believe.
Katerina [1:20]: Yeah, that's right.
Adeel [1:22]: Yeah, that's great. So why don't you tell us kind of where you're from and, yeah, where you're from and kind of what you do. Are you a student or working?
Katerina [1:31]: Yeah, so I'm from Prague. I'm from Czech Republic. And, yeah, I'm 18. I'm trying to finish high school this year, which has been kind of a problem with the whole corona thing. so yeah that makes it a bit different um yeah but i hope i will get to that and then probably you know some other university maybe something i hope for that if i get to some So, yeah.
Adeel [2:00]: Yeah. So, why don't you tell us, so you're in school right now. You were in, you were obviously going to classes and now, obviously, because of the lockdowns, you're at home. Was it kind of rough for your misophonia in school? I've heard a lot of stories about, you know, all across the world, it's, you know, students are not the most considerate of people like us. So, I'm just curious how that was like.
Katerina [2:25]: Yeah, I think it was really hard at first because I developed it over time, as most of us, I think. But at first, when I really started to think, yeah, this bothers me, and I tried to express it to my friends, they were kind of like laughing and making fun of it, kind of. And I think they were making it on purpose. for some time. And when they really started to notice that it really, really bothers me, I think they stopped. And now they're really understanding. But it took time.
Adeel [3:08]: Yeah, that's kind of what you hear a lot. You hear people kind of mocking it at first and then you find out who your real friends are and then they kind of come around. So did you did you start talking to them when you found out that Misofonia had a name? I'm curious how.
Katerina [3:25]: Yeah. Yeah. I found out about a year ago, I think. So not that long ago that it had a name. And I was so relieved. Like, yeah, it was it was really surreal because for my whole life I was thinking, like, I'm crazy because nobody like reacted the way i reacted um yeah so it was it was really hard for me growing up um but when i found out about it like it that it has a name i was just so relieved and i tried to share it with my friends like hey um you know i had this thing and i think it's called misophonia and it has a name and people have it i'm normal people other people have it so you know that made it more normal for me um and i think um you know i found some kind of articles and i shared them with my friends and yeah it it made it it made it more more normal for everybody because you know they learned about it i learned about it and yeah it was it was a really really big relief for me
Adeel [4:45]: Did you, by any chance, find any of your friends or anyone you know also have misophonia, maybe?
Katerina [4:50]: No. No, you're the first person I'm talking to ever that has misophonia. So this is really, you know, yeah.
Adeel [4:58]: Yeah, I'm glad you reached out. And as you know, there's many people like us. And then, so going back, you said this was bothering you for a long time. Do you remember kind of the beginnings?
Katerina [5:14]: I've developed it over time, but I remember from a young age, the biggest trigger for me was my dad, which I really try not to blame him. But, you know, it's really hard. And I think the thing that's really made it really hard for me was when I was about I think six or seven my family got a camper which if you're familiar with it it's a car that you travel with and it has like a small kitchen small shower you know two beds it's just like one room and that's the that's the whole car and you're like stuck in that with other people for me that was my mom and my dad um yeah and my dad is um kind of really loud person in that sense like he chews really loudly and stuff like that um yeah so i was really exposed to those kind of things um yeah and there was no escape for me because my bed only had like a curtain and that was it and then there was my dad chewing his food like next to me like yeah so I was really exposed to that and it made my holidays really hard I wasn't excited for traveling I wasn't excited for you know spending time with my family which is which is Just sad, just really sad.
Adeel [7:05]: Yeah, it's a common thing. And yeah, it is. Yeah, we feel that kind of like kind of guilt and shame and whatnot that comes with that. And you said it started to was it was a camper. It was the was these road trips where you first noticed it. And you said it kind of expanded. Did that mean expanded to other people or or other kinds of triggers?
Katerina [7:28]: Yeah, I don't really remember like exact moment when I was like, yeah, this bothers me. I think that it always was there in the back of my mind. First it was just my dad, but then it expanded. Now it's also my mom and friends and public transport is really hard for me.
