Cleo - Navigating life and relationships with misophonia

S3 E13 - 12/30/2020
In this episode, Adeel has a conversation with Cleo, who shares her experiences living with misophonia. Cleo, growing up in Hamburg with a mother already afflicted by the condition, had an early introduction to the struggles of coping with sound sensitivities. Unlike many, she had a form of early guidance on managing her misophonia, thanks to her mother's understanding and support. Cleo discusses how misophonia affected her relationships, particularly highlighting the lack of understanding from past boyfriends compared to the empathy from her current partner. She speaks about her career choice as a freelance graphic designer, which allows her to work from home, minimising triggering situations. The conversation also touches upon the social challenges of misophonia, including difficulties in communicating the condition's seriousness to others who might not take it seriously. Cleo finds solace in background music as a coping mechanism and enjoys attending the Misophonia Association Conventions, where she finds a sense of community. Despite the ongoing challenges, Cleo emphasizes learning to accept oneself and find ways to navigate life with misophonia, advocating for greater awareness and understanding of the condition.


Adeel [0:00]: Welcome to the Misophonia podcast. This is episode 13 of season 3. My name is Adeel Ahmad and I have Misophonia. This week's episode is the last of 2020, a truly memorable year. This is a follow-up to last week's amazing conversation with Jane. Cleo is Jane's daughter. She also suffers from misophonia, and now we hear about life from her perspective. Technically, it was recorded before Jane's due to some scheduling conflicts, so it may sound a little out of order at times, but here we get to listen to how Cleo has handled relationships of all kinds, friends, boyfriends, and especially family, having a parent who's a misophone and able to provide some guidance. But as we're all well aware, this ultimately is a very personal condition that we need to figure out how to handle for ourselves. Don't forget, of course, you can book your own interviews for next season. They're starting to fill up more and more. This will be season four. It will be recorded in March, all on Zoom. And you can go to, find the Be A Guest link, and you can easily book a slot there. All right. Now here's my conversation with Cleo. Welcome, Cleo. Welcome to the show. Good to have you here.

Cleo [1:18]: Hi. Thanks for having me. so yeah you mentioned uh yeah um you mentioned you're half english half german you want to just mention kind of where you're from um yeah i live in hamburg in germany um lived here my my whole life my mom's english my dad's german um yeah so i've never lived anywhere else that's why my english isn't perfect but uh hopefully good enough

Adeel [1:44]: Oh, yeah, more than good enough. That's great. Do you want to maybe, I guess, what do you do in Hamburg?

Cleo [1:52]: I'm a freelancer, so I probably also because of misophonia. picked a job where I could work from at home with a lot of people. So I always enjoyed that. So I work at home. I'm a freelance graphic designer, but also do a little other jobs, but normally actually just things from at home, which makes life a bit easier for me.

Adeel [2:20]: Yeah, have you always, did you try to freelance from the get-go?

Cleo [2:25]: I had like little mini jobs in a production firm for advertisement, which was quite cool. But I stayed there actually for quite some time, maybe for six, seven years. But it was like a mini job, so I had just certain hours in a week that I had to be there. This whole... from mornings to the evenings desk job thing that normal people do. That was never really my thing. So I always try to figure something out that I can, that I don't have to do that because it's just, yeah, it's just not my thing. I like my quiet. I like my space. Not everyone can do it to work at home and actually finish the tasks they have to do. But yeah, I can, it's better for me. I can do it better.

Adeel [3:16]: Oh, I totally agree. I'm, I'm, I'm, yeah, I'm kind of the same way. I, um, yeah, not everyone can work from home, but, uh, you know, if you can be, if you can motivate yourself, that that's great. I mean, I, I have fun in offices too, but, uh, um, but yeah, I, at this point I'm, I'm more than happy to work from home and have that, have that freedom.

Cleo [3:37]: Yeah. Yeah.

Adeel [3:39]: So yeah, so you're freelancing as a graphic designer. Um, Do you want to, let's go back to kind of early days. So you grew up in Hamburg. And what was life, what was the childhood like for you? Was that kind of where things started to get rough for you?

Cleo [3:57]: Well, the thing is that I don't really, there's not like a real breaking point that I can remember where I figured, oh, something's wrong. um my mom also has misophonia so she used to tell me um that noises were never my thing that um if she wanted to vacuum the house um i started crying because of the sounds if all the schoolmates classmates um started to cry i cried it's like a Certain noises, I just couldn't deal with them even as a baby. Oh, really?

Adeel [4:31]: Going back to infant years? Wow.

