Rosie - Navigating Life with Misophonia: Rosie's Resilience
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 8, Episode 2. My name is Adeel Ahmad, and I have Misophonia. This week I'm talking to Rosie, who's based in Newcastle, England, and heard about the podcast from Newcastle-based Misophonia researcher Paris Sash, who is also a guest on the podcast. She first noticed it as a teenager with the sound of her mom's chewing, and that later expanded to include other people and sounds. She struggled with guilt and shame and felt misunderstood by her family. Rosie found support from her understanding sister and her partner, who create spaces where she feels safe. We talk about coping methods, using headphones, avoiding triggers, and seeking understanding from people around her. She reflects on the connection between misophonia and dysregulation of emotions, as well as the impact of her upbringing on her condition. And we also talk about the importance of self-care and self-compassion in managing misophonia. After the show, let me know what you think. You can reach out by email at hellomisophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please head over and leave a quick rating or review wherever you listen to this show. It really helps drive us up in the algorithms, which really helps other people find the podcast if they're looking for Misophonia. A few of my other usual announcements. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash Misophonia podcast. This episode is also sponsored by the personal journaling app that I developed called Basil, B-A-S-A-L. Bazel 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 and modalities. It's available on iOS and Android. Check the show notes or go to hellobazel.com. All right, now here's my conversation with Rosie. Rosie, welcome to the podcast. Great to have you here.
Rosie [2:03]: Hello, it's great to be here.
Adeel [2:06]: So, yeah, do you want to tell us kind of roughly where you are and a little bit about what you do there?
Rosie [2:13]: Yeah, so I am in the northeast of England. That is what you meant, isn't it? Yes, yeah. Literally where I am, not where I'm at in my misogyny journey. I am in the northeast of England in Newcastle, which is right up near Scotland. And I currently work as a cook part-time and I also work in marketing part-time. So I kind of do lots of bits and bobs. I work out a lot in the community, the local community, mainly around hospitality, small businesses, things like that. And recently, well, I had a baby last year, which prompted me to actually think more about where I'm at with Miss Ponyo. So, yeah, I'm kind of settling into a family life with a small, you know, with a toddler now. Yeah.
Adeel [3:09]: Yeah. And when you first, I think when you first reached out, you said you've had misophonia since you were a teen. I mean, obviously sounds like there's a lot of stuff going on now, but yeah, maybe we can kind of go back to kind of like early days for you. Yeah, of course.
Rosie [3:25]: Yeah, so I noticed it when, like, I remember it was a very specific moment. I was on holiday with my mother and my sister. We used to go on holiday, the three of us, quite a lot. My mother and father were split up and I used to spend most of my time at my mother's house. And we used to travel mainly to places like Greece and Turkey, which are very hot countries. And I used to find generally that I was in a bad mood because of that to begin with. And I remember going on this trip, like high up into the Greek mountains somewhere on a really hot bus. And I was in a really bad mood. And we were sitting outside eating some lunch. And I just noticed that the way that my mom was eating, was making me so angry that I wanted to hurt her. And then I couldn't understand why I felt that way. And I felt so trapped because I was so hot. That's what I remember the most. I was so hot. So I felt suffocated because there was this noise next to me and then there was the heat. It was like sensory overload. And I remember looking down and crying because I was so, I really just was in so much distress and so much pain. And I think I remember my mom kind of saying, you know, oh, what's wrong with you? But because I had a bit of a reputation for being quite a moody teenager anyway, it just, you know, it was kind of just seen as, oh, yeah, that's Rosie, you know, she's just been moody. And then I think it was the rest of the holiday, I noticed it was just whenever my mum was eating, it was a really specific thing. It was the way she was chewing and it was the... pace of how she was cheering and then that was when I first realised it and then from there the focus was very much around my mother for I would say throughout my teenage years it didn't it didn't go into other people until a bit later but it was a real focus around my mother and when I got back from the from that holiday i found that i couldn't sit with her i couldn't even sit in the passenger seat in the car so i started sitting in the back which created quite a you know a bit distance between me and my mom because she felt like i hated her and i just couldn't you know just could not bring myself because i didn't understand it you know you don't understand it then you don't understand when you're a teenager it takes years to understand what's actually happening and I just thought, all I know is that I have to be away from certain noise and the sight of certain movement as well, which I think was microphonia, maybe. Yeah, right.