Adeel [7:59]: Yeah, so let's talk about that. So you obviously, well, now you're at home. I'm assuming you're living in something bigger than a camper, so at least you have maybe some kind of privacy.
Katerina [8:09]: Yeah, yeah.
Adeel [8:10]: But when you used to go out in the world, was there, like, headphones all the time?
Katerina [8:14]: Yeah, I live in headphones. And I am, like, I feel really bad sometimes because I feel rude to other people when, you know, I'm in school and they're having lunch and I just can't. So I put my headphones in and yeah, I feel like I'm being rude, but that's the only way I can handle it.
Adeel [8:42]: So, yeah, I mean, yeah, that's good. Yeah. We eventually all, I think hopefully get over that and just be like, well, this is how it's the only way you can be productive. And honestly, it's better than you maybe lashing out or reacting to somebody. What do your teachers say? Do they mind or do you just kind of not say anything?
Katerina [9:03]: I've never really expressed it to them, I think, but I remember one moment when we were writing a test in chemistry and it was, you know, winter and everybody had their throats sore and they were coughing and sniffling and it You know, I've never been like physical with anyone or something, but I throw some faces, you know, on people.
Adeel [9:36]: The glare, yes.
Katerina [9:37]: Yeah. So when I was throwing those on like everybody, like every second of the test, he said something like, please be quiet or something. But that was like the only encounter with teacher like that I had.
Adeel [9:55]: in that sense um yeah yeah so over here that you know over here people some people have said that you know they're able to get some kind of like accommodations at schools and you know some teachers are trying to be um you know accommodating it sounds like what's the situation i can check in general is there like no understanding of misophonia no chance of anything
Katerina [10:21]: yeah i've never met with anybody that known about it before um so yeah it's really hard i think um i love czech people but they're really judgmental overall so it's really hard to explain it because you know it sounds um It sounds weird at first.
Adeel [10:47]: It does, yeah, right. It sounds like something that people are annoyed by, but they don't realize that it's much, much more.
Katerina [10:58]: Yeah, everybody says, like, yeah, everybody gets annoyed, just get over it, but it's not that simple.
Adeel [11:07]: Is that what your parents said?
Katerina [11:09]: Yeah, at first. I think... know with my dad um it's kind of hard uh in this sense because he has his pride and i think um he doesn't like to be critiqued um so when i like try to politely say please maybe could you be more quiet or something um it's you know he says yeah sorry at first but he doesn't really stop or I think he he forgets and I don't blame him I don't blame him because he is living in my body so he doesn't really know how it feels but it's just so hard I feel so bad for critiquing him or something and it really made our relationship harder I think really really made it harder because I'm at the point of avoiding him, I think. And he notices. He notices and he asks, like, what's wrong? And I just feel bad. So I don't know what to say. Yeah. So it made my relationships and my family really, really hard.
Adeel [12:29]: Yeah. Yeah. That's not, you're not the first one I've heard that happen to. Yeah, it's a common unfortunate side effect of this. Do you also have visual triggers that go along with your misophonia?
Katerina [12:46]: Yeah, I can't really look at people when they're chewing stuff. I can't do that.
Adeel [12:53]: Even if you don't hear it, it's kind of like your brain is telling you something's going to happen.
Katerina [12:59]: And especially... I don't know, but my dad is like the biggest trigger. So especially with my dad and I don't know why. I don't know why, but yeah.
Adeel [13:10]: Your brain's probably been trained.
Katerina [13:12]: Yeah, that's a big one for me. Yeah. Yeah.
Adeel [13:16]: And so I guess you haven't, well, obviously you haven't talked to, have you even thought about approaching like a professional? Obviously, you know, you haven't talked to anybody else. I'm wondering if there is a culture of like psychologists or psychiatrists or therapists that you would talk to maybe about other mental health issues.
Katerina [13:41]: Yeah, I have my psychologist because I'm really sensitive person. So I take a lot to my heart. So I need that. But yeah, I mentioned it to her. I mentioned it. But it was like at the end of the last session we had. And that was like, I don't know, like a half year ago because I didn't really have any other problems. So I think I just forgot to talk to her. after that. So I mentioned it and she, I think she told me she known someone that had it also. Um, but I don't think we really got into it. Yeah.