Cleo [4:34]: Yeah, there were a lot of things that she just noticed weren't that easy. And I think that in my teenage years, it really started that I can remember that all these things started to annoy me. And because my mom had it too. And before... puberty i think it was um when she like we were sitting at the dinner table and she didn't like the eating noises and she then told me to to stop a certain thing i hated that even though i understood completely what she meant but being the person who um is being told to stop it or to stop a certain noise or movement i never i could never understand it even though I should be the perfect candidate to understand it because I have the same tics, same things, problems. So, yeah, I think it started a bit after puberty hit. So I was always a bit, didn't like certain noises and then it always just grew and it got more.

Adeel [5:47]: And that's interesting. Did your mom, when your mom noticed it as you were an infant, did she recognize, like, did she have, I mean, did she have this phonia at the time too, herself? Or was it maybe something that she picked up later? I mean, usually people get it early, but I've heard cases where it starts a bit later. So I'm just curious.

Cleo [6:10]: No, she had it already. So I grew up with someone in my household having misophonia. No, she had it since her early childhood, I'm pretty sure. So she knew... which was actually quite nice for me, even though it's horrible to say that you don't want your mom to have the same thing. But growing up, she just knew what to do and what not to do. And she never got angry or frustrated or mad when there were things that I... didn't want to hear or I couldn't cope with because she just understood fully what it felt like. So she's the only person I know.

Adeel [6:49]: Did she talk about it with you growing up?

Cleo [6:51]: Yeah.

Adeel [6:52]: Even though there was no name, really, probably.

Cleo [6:55]: Yeah, no, there was no name. It was just like sensitivity. And yeah, you're just like your mom. You're also sensitive to noises. So it was always like more of a you're sensitive to something. um then having a name for it and she was actually the one who a couple of years ago told me called me up, very, very excited, telling me that there's actually now a name to it or a name for it.

Adeel [7:19]: Okay, so she discovered it.

Cleo [7:20]: Yeah, she discovered it. And she was, she said, finally, now people, I can tell people what it is. And it's not just me being silly and stupid. And it's actually a real thing. And other people suffer from it too. So I think a lot of people feel that way, that they were very happy that there was a name to it.

Adeel [7:40]: Absolutely. And what about other people around you? So you had your mom, who was luckily kind of an ally, except when she would tell you to be quiet. Myself, yeah. But how are other people close to you, maybe other family members or friends?

Cleo [8:02]: um well i have to say that my current boyfriend we've been together for two two and a half years now he's the first person or the first uh they say guy i had a relationship with who actually tries to understand what i'm going through um the men i dated before were Yeah, they made fun of it. So if there was something that I didn't like, yeah, it was horrible. It's like I also don't like spiders and people then chasing me with bugs or spiders. I don't know why people think it's funny, but there are just some people and it's the same.

Adeel [8:38]: Yeah, above the age of nine, I would say.

Cleo [8:42]: Yeah, it's not really appropriate anymore. No, so yeah, I had some people who, yeah, would just make fun of it. I never understood that, that if there was something like an eating noise or I also have it when you pick your fingers or tap something on the table or with a pen. So there are a lot of things that I actually don't like. And to continue that then after me saying, oh, please stop. It's like they laugh and then they continue and they continue louder. just drives me crazy.

Adeel [9:17]: So a partner doing that. So how did, I'm just curious, is it pretty much a litmus test? Like, you know, it's pretty quick that they're at the door or do you?

Cleo [9:31]: kind of try to think that you can change them or think that they'll change I've never really yeah I'm curious how that process yeah I always I mean I always believe in the best in people which has good things and bad things no I always thought that they're going to change I thought that at some point if it's always if i if i say it again and again at some point they're gonna have to believe me that it's not just a game i'm playing to i don't know get attention or just to be the silly girl that it actually is a problem but um if they're just so many things that that add up and nothing's really been taken seriously then it's just um then they can go it just doesn't make sense anymore yeah

Adeel [10:17]: I mean, in hindsight, do you feel like if, you know, it sounds like it's not going to happen again with your current partner, but I'm curious if you would tell, if let's say you were giving advice to somebody in a similar situation as you, would you tell them? him or her to just leave? Or because it's, you know, it's going to make your life torture? Or you can skip the question. I'm just curious if you had any strong thoughts about that.

Cleo [10:44]: No, I think I have to say, yes, leave. I mean, I also think that the older I get, there are certain things that get worse, that they always have the feeling you um noises or things coming that i don't like but i also got much more um i don't know how you say it i just respect myself too much to uh say okay i'm gonna have a boyfriend again who just makes fun of me i know what i what I can deal with and what I can't deal with and it just makes me emotionally sick having someone around me who makes fun of me with something that I can't it's not my fault I can't change it so today now I would say yeah if you have a boyfriend or a spouse who just teases you and does not take you seriously with this then it's it's not going to change

Adeel [11:44]: Yeah, I mean, there's probably many people who might be listening and are maybe in a situation. So it's, you know, we're not saying leave, but we're just saying, you know, don't feel guilty about thinking that way.