Adeel [6:13]: Misikinitia. Oh, is that what it's pronounced? Yeah.
Rosie [6:19]: So there was like the two things sort of going on for me. So I just had to be out of her sight as much as possible. She had to be out of my sight as much as possible. So I actually became very reclusive as a teenager. As a result, I stayed in my room a lot. I had loads of things that I really loved to do anyway in my room, like my PlayStation and CDs and stuff like that. And I just needed to just be in this bubble. And I just didn't, I became more inward because I was kind of scared to go downstairs and hear noises. It was a very small house as well. So, yeah, that was the beginning of it.
Adeel [6:56]: And then you got into hospitality at some point, so obviously quite a journey.
Rosie [7:01]: Yeah, this is a really strange one, actually, because I didn't... I didn't get actually that triggered by... I've worked in restaurants since I was 15. And weirdly, it's just that that was never a huge trigger for me, I think, because I was far away enough from a lot of people. I don't know. And it's quite fleeting when you're waitressing. You're kind of back and forth. So waitressing wasn't... hospitality wasn't too much of a big deal it was just more sort of being around too many people I guess in one go that would kind of I guess working in hospitality exhausted me to a point that it made having misophonia harder. But no, my triggers are very specific and come from other places.
Adeel [7:53]: It's strange. Specific people, like your mom, obviously.
Rosie [7:56]: Yeah, so it's like the biggest... Yeah, I would say it was only my mom for about two, three years. It was just her. And it was kind of like the... She actually is a really polite eater. This is another thing that confused me. She's so polite that it's actually so annoying because she kind of chews so slowly. And it makes her jaw do this click. It kind of goes click, click, click, click. And it makes like... It's as though this fire like starts inside of me and I'm like, oh my God, I just have to get away from this. Just so horrible. And then... I noticed it kind of was to do with afterwards if your cat was clearing things in her mouth and it was just the whole... Yeah, yeah. Yeah, you know, just the whole thing. And then my mum started to notice how much it bothered me. And then it turned into, oh, that's what your dad is like. And so it runs in my family, which is something I haven't actually found out yet about other people with the condition. But my dad has it and my grandma, so his mother has it. But they would never admit that they have it. I've tried bringing up loads, but I was told when I was little that people just have bad manners. It's just other people in bad manners. And I remember thinking, even when I was a teenager, it can't just be that. Because I feel like I'm going to pass out from how overwhelmed and angry I feel from this. Surely that is not normal. But they... you know my mom and dad used to sit in separate rooms because my dad couldn't stand to be around her eating and really yeah so it was a really big i was brought up with like you know in my father so i just i was kind of used to it but it was kind of just seen as like a trait of like oh that's typically him so my mom did not take it in any way seriously mainly because it's hard to understand for someone who doesn't have it and b because she did not like my dad at the time so it was like it was like she was kind of putting that onto me there was a bit of transference there it was kind of like oh you're like him Yeah.
Adeel [10:11]: You said your mom's a polite eater. And it's interesting that your dad would go as far as having you be in a different room. Obviously, maybe he's picking up on the same sounds that you let him.
Rosie [10:20]: Yeah, we did. We have discussed it. It's only after I've had a few drinks, I've managed to get it out of him. And I mentioned the clicking jaw once. And he was like, the clicking jaw. It's that fucking clicking jaw. What is that clicking jaw? And I was like, no, I don't. It's just so annoying. So I don't know. There's something. yeah she's not allowed to eat it she's just I think it's the pace of how she eats I think that's what's important to me it's always about the sound per se as you can tell by the visual thing it's there's other factors involved psychologically yeah it's like a whole process yeah like my mom kind of eats every single thing off the plate as well so she'll kind of use the spoon to scrape every single do it lovely like for absolutely ages and i'm just it feels like i'm being tortured yeah yeah yeah so you were told at an early age uh even
Adeel [11:17]: even after your, well, yeah, at an early age to even after you knew what it was that it was, basically your dad told you it was bad manners and your grandma, right?