Adeel [14:26]: Gotcha. Okay. And that was your last visit with her and now it's just kind of interesting. Okay. Yeah. I'd be curious if you ever, hopefully you won't have to go back to her, but if you did, what, what she might say, I was just talking to somebody who, who also had a therapist, and they hadn't heard of it, but they actually then went to do the research and came back and had some actually good advice. So sometimes, even if they don't know, they might be interested in learning about it.
Katerina [14:53]: I don't know how the culture is over at Czech Republic, but... I don't think there is, like, any culture in this sense. Like, in the misophonia, I... As I said, I never heard anybody say misophonia in Czech other than me. like yeah I'm wondering how did you so were you doing a Google search on like hearing issues how did you find out about it yeah I think it was some random YouTube video and there was this guy and yeah it's like these two brothers and they were eating and he expressed that he wanted to listen to music while they were eating because he's annoyed of the sounds and i was like oh i know that i know that feeling and then he said the word misophonia and i was like what um because i never heard of it so i googled it and yeah that's when the relief came because yeah and then i started googling more googling more and and i found some um little document on YouTube which some it looked like some group of students made it and I scrolled through the comments and yeah that was a big one for me because all these people talking about it and I was like wow I'm not the only one
Adeel [16:28]: Yeah, it's amazing. And are you still kind of, and has that, obviously it helped you right away by giving you some relief. Has that changed? I mean, what have you learned since then? Has that changed kind of how you've been dealing with it compared to before you knew about it?
Katerina [16:45]: I think it's really nice for me to have a label on it. I don't like labeling stuff, but for this, it really helped me because when I tell other people, you know, Could you please maybe be a bit more quiet? It's really nice to follow it up with, I have this condition, you know? Other than, yeah, it just really bothers me. But if you say, yeah.
Adeel [17:14]: Yeah, I was just going to say, I've heard that if you frame it as kind of, I have a condition that reacts to something you just happen to be doing, it's better than like... stop doing that, you know, or the person or whatever.
Katerina [17:30]: Because then people think that they are just hypersensitive and overreacting. But if it has a name, you know, then they can Google it. I can explain maybe a bit more and it's easier for everyone, I think.
Adeel [17:45]: So you're now at home, kind of finishing up school. Have you thought about kind of what you want to do, you know, university and later in life, knowing that, you know, you could be working in an environment that could be noisy, but there are, you know, maybe you want to do something quieter. Have you kind of thought about how this might kind of evolve in your life?
Katerina [18:05]: yeah um i think i can i i want to go to a university of marketing or some kind of thing like that um yeah and i'm really i'm really scared of the future if i have to uh work in like shirt offices i don't know what i will do like um I will have to live in headphones like 24 seven. Yeah, I do.
Adeel [18:30]: And yeah, a lot of, you know, a lot of people, especially with like, you know, AirPods and stuff, it's become a little bit more acceptable to have. earphones on. Um, but yeah, shared offices were kind of tough luck. Well, the good thing about the one good thing about maybe this COVID coronavirus is that there are less, there's going to be less open offices and I think going back to separation, which, um, yeah. So, um, but yeah, that's, that is definitely something to consider is like, yeah, the, um, office space that you might go into.
Katerina [19:11]: Yeah, I'm really scared of that because, yeah, I can't really, you know, when I'm trying to work, I need to have my quiet time and I really need to, you know, think. But it's really hard to think when you have all those triggers around you.
Adeel [19:33]: Working from home is usually good, especially if you can find a quiet room.
Katerina [19:37]: Yeah.
Adeel [19:39]: So you find out about it online. I'm curious if you looked on like, you know, there's Facebook groups, there are Reddit groups. I'm sure, you know, sometimes people say, you know, where's everybody from? And people say where they're from and whatnot. It'd be interesting if you wanted to kind of connect with other people around you. I don't know if you've gone online to some of the misophonia groups, but that might be a good place to find other people that you can kind of just...