Cleo [11:58]: Yeah, yeah, exactly. Yeah.

Adeel [12:01]: And yeah, we hit upon a good point just a few seconds ago. You know, there's a lot of younger kids who are thinking about, oh, my God, it's... Everyone's talking about triggers, the number of triggers multiplying. Is this going to be a disaster? But like you said, as you get older, you become more of an adult. You become more assertive of your own freedom. And so, yeah, having respect for yourself and having some freedom definitely makes things better. Even while at the same time, the number of triggers is probably exploding. Yeah, that's true. so yeah why don't we uh so did it start to affect the you know background um when you're in school did it start to affect your your your grades and whatnot or or how your kind of um your your experience of school um not that i can remember um no i think school was pretty normal i have to say i wasn't um

Cleo [13:03]: I didn't like school. I didn't really go a lot. That's not that I should have. No, I was a teeny, teeny. So I had other things on my mind than going to school. So it was funny. It never really affected me in that. sense also with my my first boyfriend who now if you look back to it um he was i don't know how someone with misophonia could ever be with someone like that um so that's why i think that really the the whole teenage years also with with school until i graduated all this time um sure i didn't like like eating noises and um people Yeah, with pens in the hands, that was always a thing. But other than that, I had the feeling that everything was pretty normal in the sense that it can be normal. It's actually, yeah, it got worse after school and then work and adult life. That was actually more, yeah, where it got worse. So school never really, nothing really affected me there with misophonia.

Adeel [14:19]: Yeah, that seems to be not unusual that people are able to... Obviously, they notice it starts around a young age. Usually not as young as yours. That's kind of interesting. But yeah, around adulthood, just as you actually get more freedom, the number of triggers gets really bad. And so how did you start to then how did you start to cope with it around that point? Obviously, you're getting more and more annoyed and agitated. Were some of the kind of your coping mechanisms of choice other than being able to talk to your mom?

Cleo [14:58]: Yeah, I have to say that I was always very, very happy about that. That there was someone who actually understood it. The best coping mechanism really is background music. If it's dinners, like in a family home or somewhere, it took me a while until I could actually tell people to please put music on in the background. But that makes a big difference. It's still not nice to sit at a table with certain family members and eat with them. I'm never going to like it. But music in the background does help much better than sitting there in silence. And there are always people or family members who are a bit more than others that are a bit more louder and don't really understand that I have a problem with it.

Adeel [15:55]: Did you grow up in a large family or was it the extended family?

Cleo [16:02]: Large family in the sense that it was a patchwork family. So my mom and dad split when I was maybe two or three years old. so then i had the uh i grew up with my mom uh she then had a new husband they had a another child and on the other hand my dad um also had a new wife they got to have two children so big family but not all together it was all good split so um on the side with my uh with my mama was all fine because she before i could even feel something was wrong or something I dislike something she would already say stop this or to my stepdad you've got to be more quiet or because she had the same thing I think that was also something that that helped before I could get really really angry and get this frustration inside. There was someone actually who had the same feeling but got it a split second before I did and was then the person who said something. So that always helped.

Adeel [17:07]: Yeah. I mean, misophones, we often have similar triggers, but sometimes they're not. Yeah, that's true. Did you guys have similar triggers? And then she was able to kind of be your advanced warning?

Cleo [17:22]: Yeah, we have actually similar things. There were certain things that I couldn't really understand until now, like things with, if you, yeah, how do you explain it? Like the packaging of spaghetti or rice or something, it makes this click.

Adeel [17:41]: Wrappers.

Cleo [17:42]: Yeah, wrappers. I never really cared about that. And then like a year or two ago, I finally understood why she hated it because it started with me too. That I didn't like that. But other than that, we were actually always pretty, pretty similar. It was always a lot to do with eating and a lot to do with also fidgeting, like two quick hand movements or picking your nails or fingernails or

Adeel [18:11]: also your your lips it was always something that um i think that we couldn't control um yeah so yeah it sounds like a lot of visuals uh visual stuff for you guys yeah for your mom did that start um did that did those kind of start early to the visuals or was did that start to happen later

Cleo [18:36]: I think that started a bit later. I think the noises were, the sounds were there first.

Adeel [18:41]: That seems to be common, yeah.

Cleo [18:42]: Yeah, and then it got a bit... out of hand, everything. It's just been a bit more on every side.

Adeel [18:52]: And by getting out of hand, is that just more stuff at home started triggering? Or is it like you're going out of the world and the, I don't know, public transportation and work, like sounds from everywhere?