Rosie [11:28]: Yeah, so for many years I was taught, you know, because I think I mentioned to my dad, you know, like, it's obvious we both have this thing and he just would always put it down. No, no, it's just other people have really, really bad manners and we're just trying to manage that. So for a long time I was just thinking, okay, there's nothing... like wrong with me it's just that they're you know it's just the world and their bad manners um what about you you said you had a sister or a sibling right yeah i've got a sister um i was i've now got three sisters but growing up i had one um who i lived with she is um the best person in my life in regards to having misophonia she's very understanding always has been
Adeel [12:14]: um very accommodating and she does trigger me sometimes but i find she triggers me less because she understands yeah so again i'm not sure if that's a sort of regular thing hey well if this is about if if this is about like um you know your your brain kind of miswarning you about some danger then if it's if it's ascribing less of a danger to your sister that makes sense that you'd be less triggered by her
Rosie [12:42]: yeah yeah it was because i would feel triggered by something but i wouldn't go into a panic because i know yeah i knew that i could i could ask it to stop and she would stop but as my teenage years went on and i became known to be this person who didn't you know like certain sounds and then got labeled noise police and that was always my name which is i'll take that name yeah noise police and um uh i noticed like this so at first it was the eating and then the thing that really developed quite heavily when i was about 15 or 16 and it's it's stuck with me it's still one of my biggest triggers it's just being able to hear a television from another room like it's just unbearable for me like i can't sit Like, I would rather sit outside in it and have lunch. I just would. I hate it. Like, if I can hear another neighbour's television, if I can hear the bass line to anything. And I lived in quite a small house and my mum had a boyfriend that she used to watch television with. And they would, you know, it would be something quite garish, like a game show quite loud. And my room was directly above and I used to... be in tears in my room because i'd be like i really hate it and i couldn't understand why because i'm like it's just a television and it's not actually about the volume it's about the it's like that right like muffled it made again it's like a closing in feeling i felt like i was being drowned almost like i can't escape this noise it's like out of my control and i remember going to ask about i went downstairs and said do you mind turning it down and they turned it down a little bit and then i went upstairs they turned it back up and then i went back down please can you turn it down oh you're just the noise police like you're just like your dad and so so then i started to become obsessed with having like my music and then they wouldn't understand because they'd be like well why have you put more noise on if it's quiet that you want and i was like i can't describe this it's just i can't have that noise i just can't have that constant like it just drives me crazy um yeah so that was yeah that became um that was like my biggest trigger nested there the eating um and then from there i started to just dread going anywhere like going on holiday my mom loves going away and she loves going on mini trips going on buses and coaches around the country anywhere and going on a coach to me is like my idea of hell because you're just on you're in a small space with about i don't know 40 people you have no idea what they're going to do So I used to back out of lots of things to which my mom would, you know, she just, it was just like, oh, well, you're not Rosie. She's just grumpy and doesn't like to be involved in anything. But what was so sad is I really did. And I loved, I loved going to see things and I've always had a thirst for knowledge and, you know, wanted to travel, but I could not cope with thinking about getting onto a coach for eight hours to go to London or something to see something. And it was, She actually still makes me feel guilty about these things. You know, she'll be like, I used to try and take you everywhere when you were little. But because she made it so clear to me from a young age that it's not that it's wrong, it's just not acknowledged. It's just simply not a thing. It's more, it's just a rosy quirk. It's not... And even though I've...
Adeel [16:02]: explained it over and over now um which you know i'll get to it's still just completely ignored really so that that whole guilt and shame that you know we all get and you know at some point um you're still getting that even after like explaining it to her and probably yeah yeah i've tried a few times and um
Rosie [16:26]: I think in 2021 I had some therapy related to other things that I'd gone on in my life and you know just trying to I think like most people in the COVID-19 lockdown everyone kind of re-evaluated their life and their existence and I realized that there was actually quite a lot of things affecting like how my happiness in life. And I was trying to work out, you know, because I find it quite hard to stick to one thing. I can't seem to just have, I can stick to a job, but I find it hard to stay engaged in one thing. So I tend to work better when I've got lots of different things.
Adeel [17:06]: I've been re-evaluating that too, yeah.
Rosie [17:07]: So I tend to work better when I've got quite a few creative projects on the go. And I just thought, right, I think it's time to really get some answers on how I function as a human. And I went into therapy. I explained quite a lot of things, but then mainly thought I'm going to bring up misophonia because I've spent years now looking it up. My therapist just had never heard of it. I was surprised, but she just had no idea what I was talking about. And instead, she has referred me to be assessed for ADHD and autism, which I'm still on the list for that because it takes a long time to get that on the NHS in the UK now. It's very overstretched. So it's been three years and I'm still waiting. But it was funny that when I told her it was to do with noises, she immediately said, oh, this sounds like autism.