Katerina [20:05]: that are nearby that you can kind of meet up.
Adeel [20:08]: Maybe not meet up, but at least they're around you.
Katerina [20:11]: I've never really thought about it until yesterday when I was listening to one of your podcasts and there was this girl from London, I think it was. Oh yeah, Isabel. Her second to last podcast. And yeah, you told her that there were people in London and she was really surprised. So I thought about reaching out and like maybe searching for some Facebook groups.
Adeel [20:37]: Yeah, I can send you, yeah, I can post some, you know, I can send you some, but they're not that hard to find. And yeah, there is, I mean, there's in the UK, I mean, there's a lot of research and obviously a lot of people. So hopefully she found someone. I know Amsterdam has a lot of research. So there is a lot. I think it shouldn't be that hard to find other people.
Katerina [20:58]: yeah I will definitely definitely think about it because that would help me I think
Adeel [21:05]: Yeah, because we've set up some kind of regional groups here where we have like just like a Zoom call with 10 or 12 people. And it's just like once a week. And you can kind of like get to like decompress on the week and just kind of like, okay, these are my problems. And maybe get some advice from other people. It's just a nice way to kind of like end the week.
Katerina [21:27]: Oh, that would be really nice.
Adeel [21:29]: Yeah.
Katerina [21:29]: Yeah, yeah. I would really like to participate in that. Yeah.
Adeel [21:34]: Yeah, so maybe we'll try to set up kind of a Europe group or something.
Katerina [21:39]: Yeah, that would be perfect.
Adeel [21:40]: Because sometimes the online groups get a little bit noisy and just kind of constant ranting and whatnot. It's hard to, like, you know, make connections. So, yeah. That might be interesting. And you don't have any siblings, do you? It's just kind of you're living with your parents?
Katerina [21:57]: No, no, no. No, it's only me and my parents, yeah.
Adeel [22:01]: Got you. And do you have, so, you know, do you have family get togethers and whatnot? Is there like an extended family that also triggers?
Katerina [22:11]: Yeah, I have a bit of extended family, but nothing, nothing like really big. I have some cousins. I have my grandma, grandpa, but that's kind of it. Yeah, we get together on Christmas, I think. And yeah, like one or two times a year.
Adeel [22:32]: So what do you do in those situations? Is it kind of avoidance?
Katerina [22:39]: Yeah, I try to, I really try to... Take a walk around the neighborhood or something? Yeah, yeah, yeah. When we are like eating together, I really... Try to eat fast. yeah i read i eat really fast and you know then i try to go to toilet or something because i need to avoid it um so yeah that's actually a good tip the bathroom is a can kind of be like a great safe space yeah because you know everybody goes to go to the bathroom yeah so you just put your food in the mouth in like 30 seconds and then you're gone right right right yeah
Adeel [23:21]: Yeah, I mean, holidays, yeah, Christmas and Thanksgiving here at least can be kind of, they're usually considered kind of, misophones generally dread those holidays because you got to get together with everybody.
Katerina [23:34]: It's the only time of the year like when I actually eat with my parents because, yeah, that's one thing that I'm really happy about is that when I found out about like that misophonia exists that it is a real thing I was like I have it and I think you know I have it when I explained it like what it is what it is and I was like would it be possible if from now on I was just you know eating in my own room yeah and my parents were really understanding in that sense sometimes my dad is like yeah come eat with us it will be okay I will really try hard to be quiet but I know that he will forget and after a while and it will be the same so I'm like, oh, thank you, but no, I think I'm going to pass on that because it would be hard for me.
Adeel [24:54]: I know someone else who I interviewed said he kind of eats kind of standing up, so his family, his kids and his wife kind of sit down, but he's kind of between the kitchen and the dining room eating, so he's kind of on his feet. and so he can kind of modulate so he can kind of like participate in the conversation but also just kind of slip out if like he needs to you know needs to get away for a second and come back and me and sometimes maybe just just the um just having that ability to to move can kind of calm things down a little bit in your brain yeah i think so that's really yeah that's really interesting but
Katerina [25:39]: I think my senses are too, you know, I can hear like everything.