Cleo [19:08]: Yeah, sounds from everywhere. It was a weird feeling to notice that actual normal sounds in the world could could trigger you as much i mean there are also certain um series that i can't watch because even though the plot sounds great um they have i think it was this german series on on netflix that every time there was something exciting about to happen they put in music that was way way too loud And there was just not a good balance about the whole thing. So I couldn't even finish the first episode. So there are also things like that that I just can't get over with.

Adeel [19:55]: I just can't watch or certain music if it's too high pitched I skip the song I don't even give it a second chance I just said that today I just said that earlier today I listen to some weird music from like 60s, 50s and 60s where they didn't necessarily mix things very well they would have an instrument that they just didn't mix well and it's you know, just the frequencies would just really stick out. Yeah.

Cleo [20:28]: Yeah. Such a shame. Yeah.

Adeel [20:31]: Did, did we, what are some of the ways that you, that you've kind of maybe expressed your, your, your misophony other than just, you know, being able to turn off Netflix out in the world? Have you, you know, you probably have the glare and have you ever told anybody to, you know, shut the.

Cleo [20:55]: The better I know the people, the more I can... The more likely you are to hurt them. Yeah, I can actually shout at them. Yeah, for the outside normal world, I always have headphones in. I always listen to podcasts. I'm always very excited if I find a podcast where I can actually feel joy listening to the people if they have a very nice sound, very nice voice. um because that's just the worst thing finding a podcast that sounds just like serious sounds interesting but that you give it a try and then it's uh you feel nope that's it's not gonna work for me i can't listen to that so yeah normally i listen to more podcasts than than music because i have just a feeling it's a bit more um i can control it better and um yeah and and it took a while for me to tell people now that i have a name to it it got a bit better but also there are some people in my family that i haven't told yet just because i pretty sure I know how the reaction is going to be and it's not going to be positive it's going to be like oh yeah you and your little problems and oh yeah and the noises just making fun of it so my boyfriend I have to say is pretty cool with it I mean as cool as you can be having a girlfriend who says stop it all the time did you ever know anybody before you that had it maybe no or no And then he met me and also my mom. Right. Yeah.

Adeel [22:37]: He's like, I'm trapped.

Cleo [22:38]: He's like, yeah, this is great.

Adeel [22:42]: After impressing two nusophones. That's not an easy task. No. Did your mom used to maybe express it? Did she tell family members? Or I'm curious if she or if she. Well, I guess I'll talk to her in the future episode. Maybe we'll save it for that. I'm just curious if you maybe... Maybe if she kind of influenced you or you influenced her in being able to speak up more about this.

Cleo [23:14]: No. We're both very introvert people. She can cope a bit better with people than I can. I also have anxiety disorder and little things like that. But... yeah no she always had difficulties telling people also because of their reaction she only told like really told some of her close friends now that there's a word for it that is called misophonia that it's not just um her being trying to be special Because also people then say, if you tell them, yeah, I have a problem with noises and I don't like this and that, and then they start coming, oh yeah, I have the same thing. And yeah, I also don't like noises. Or you're like, ah, it's not the same. If you would know what I feel.

Adeel [24:08]: It's exhausting. Yeah.

Cleo [24:10]: Yeah. Because you don't want to be the person who pretends, yeah, but I'm better because my noise is much worse for me than it is for you because you don't want to sound proud because you can't be proud of it. But you also want the other person to understand it is different. Yeah.

Adeel [24:29]: Yeah. These are some of the many reasons why it's almost not worth telling people.

Cleo [24:33]: Yeah. Yeah, exactly. Yeah. And if you know, it's just... Oh, yeah. Sorry.

Adeel [24:39]: Yeah. No, no. Well, I was going to say, you'd mentioned that you have some other exciting whatnot. I'm curious if you've talked to professionals at all about any kind of mental health stuff and whether they've heard of misophonia.

Cleo [24:57]: Yeah, I did. And no, they haven't heard about misophonia.

Adeel [25:03]: Classic, classic answer. Unfortunately.

Cleo [25:06]: Yeah, my mom has more research on the whole topic than my, what do you call them, new neurologist had.

Adeel [25:17]: Right.