Adeel [18:00]: Yeah, it sounds like it, but yeah, and obviously there's a lot of overlap, but yeah, it's not necessarily autism as far as I know.
Rosie [18:08]: yeah well so even though i felt she was a good therapist it felt i still felt very alone in the misophonia it just still felt like you know it's yeah i mean you know this is why you're doing these this podcast yeah yeah it's just trying to bring awareness to it because what i find is like people who don't have it seem to think that you're trying to you're trying to make their life bad so there's almost like this what all this is how i perceive it so sometimes my mom and my stepdad who i mean my stepdad's even worse he's like makes me feel so awful about it you know he'll do things on purpose so he'll chew louder and he'll for example when i've told him i was pregnant he went oh how are you going to cope uh with the night because the baby's going to eat and it's going to suck you know milk and and i just i didn't even respond because i thought i'm not even just i'm not even going to dignify that like it's just ridiculous because that's not how it works but it's uh well that's even if it did that's not what you say No, no. So, yeah, I find that even now I'm 33 and I've tried to tell my mum a few times, but her and my stepdad just think it's... know they just think it's an absolute they just think it's me being um obnoxious and awkward that's just and it doesn't matter so i've kind of come to peace with that now i just think yeah i can't convince the entire world to understand me all i can really do is pinpoint the people that do make me feel okay yeah and just give them more energy and make sure that I'm spending more time with those people. It's just so hard to cope, if not. So my sister, like I was saying before, she's incredible. She really is just incredible with it all. And she has to remind her husband sometimes. She'll be like, oh, you know, you're chewing chewing gum. Just if you don't mind taking it out because it's just, it's easier for Rosie and we'll all have a nice day. She kind of makes it a really light hearted thing which I find really helpful. That's what I've always struggled with. How do you communicate with people without sounding like a dick? How do you say I really don't want you to make quite a normal noise because it will ruin my entire life and I'll be in a bad mood and it will ruin this experience. How do you say that? I've tried to be really direct with people. I'm still learning basically.
Adeel [20:43]: Yeah, honestly, so am I. I think part of it is trying to address the defensiveness that other people feel when you're telling them this because they suddenly feel like you're attacking them for... You know, the usual counter argument is, oh, I'm just, you know, doing a normal human thing. Yeah, we know. It's almost as if we don't know that. Like, we do know that. We do know how stupid this sounds. We do know all that. That's kind of why we're mentioning it. Yes, right. Yes. Embarrassment is on top of the guilt and the shame. Yes.
Rosie [21:22]: Absolutely. And I always try and say, well, do you think I want to ask you this? It's humiliating. Like, it's clearly for a reason. But it's hard to... I think I heard on another one of your podcasts someone saying it's a real reflection of someone's character, how they react to it. to you so I've got a friend a Chilean friend who's she's now gone back to Chile she was here for a few months and she's fabulous and we were in the car together one day I was helping her do quite a lot of bits and bobs and running her around and she got into the car one day and she was chewing and it's the first time I realized I was the first time I noticed that she was chewing chewing gum which is my number one hit and I just thought oh my god I cannot be I can't drive I can't drive and just And I just had this real moment where I just thought, right, I think I can trust her with this. You just have to go for it. And I just said, oh, look, before we get going, would you mind just taking the chewing gum out? I know it sounds weird. I just really hate the noise of it. And she was like, oh, okay, no problem. She just took it out. And that was it. No questions asked. But she is like just, it wasn't even, you know, there was no defense, but that is her character. She's, you know, she's quite comfortable with, honesty I guess so because I think I think it's been discussed in other ones but they're all cultural crossovers where I find that I've actually found that asking like European so like you know more like because the UK is no longer European so more like Spanish and French I find it easier to ask people from those countries because there's less awkwardness in those countries that people are generally quite upfront but British people are you know very well known to be awkward we don't know how to ask what I want I've heard about the stiff upper lip or just kind of like yeah it's true and it's true it's completely true it's like it's everywhere I mean not every single person but generally our culture is to be to feel incredibly uncomfortable asking for what we want and also feeling incredibly comfortable when someone tells what they want so trying to manage having misophonia in the British culture is like just so awkward yeah So I've actually found it easier to be around people from other cultures when having misophonia.