Adeel [25:45]: Yeah.
Katerina [25:46]: And yeah, I need to be in a different room with locked doors and that's it because I really can't. Yeah, sometimes I really can't.
Adeel [25:58]: Yeah, some people, so some people with misophonia are, some people have like tinnitus or things that are masking things, but some people have extremely sensitive, such sensitive hearing that they say they can kind of hear almost every conversation or every sound in a room or in kind of several rooms away. Are you one of those people?
Katerina [26:17]: Yeah, I'm one of those people. Yeah, I can hear everything. It's crazy. Yeah.
Adeel [26:22]: So you say you live in headphones. Would even like your plugs kind of help too?
Katerina [26:29]: Just to kind of like... Yeah, I live in headphones. It's kind of funny. Or funny. It wasn't really funny at that time. But now when I look at it. But every year I go to this exhibition in Amsterdam. It's like a work thing. And my dad goes too. and when i was a bit like smaller i was i don't know like 14 15 um we had shared room so i was with my dad and you know it's in winter so the exhibition it's in winter so it's um You know, he had been coughing a little and he had been sniffling a lot. So and it was at night and I was laying there, you know, and I didn't have like normal headphones. So I had to sleep with those big ones, those big ones when you, you know, when you're gaming.
Adeel [27:40]: Oh, yeah, over-the-ear headphones?
Katerina [27:42]: Yeah, and I had to sleep with those. And I was just crying myself to sleep because it was unbearable. And I remember at the end of the week, I was asking my dad maybe once every two hours to maybe be a bit more quiet. And at the end of the week, he got really angry with me. and that was uh at times when we didn't know about the condition like we didn't know it had a name um yeah and he i think he called me some names and he started to do it on purpose and that was really hard for me and i totally broke down um yeah um it was really it was really hard at the time but What age was that? I think when I was like 15. Okay, okay. I think, yeah.
Adeel [28:48]: Gotcha. yeah yeah it may be funny to look back on yeah the headphones part at least but uh yeah yeah yeah was it a common kind of um experience where there would be kind of like a flare up and then your parents would kind of yeah yeah yeah with yeah with my dad especially i really try not to blame him again yeah that's a good perspective but it is yeah it is yeah yeah
Katerina [29:20]: you know, he has his pride again and he's, yeah.
Adeel [29:25]: Well, I might be part of, you know, maybe speaking out of term, I might be part of Czech culture. And that's why I think it might be, I think it would be useful to, helpful to meet other people in your area who might have similar shared experiences too. I mean, we all have very shared experiences. I know. Yeah, I can kind of like tell stories that are not too dissimilar. But yeah, it might be really interesting to have. I think people near you to be able to kind of just talk to you. We're all allowed to go outside the house again.
Katerina [29:59]: Yeah. That's because I was, I was really, uh, when I discovered your podcast, I was really excited because I had all these people, you know, and, um, it was, it was really interesting to listen to every story. I didn't hear like all of them, but you know, um, Yeah, it's okay. I'm a really shy person, I think, and I can get a bit nervous, as you can hear, probably. But, yeah, and I thought about it, and I was like, wait, I could talk to this person that has misophonia, and I could share my story. And I was thinking about it for maybe 10 minutes, and I was like, oh, I can't do that. too introverted for that. But here I am. Most people here are.
Adeel [30:56]: Yeah, most people here are. And you're not talking to me. You're sharing it with hundreds of people who will be listening to this. So, yeah, is there any, you know, I know you're shy, but I'm just kind of new to you. I'm just curious if there's any other things that you want to ask or kind of other tips or anything you want to share about your experience in Mississauga.
Katerina [31:16]: Maybe when you talk to, like, so many people with me. So, just... what are like common things people do other than like headphones, you know, because yeah, that's like common. You put headphones in and you call it a day, but it's, uh, it can get a bit rude. So, or I feel rude.