Cleo [25:18]: But he, the neurologist I actually went to, he's a very, very intelligent and sweet guy. He's like in his... maybe late 50s mid 50s and he's open to new things so it's not like he shrugged it off and said no yeah i don't know if that's a thing he was actually pretty interested um so i always like to get that let me say that the vibe from doctors that actually yeah listen and and say this could be a thing and i know what you're saying and i'm going to read into it and not just like shrug it off but um no i haven't um until now i haven't met anyone who really knows about misophonia being a being a real actual thing yeah and she yeah other than uh speaking of you know people knowing um and knowing that if people have missed the point other than your mom have you met anyone else who has it uh out in hamburg or wherever um no i have the feeling that a friend of mine has it um but i haven't actually really talked to to her in in depth with but i'm pretty sure because i can um a lot of things that she does uh says um i see myself in her so i have the feeling that that there's something there and she just um doesn't know that there's a word for it but also do you really want to be the person who tells someone else you know i know i know what problem you have it's also a bit weird so yeah yes i know i know i know the name of your disorder let's talk about yeah ice cream or something yeah yeah so um yeah i'm not quite sure i'm gonna handle that but i'm pretty i'm pretty sure that she has it too but other than that no my my sister's a bit um has it a little bit but not like my mom and i do um yeah yeah but did you what did

Adeel [27:28]: when he started living with two misophones?

Cleo [27:34]: He was pretty okay as far as I can remember because my mom, yeah, just from the beginning told him what he's allowed to do and what not to do. It's like there's just certain things that, I mean, to this day, it drives her crazy. I mean, they split up too at some point after a couple of years. And when he drinks tea, he's someone who, like, how do you say it? His nostrils go very big. um and yeah she she's just thinking about that she gets like goosebumps as she said it's one of the worst things ever to to always have to see that but other than that with like the noises that he or the expressions that he could actually control he was pretty good and um yeah didn't didn't do that well that's good yeah yeah yeah

Adeel [28:32]: a bit of a relief yeah um okay so um and then are you are you living with your partner right now or you guys still uh no honestly i don't know how that's supposed to happen yeah because it's come up in some uh some interviews recently where you know somebody's on just about to move in with somebody or they're you know maybe living together but you know separate rooms yeah so or thinking about like new you know new construction old construction yeah there's all these factors that kind of don't you sometimes will not think about and then until it's too late kind of thing so yeah anyways i'm curious sounds like you have maybe thought about or considered the possibility of like what how would that work

Cleo [29:23]: Yeah, we have audits. It's more me having to think about it, about the perfect situation kind of thing. Yeah, I live, we do have two different flats. My flat's a bit bigger than his, so the... um plan that i made in my head would be he could move to my place but i would need to have some kind of plan b because i also work from from home So I'm here all the time, every day. And he's a nurse, so he's home quite a lot. Sometimes he's gone for the night, which is nice because then I can sleep alone again. So there's always these factors. But I couldn't just now... move in together i would need to have a bit more space or um a little office somewhere with a double bed or a single bed to just in case it gets really really bad that i just know in my head maybe i'm never going to use it but just that i know okay i have decompressions yeah i have a place that i can go and hide and come back in 24 hours and then i'm fine again because not having that, just thinking about it, I get anxiety. It's like, no, this is not going to happen. It's not going to work.

Adeel [30:49]: So, yeah, we'll see how that... Yeah, and you hit upon an interesting thing about, you know, a lot of the tools that we use to get over this is obviously headphones and whatnot, but sometimes it's just the knowing that there is a way out.

Cleo [31:03]: Yeah, yeah.

Adeel [31:05]: It's enough to let your brain deal with a situation. Do you find that happen a lot? Like... You know, you can bring your headphones out or you can have that extra room, but you don't necessarily have to use it. Yeah. Do you notice that that helps? Just that reduction in stress or anxiety in your case, maybe?

Cleo [31:25]: um it does yeah but um only till uh to a certain point yeah of course it would be perfect if that would that would solve it all just knowing there's an extra room no but it does it um it does help yeah but yeah it's it's it's difficult um if it if it will be a um a second room in the same apartment, I also have the feeling it wouldn't be as good as if you have somewhere. I mean, it's wishful thinking. Everything costs money, and I know that. But having a little room somewhere else is... Because I just like being alone as well. I like sleeping alone. I like waking up alone. So all of these things that no one really wants in a... yeah in a relationship where you you're happy to move in together and wake up together and do nice things 24 7 it's I just like being alone more than anything else I have a little dog she's Like my little companion, she's everywhere where I am and that's enough. So yeah, my boyfriend really had to get used to that. It took him a while, but he was always kind about it. He knew it's not his fault. And it's not that I dislike him and I don't want to be with him. It's just I dislike everyone and I don't want to be with anyone. So it's not like a personal... vendetta against him is just the way um yeah but he's pretty cool with it

Adeel [33:12]: So he does he try hard not to trigger you or is it more like, you know, he'll trigger you, but then he'll be respectful and stop it. I'm curious. Both. Yeah. OK. Yeah.

Cleo [33:27]: Yeah. There are certain things that I can I could like picking his his lips. I can tell him to stop it. And 30 seconds later, he does it again because I don't think he acknowledges that he does it.