Adeel [23:45]: It's interesting. I mean, maybe that's, well, I mean, there are, there's just so many people with misappointing and misappointing research happening in the UK. Maybe that's a reflection of that. And here in the United States, you know, there's such a pick yourself up by the bootstraps culture. Yeah. Even though we claim to be more aware of mental health, I think there's a subtext that no, you're actually supposed to just pull yourself up by the bootstraps and not make a big deal about it.
Rosie [24:10]: Yeah, just get on with it. Yeah, yeah. Suck it up, we say over here. I don't know.
Adeel [24:14]: yeah oh yeah look it up yep no exactly and it's like it's not as easy what were your so what you know if you're not you know other than backing out of situations and what were kind of your coping methods was it living in headphones or when you're not in your room or um
Rosie [24:33]: so when i wasn't in so if we're talking about my teenage years yeah let's start with that yeah yeah so i would i would avoid it would just be avoidance so it would just like you know i just simply would not do anything that expose me to certain towns, so I just wouldn't eat with the family. I wouldn't. And if I really had to, I mean, I think I just would sit further away. And I would have to face certain ways that certain movements weren't in my eye line. and i would just sit like maybe closer to my sister because it's again it was just my mom that i found so difficult with and then um as i got a bit older and started to use like our metro like our you know kind of subway type thing yeah um in the northeast i would get on there and uh um i would i would have to have headphones with me i'd panic if i didn't have headphones um but i also love music so it would be you know i would just kind of zone into into music and try and forget about it. But I've noticed that I'm finding transport in general harder as I get older to the point where I don't know if I could ever get... I'm still trying to manoeuvre this. I find it really hard to get on public transport, aeroplanes. I just... Because you really can't escape, at least when you're somewhere stationary, you can just walk out of the room and take five minutes. But... um yeah but my and as a as a now an adult um i'm very lucky to have a very understanding partner um which has really transformed the way that i view it because i feel validated now i think i've had i've had plenty of supportive partners but i know that they haven't quite understood it and it's kind of been like okay because After a while getting used to this person, I would then start to feel really irritated by how they eat, you know, and not really wanting to sit with them on a night time. So right now, the house that I live in with my partner, we've got two living rooms. We've moved into a house with two living rooms. Like we've made it so that it's got two living rooms for this reason. So I'm now sitting in my living room and he's sitting in his. But he is someone who needs to recharge alone a lot. So it works really well for us as a couple. So he's... He doesn't have misophonia, but he does really understand being really irritated by certain things. So right from the beginning, he understood it. And we just kind of clicked. And, you know, I'll come in some days and I'm just like, I'm in a terrible mood. There was someone shooting on the bus. I need to just go upstairs. And he'll be like, don't even worry about it. So I think for me, my coping mechanism now is being given the spaces where I feel safe.
Adeel [27:17]: Right.
Rosie [27:18]: Having the room to... you know someone actually giving me that space you know go and take five minutes um so that I don't you know fly completely fly off the handle and sometimes we get the bus um I do drive but occasionally we just get the bus into the city and that can be really difficult and my partner will just say put go on just put these on oh and let's think about this and he'll kind of distract me so I'm lucky that I've got that support from him but I'm still on the journey of I need to be able to manage this alone because there are times when I'm alone and with my baby and I'm totally triggered and then I'm like to the point where I can't look in the same direction as when my baby is because there's a person triggering me behind it and i'm like i'm having to ignore it because if not i'll just so i i'm it's just constantly a process learning process that's interesting yeah and how did you um mention it to your partner when you first met or i'm curious kind of how that conversation went yeah i think i did um we trying to think where it was a little bit of a blur but i think it i think i remember it being really early on because i think we've we went out on a date he was talking about how much he just gets generally irritated by people just just you know being around too many people and for like uh for too long and just how the effect it can have and then i think because he said that And he wasn't just one of these people that's like, oh, I just love, I love being, he just wasn't super positive, right? It made me feel comfortable that I could say. And I think I remember just being like, oh, well, if we're on that topic, like I really hate people making certain noises. And I just don't remember him ever being fazed by it. He was like, all right, yeah. Whereas other people I've told are like, okay. And then they'll be like, so can we not go to a restaurant or can we not do this? And I'm like, no. it's it's complicated and it's full of nuances it's it's so it's there's not like one size fits all with it it's like some days it's if i'm tired it's much worse and stressed and yeah again just to hear you around and feeling the energy in the room and if you feel like you're around people who don't support you just makes it a thousand times worse but um but yeah no i think i felt very comfortable mentioning it to him straight away um but that that was the first time in my life so that was when i was 30 31 yeah how did you when did you find out i had a name i think it was around um I seem to remember it being in my early 20s, I think.