Adeel [31:37]: Yeah. It also kind of wears on your ears. I don't necessarily want to have, I've never gotten noise cancel. Well, I've never worn like the big noise canceling headphones are very long. I just kind of, yeah. I try to kind of moderate that a bit. Um, So one thing people do is just kind of, if they're in a situation, they, A, they try to kind of have, know the exits, like have a way to kind of move away. If it's kind of a meal or something, one thing helps me and helps other people is like just telling your brain that it's, it's, you know, it's a meal, so it'll be over in 20, 30 minutes. And so just kind of, um, just kind of telling you, reminding your brain over and over, just close your eyes and remind, tell your brain that it's, you know, not to panic because it's a fight or flight situation that your brain is feeling. So if you can just calm your brain and just say, nothing's going to hurt you for the next 20, 30 minutes, just go with it. No one here is here to hurt you. I find that helps me. And I don't remember to do that all the time, but that's one thing that helps me. And I've heard that help other people. Kind of time boxing, kind of saying this period of time is not going to hurt you. So try to get through that. As far as other tips, yeah, it's just a tough thing. It's, you know, obviously trying to tell people is just kind of, it's a tough hurdle to get over. Yeah, it is. Because you never know what the reaction is going to be. Yeah, like you were trying to do as trying to kind of frame it as it's not, you know, it's not that person that's the problem. It's kind of your condition that is not able to process normal sounds, some normal sounds. So kind of framing is kind of a problem with your neurology, your brain, which is where the research is kind of going. Framing it that way can kind of help. I've heard a lot of people say that. Yeah, those are a few things. And then the other thing is, like I kind of mentioned a little earlier, at colleges and also at work, people here are able to use kind of the... um federal laws to like disability laws to try to get um special consideration for like exams like school exams to have them in a separate room maybe you know um or be able to wear headphones and and so these people have been yeah so people have been able to go to their human resources at their work or um their professors and teachers at school and use kind of the disability laws to kind of um get special help. I don't know how that works in Czech Republic, if that works at all, but that's another way people have been able to help. And then other than that, going to psychologists sometimes helps, although it's hard to find one that knows what you're talking about.
Katerina [34:42]: Yeah, it is.
Adeel [34:43]: But yeah, but meeting, you know, connecting with other people is a good way to do it. And hopefully more awareness leads to more people, you know, being nicer about sounds and hopefully to more research as well.
Katerina [34:57]: Yeah, I think this is like a first step for me to in connecting to other people, because I think this would really help me to, you know, have the community of people that have the same problems as me. Yeah, nobody really can understand it. You know, people can be understanding, of course, but they will never know how bad it can feel. Right.
Adeel [35:28]: Yeah, it's kind of game changing when you know there's a community. You won't always, it's not going to help every situation, but yeah, it's amazing how similar our experiences are. and yeah, just can kind of help just having other people to listen to and talk to.
Katerina [35:45]: Yeah. I'm really excited for that.
Adeel [35:49]: Cool. Well, Katarina, um, yeah, it's, it's great talking to you today. Um, yeah, I'll follow up with, um, you know, resources, um, and also put them in the show notes on online groups and, uh, maybe connect you with some people that, uh, I think would be a great, uh, great people to talk to, but, uh, Yeah, I want to thank you for, you know, coming on as kind of the first time you've talked about Misophonia. It's a big step. So I really appreciate that.
Katerina [36:17]: Yeah, thank you very much. Yeah, thank you very much for having me. It was a blast. Thank you.
Adeel [36:22]: Thanks everyone for listening. I hope you enjoyed that chat with Katarina. Let me know what you think on Instagram or Facebook at Misophonia Podcast or Twitter at Misophonia Show. Let me know how you're doing in lockdown. I know it's about over two months in and I hope everyone is finding ways to cope with any triggers that might be happening. If you'd like a sticker mailed to you, just shoot me a mailing address at hello at misophoniapodcast.com Join me again next Wednesday for another great conversation. Until then, wishing you health, peace, and quiet.