Adeel [33:41]: So that's the thing where we always... Acknowledges as in he doesn't realize when he's doing it or he doesn't want to acknowledge. I mean, it sounds like he's respectful, so I'm sure he would try to intentionally do it.

Cleo [33:56]: Yeah, no, I really have the feeling that there are certain things like that and also the picking at the sides of your fingernails, that they're just... like it's automatic he doesn't really know that he's doing it because with other things like he doesn't start eating before the television is on or there's some kind of noise or When we're in the car together and I turn off the motor and also the radio then goes off, then before he starts doing anything where he knows I don't like noises, he waits till I either put the radio back on or open the car door that there's some kind of noise and it's not just a quiet vacuum. So he is pretty cool about that, yeah.

Adeel [34:45]: That's fantastic. It's fantastic. Yeah. We need him to, uh, teach a course maybe or do a YouTube channel. Very cool. Um, and, and when, so when you do get triggered, um, you know, people have their kind of like, uh, their, you know, uh, recovery time is what some people call it. Uh, do you, um, you know, well around him, I'm sure it's, uh, it's you know knowing somebody who's trying to trying to at least you know not intentionally hurting you for lack of a better word um you find us a better recovery time than like a random random person in the world or at a restaurant kind of thing like uh i guess yeah i'm trying to see how do you how do you recover the best do you just leave the situation or close your eyes um just throw your headphones on at all times? Are there certain things that maybe help your recovery time?

Cleo [35:46]: Yeah.

Adeel [35:47]: It's kind of a mumbling, rambling question.

Cleo [35:50]: No, no, no. I know what you're trying to say. I have to say that with the people I'm close to, especially my boyfriend, I have to say I can be a real... I said a nice little bitch.

Adeel [36:06]: I was going to say I was thinking bitch, but I'll let you finish that sentence. I don't want to be that kind of interviewer.

Cleo [36:13]: Yeah, no, but yeah, you thought correctly. Yeah. If it's something that he does that triggers me, I get... angry very very quickly and um i don't okay so you do get straight up angry yeah okay got it it's not like it's not like a it's not a reminder number 363 it's more like no it's more of a i i told you a thousand times it's uh you know just stop you you know what i just don't like what i can't cope with just uh to be honest yeah i mean yeah yeah honest yeah so um yeah if it's if it's people that i don't know um i also get this um like the the anger inside like this that i feel that it's building up inside my chest but i can control it better like if it's in a supermarket and i hear i see sometimes it's also people just uh walking on the street eating ice cream in a very weird and disgusting way also these things that i just can't uh Then I just look away if it sounds, if I go shopping or something or go get food, I actually, I always have my earphones in, so I don't really hear the surroundings, which also helps. Yeah, and if it's people that I'm very close to, like my best friend, I can also tell her to, because she doesn't live in Hamburg, now she lives in Russia, so we're on the phone a lot. And if she wants to eat or... tries to eat i um hear that immediately because i just have good ears on the phone oh yeah yeah yeah and then there's like a split second where she says oh yeah she forgot and then i told her yes it's uh fine either you want to eat or you want to you know talk to me but you can't do both at the same time so um yeah she's normally um like that all my life so she's pretty she's pretty cool with it too sometimes she tends to forget but yeah right yeah all these all these regular people do yeah at some point yeah does she know the name misophonia now or does she it's just the thing yeah it's it's clear no she knows she knows that it's name i told about she wasn't as impressed as as i was but because maybe i don't yeah it doesn't really affect her as much as it does uh affect me But yeah, no, I told her as soon as my mom told me, she was one of the first people I told her that there's a name for it now and that it actually is a kind of disorder and people are trying to figure out ways to cope with it or if there's maybe some kind of therapy that it's not just me being who I don't like sounds. So yeah, there are also a lot of...

Adeel [39:02]: Yeah, are there any interesting, you know, therapies? Obviously, since you found out I had a term, like many of us, you've probably done a bunch of research or, you know, slowly read about it over the years. Is there anything interesting you've kind of picked up that's maybe helped you? I know it's just something really new. It's hard to explain.

Cleo [39:25]: Yeah, it's difficult.

Adeel [39:26]: It's really early days, but...