Adeel [30:10]: That makes sense. Yeah, about 10 to 15 years ago.
Rosie [30:12]: 10 to 15 years ago, yeah. I think I saw an article, or I think I just Googled. I think I was trying so hard to understand it. Yeah. And then I came across the term, and then I remember messaging my dad and saying... i found out there's a name for that thing that we have and he was very dismissive about it really dismissive he was like but then it has become it's it's obviously circulating quite a lot now in really reputable reputable newspapers in this country and i think there's been quite a few articles about it in the newspaper that he reads or have noticed that recently he's been a You know, I try to tell my grandma who's like late 80s and she's definitely from the, you know, stiff upper lip culture. But she told me stories when I was little that I recognize now. She was struggling so much. She said that her granddad used to smoke a pipe and the way he used to tap the pipe and clean it out and smoke it. She said she used to go off to another room and cry and she couldn't understand why. I said, well, that's misophonia. And she was like, no, it's not. She calls it disease of the affluent. She thinks all these new things are like diseases for affluent.
Adeel [31:32]: First world problems. That's the old way of saying first world problems.
Rosie [31:36]: No, it's not. Wow, that's fascinating.
Adeel [31:40]: Yeah. What did your friends say when you were growing up? Did you mention it to anybody?
Rosie [31:46]: Yeah, I did. I have to say I've got a couple of friends, two or three friends from school that I'm still quite close to. who know all about it um my best friend is neurodivergent so she i think just really understands just stuff like this in general and she gets quite triggered by certain things but again i wouldn't say she's got misophonia but she's She does get quite triggered by certain noises and just, I don't know, general things. So she's always been understanding of it. And she kind of humoured it, but in the right way. So I've always felt comfortable with her. I've noticed that a lot of the friends I've made since being an adult, people I've met through work and all that kind of stuff, I haven't really mentioned it to because I'm so scared that... by mentioning it, they'll become awkward. Oh, we can't, you know, we can't do this. We can't do this. And I think because I sort of, I'm from a village and then I moved to this city. I mean, it's not a huge city or anything, but I kind of started a new life here and I kind of didn't want to bring this like... thing with me so i've kind of downplayed it since i've been in yukato and then it's it's it's just ended up you know coming through with some some close friends and they're like oh yeah sorry i forgot you don't you don't like the noise of this or you don't like the noise of that and then And then basically I just don't go into it too much because I just feel like the more I say about it, the more uncomfortable they will feel and I can't bear that. So, yeah, basically I only tell certain people. I don't feel comfortable telling everyone.
Adeel [33:31]: Yep, we'll have to kind of, you should have to make that calculation.
Rosie [33:35]: Yeah, and I just kind of, I do make plans for people depending on... how I think they'll be. So I've got a friend who does tend to chew sometimes, but I have asked her before and she always goes, oh, sorry, but then the next time I see her, she's chewing again. So I avoid going on public transport or anywhere where I'll be stuck with her. Yeah, it's such hard work.
Adeel [34:01]: It sounds like a lot of stuff has been going on, obviously. In your adulthood, you've got a partner, a child, you're trying to negotiate stuff. And you said you were a sternacy therapist about other stuff. I'm always curious, does your mom and stepfather know about other stuff going on in your life? And there is just...
Rosie [34:26]: is that more acceptable and then misophonia is just not or i'm curious kind of like actually come to think of it they don't tend to acknowledge any of it because i've had you know yeah i've had quite a lot of mental health struggles over the years and yeah mainly to do with um i have this i had this pattern until i kind of went to therapy and sorted it out but i had this pattern of getting involved in a situation, whether it be like a workplace or a boy, and everything would be okay, and then it would just go so... terribly wrong that i would have a huge meltdown and then you know would be out of action for like a few months and it would be a very dramatic thing and you know i've had to i've had to access crisis teams in mental health before through it and i had problems with drugs when i was about 19 18 19 20 which i do think part of that was to do with just wanting to be taken away from because you know you're just on such a different wavelength for a while I kind of hid behind drugs and then it kind of worked in bar scenes I hid behind drinking quite a lot and I do that I do feel there's been a bit of a link between my addictive behavior and my sort of inability to stabilise or monitor my moods. And I've had a lot of situations where I've typically had a huge meltdown and had to kind of re-evaluate my entire life and think about what I'm doing. And that went on all through my teenage years and then all through my 20s. And then it's only not been a thing since, you know, a couple of years ago, since having this therapy, which did really help me. And I told my family what was going on with me. I said, you know, I've had this therapy and we've done a timeline of my life. And it turns out, you know, I have been struggling and I'm going to try and work it out. Why can't I manage my emotions at certain times? Why can't it seem to stay on a certain level? Apart from my sister, it's just not acknowledged. I took my mum out for a drink for her birthday, I think maybe a couple of years ago. And after we'd had a few glasses of wine, I said to her, look, I've really been making a lot of effort to work out what's been going on with me. And I think it might be a mixture of my misophonia. I think I might have ADHD, which I do actually think I have ADHD. I've got a lot of the sort of characteristics of a person with ADHD. and I'm totally okay with that but it was just it's been like lovely to learn about it but and I tried I really tried to open myself up to my mom and tell her and she just she looked blank and then just said I think you were just really naughty and that was it And she said, you were a really horrible teenager. And it took all my strength because I've had this therapy now. Wow. It's just to say, okay, and just not. But the old me would have absolutely, you know, I would have created a scene, stormed off. But I just thought... Okay, well, at least I've tried. I've told them, I've been so open with them. I've said, you know, I think there's a few things going on here, but ultimately my parents, and I think a lot of people from the generation, kind of boomer generation, they see it as a reflection on their parents. They just don't want to acknowledge it. So I think my mom just doesn't, even when I said I've been in therapy about anything, I can see it in her eyes. She's like, oh, are you talking about me in therapy? it's just not a comfortable thing to discuss whereas my where's my sister anything i've told her she's just like okay great and she gets on board with it and she'll research it and so you know i even tell her i'm was coming on this podcast she went off she subscribed she's read up about it she's read up about you like it's that that's her love that's her caring for me Because she wants to understand what I'm seeing and what I'm going through. So I even said, look, it says on the website, you know, they're going to take out any noises that might be triggering. I feel seen. And she just thinks that's amazing. But she's the only person in my family. But I'm lucky to have that.
Adeel [38:43]: Do you think that your mom, maybe even going back to an early age, your mom is somehow... i don't know doesn't just doesn't want to feel guilty or something or or or admit that maybe she had something or think that she might have something to do with it i'm just curious if she's got
Rosie [39:03]: I think something I've really noticed about me and my mum, the difference in us, is I would say that I'm a very empathetic person. I've got a lot of empathy. And I've noticed that my mum doesn't. And whether that's her own thing, maybe, you know, maybe my sister speculated that she might be new diverging. She would never look into it, even if she was. We have noticed that she really, really can't put herself in other people's shoes. So I think, you know, I don't think she's not a bad person. She's a lovely person. But I've noticed that kind of anything that I discuss generally about other people and how they've struggled, she just, it's very much dismissed. Just kind of like, well, my life's been harder. I don't know. She's a bit of a victim. She's kind of got victim mentality. And I think... I don't know. But she didn't have a good, you know, it's a whole other story, but she didn't have the best upbringing or the best childhood, and she wasn't made to feel safe in her childhood. So I think that's been passed down to me. So I used to feel really angry at my mum for a lot of this, but I don't now because I know that she's struggling as well.