Cleo [39:29]: I know what really helped my mom and me when we first heard about, or when she first heard about the term is funny that, that it actually is a thing. She, she's someone, if she finds something interesting, she just says herself, she Googles the shit out of it. Like she's just like day and night. She just Googles and tries to find more things. And, She's very into it and into research. And she then came across this, I don't know, this convention kind of thing. And I think it was in America too, where loads of misophonia people meet. And then there's some guest speakers and some doctors. I think it had a real name, but I can't remember. I don't remember where it was. But they, on their homepage, they said, this in the state um we have this this misophonia convention and people who stay in the hotel uh they did like a little checklist and said um in every hotel room we also provide two single beds for the misophonia person and his or her spouse which made us laugh because we loved that and um also it said that no no eating certain things no drinking um in in the areas where all the people are together because it triggers a lot. So there were these points that we just went through which kind of made us smile because those are the things that are important for us. that no one understands. And then reading that there's this convention and people trying to learn about misophonia and all these misophonia people, I don't know how you say it, actually come to one spot and they talk to each other and try to find out what the triggers is, how it started, if there's something they can do about it, that just really fascinated us. That really helped to know that there's actually like a pretty large group out there everywhere. that suffer from misophonia, that it's really not just one doctor in, I don't know, somewhere in America saying, yes, misophonia is a thing, but now I'm believing him, that it's actually more and more people figuring out that it is a problem and it is a disorder. And that's just, that helps.

Adeel [41:53]: Yeah, I think you're actually, I think, yeah, I mean, I think you're talking about the Misophonia Association Convention, which I've been to the last two. Actually, this series was just finished yesterday. It was a virtual one. Oh, okay. But this actual podcast was inspired by um the last year's convention that i went to in in denver where yeah i got to i mean it was the second one i'd went gone to uh i got to kind of meet up again catch up with people i'd met at the first one yeah and just uh just kind of that inner that kind of one-on-one uh relationships with people yeah um is what inspired this podcast it's you know more than just kind of us ranting about you know our triggers just kind of having those conversations is very powerful. Yeah. And so that's what this was about, but you're right. It's, um, the, the only pick, um, I'm not a member of the, I mean, I'm, I'm a member, but I'm not on the organizing committee, but, uh, they um they always pick like a certain the embassy suites hotels i think because they have uh like two doors they have the out like yeah yeah exactly and then they have an internal door too to get before you get to your actual bed so it's like perfect um and then they also for breakfast and actually all their meals they like the first time i went the breakfast was like

Cleo [43:15]: um you know hard-boiled eggs um you know muffins all soft foods yeah yeah i love that there's nothing that can crunch there was is just yeah yeah it's so thoughtful it's just that people acknowledge it it helps to um just serve soft things for breakfast which actually is just so nice

Adeel [43:36]: yeah yeah my mom yeah if you guys can if you guys can can make it uh or it's uh i highly yeah i highly recommend it i mean obviously rope it into like a vacation or whatever but yeah yeah it's just surreal to be sitting in a room with a bunch of people where you don't have to you don't really have to tell them everything they understand yeah it's like you're kind of halfway you can kind of you're halfway to being their friends already without even saying anything yeah yeah because you kind of know you're in all these um pivotal moments in your life they probably felt the same thing it's kind of surreal yeah yeah it must be really cool And I've talked to a bunch of people in Europe. I'm hoping that the community kind of grows in Europe because there seems to be, obviously, you know, we always complain in America where there's not enough awareness. But, you know, I've talked to people in Czech Republic, Greece, Russia, where it's even less.

Cleo [44:34]: Yeah, yeah.

Adeel [44:35]: It's even more difficult to talk about it. How would you say the, you don't know a lot of people in Germany, I guess, who have it, but would you say, do you know much about like, is it written about a lot, maybe in the press at all, misophonia or these kinds of issues?

Cleo [44:55]: Not really. I've listened to this big magazine that also has a German magazine who also has a podcast now. It's called Zeit. And someone actually sent that to me. They had a little half an episode on their podcast. It was about misophonia. And I got really excited that it was actually a German podcast who talked about it. And then I started listening to it and they interviewed a girl. She was like, I think, in her early 20s. who suffered from misophonia and said she did all this research that there's also in Germany, there was this one university who also tried to do some studies, but she had a very, very know how you say but i couldn't really listen to her because she had a something in her voice that just drove me crazy and i also have the feeling that they didn't have a good microphone which really pissed me off to be honest because it's it's such a you talk about this topic with noise sensitivity and then you don't get a good microphone so people who actually suffer from this don't want to listen to it because it just doesn't sound good so i couldn't um i actually didn't listen to it uh to the end because at some point just had to give up it just made me too angry but that was actually the first german um german speaking german language thing about misophonia that i heard of um I don't remember which city it was in Germany that actually at some university wanted to do some studies. But other than that, it's more English articles that I find on the internet, like America or sometimes from the UK, but mostly American things.

Adeel [46:48]: I'm planning to do transcripts for all these episodes of this podcast. Like you, I don't know if people could be annoyed with somebody's voice or apprehensive about listening to it. Listening to podcasts in general, which I totally understand. So yeah, I want new transcripts. But then I could also pump it into Google Translate and spit out like a German version of all the episodes. So it might be interesting to kind of get awareness in other countries if someone is searching and Because you can Google, this is how ignorant I am, I should know, but you can Google it with, you know, in Germany, in German and get, you know, German results, right? Yeah, yeah. If I have a translated version, then it might show up and hopefully help somebody.

Cleo [47:40]: Yeah, yeah. Even if it's just one or two people, it just helps so much to know that there's, Yeah, like a community to also know that it is a real thing and it's not just, yeah, just a thing in your head that you're not crazy, that it actually is a disorder as you call it.

Adeel [48:05]: Well, yeah, so I guess we're getting close to the top of the hour again, but I'm curious, is there anything you want to tell people who might be listening about your experience or maybe wanting to reach somebody in Germany? Yeah, does anything you want to tell the listeners? And obviously the listeners will hear more about you when your mom gets on the show. But yeah, any kind of last words you want to share?

Cleo [48:42]: In general, even though with age it gets worse, like the triggers get worse or the sounds get worse, the misophonia itself it does actually get easier to cope with it i don't know if that makes sense yeah it's a common theme that's come up yeah it's it's even though it's more you just at some point you just know who you are and and what sounds and what you don't like what you do like and find your own little coping mechanisms and that actually just makes life easier even if you're scared that there are always going to be new triggers which i'm pretty sure that i'm not at the end of it that there's going to come a couple of more things right um but yeah just just yeah knowing that there's things like the um listening to podcasts listening to music having things having headphones in your ears or having um Yeah, a spouse who actually tries to understand what you're going through, they'll never fully understand, but they'll try.

Adeel [49:47]: Never.

Cleo [49:47]: Yeah.

Adeel [49:48]: They would never.

Cleo [49:49]: No.

Adeel [49:50]: That's an interesting point you just said about how as you get older, you know yourself better. Do you feel like misophonia has kind of helped you just helped you be closer to yourself because you've had to um you've had to deal with these issues for so long do you think it's like affected your personality you said you're an introvert yeah i feel like there's any i mean i am many of us um but i'm yeah i'm curious if it's kind of uh um you know that being inside yourself so much has kind of helped you uh get to know yourself better and and then as you become an adult maybe you make it easier to to kind of stand up for yourself more

Cleo [50:37]: um yeah i think i think that it helps to yeah stand stand up for yourself more that um i've i've always liked to be alone so i've always been like in in my head all the time but um for like going into the outside world also with this um being at now for example at my boyfriend's um parents for dinner that at some point I told him, you know, as soon as we come in, you have to do me a favor and just put it on the radio in the background because I don't want to be the person to tell your parents. And at some point I thought, why actually not? Because I'm not ashamed anymore. Well, maybe it's just to some extent for some people. So that's not fully true. But yeah, to just... slowly learn to say you know i need the music in the background what's so bad about it it's i mean it's nothing it's not like i'm putting heavy metal on or something it's uh just a little bit of music which would be fine too yeah which also would be fine sure um yeah so um yeah standing up for myself that actually that that helped even it takes a little time but yeah just um just being okay with the person you are. Everyone has some kind of, let's call it weirdness to themselves. If it's not within a very social or too social or introvert or extrovert, everyone has something. So, yeah, misophonia is a thing and people should just learn to, like outsiders should learn to, yeah, see that it's a thing and yeah take it seriously did you end up telling your boyfriend's parents um i didn't tell them that what it's called i told him that i'm sensitive to to noises and eating especially things like that um yeah as soon as i don't get the reaction that i hope i would get i stopped talking about it so i just tell them then the the basics and if it's not like oh how interesting and oh we didn't know and then um i don't need to go into into it further yeah so i'm happy that they know but um i don't need to really discuss it with them any any further i think we all understand yeah totally um

Adeel [53:24]: Well, cool. Cleo, yeah, I want to say, yeah, it's been great talking. Yeah, once again, is there anything else you want to share or, well, I'm sure we'll have more good stuff with your mom.

Cleo [53:38]: Yeah, I just want to say I'm very excited what she's going to say.

Adeel [53:43]: So am I. Yeah. That's really interesting. Well, great. Yeah, thanks again, Cleo.

Cleo [53:49]: Yeah, thanks for having me.

Adeel [53:51]: Thank you, Cleo. And thanks for connecting me with your mother as well. This was a great little two-parter with a lot of insights people can absorb. Remember, anyone can be on the podcast too, just by going to the Be A Guest link on the website, Leave me any feedback and connect with me on Instagram or Facebook at Misophonia Podcast or Twitter at Misophonia Show. As always, I want to remind folks to go to Apple Podcasts, leave a five-star review. You don't even have to write anything. Music, as always, is by Moby. And until next week and next year, wishing you peace and quiet.