Adeel [40:13]: That's interesting because, yeah, there's a lot of, you know, there's the idea of epigenetics and how... some things do get passed down not genetically in the dna but the experiences of previous generations can can come through and if your mom you know was dealing with those experiences through her own like dysregulation maybe this is something these are things that you were probably witnessing at a very young age pre-verbal age yeah yeah and actually
Rosie [40:43]: growing up my mom couldn't uh yeah she wasn't good at um managing her emotions i think that probably has um like what's the word kind of fans the flames of my misophonia because my yeah my mom used to quite regularly break down very easily so like you know if something went wrong um she would cry or have a take a hoof or you know i sort of remember going to go and shop and we went to a big massive shopping center with a big car park we couldn't find a space and then someone took the one space she was going to get and she was so upset that she like wound on the window and stuck her tongue out at this man and then drove us home and she was like i'm not having someone do that to me so i was kind of brought up around okay yeah i've always felt like i've had to kind of parent my parents really but um i just don't think i love it but i don't think she has the emotional capacity to um understand like what is going on that's interesting because there's something um i mean i mean it's maybe i don't know someone related but it's just this is one of the lessons i've had of misophonia and learning how it's so kind of in the same ballpark is um
Adeel [41:57]: dysregulation on many things. Having my own kids, especially now with a newish one who's still kind of like post-toddler, I'm trying extra hard now, knowing what I know about misophonia, to just not do those kind of garage kind of situations where I know there's some situations where I've probably done a variation of that in the past or would have done in the past and that's not something I want to kind of...
Rosie [42:25]: has um you know have anyone witness who might be impressionable so yeah yeah i mean yeah having children i mean it just yeah my perspective on life it's just totally changed and how i it's just shone a light on how i actually react to things and how i want to be and you know who i want to present myself to my child and um i have noticed that Yeah, I'm still really struggling to regulate my emotions a lot of the time. I'm definitely better at it. I have to do a lot of self-care. If I've had a week where I haven't eaten very well, I've drank a bit too much, it's worse. there's been a few times with my daughter I've felt really you know she's only made a couple of whingy noises and I've just thought oh my god I feel like I'm going to have a meltdown and then my partner's had to again luckily he recognises when I'm about to sort of fold and he'll just say don't worry I've got this go to another room just go upstairs take five so that's like what I have to do so I'm still trying to learn how to but how to regulate my emotions around my daughter but it is all i've ever known because yeah my mother was like that but my dad was like that even worse i would say he was he's mellowed with age now um but when i was little he was the most reactive person you know if something happened if he dropped something it was like oh my god Oh, you know, everything was so dramatic. Everything was, you know, you're coming from work and, you know, most people would read a room before they get, you know, oh, what's the vibe in this room? He would just walk into it and just emotionally dump straight away. I've had the worst day. So I think me and my sister are so close because we've kind of had to navigate having like children as parents in a way. It's been hard. But yeah, it's interesting. I had never thought of that being linked to miscarriage, the dysregulation of emotions by parents.
Adeel [44:30]: Hey, I didn't know that until really like a couple of years ago. And that's like, you know, halfway through doing this podcast. So it's not really talked about that much, but it's something I'm trying to, I don't know. I don't mean to pry into people's, you know, backgrounds, but it's just such a common pattern that I think it needs to be investigated more. And I will say one, I did not want to forget just letting you know that, you know, it's usually... usually your own kids do not trigger you like maybe you know it um yeah there's obviously exceptions but like try please don't uh yeah unless unless it does happen but please don't worry about like um don't worry too much about like your own child no when i've already noticed i've already i'm like oh if anything i find her eating really really cute like the more the louder she is the more i'm like
Rosie [45:21]: It's weird. It doesn't seem to trigger me at all.
Adeel [45:23]: I think it's the whole threat thing, you know, if your brain is thinking that these sounds or visuals are usually threats, somehow your brain luckily is smart enough to know that your child is not going to come and attack you.
Rosie [45:36]: I think what, like, my biggest worries about being a parent going forward with misophonia is we've never been on holiday before as a family.
Adeel [45:45]: Right.
Rosie [45:46]: and you know i just again it just gets harder for me traveling as i get older and it's such a shame because i love it but the last time i went away was last year when i was pregnant and me and my partner flew to lisbon and the plane i mean i just had to sit i had to literally like almost be in the fetal position with my hands over my ears, like an eye mask on. It was just horrible. And luckily the flight to Portugal, I think it's about two or three hours or something, but it was awful. And then we had to get on a big coach trip from... Faro to Lisbon, which took about five hours. And a woman sat behind me and ate rice cakes the whole way. And, oh, my God, it just... It was horrible. And I tried to move seats, and the bus driver was like, you can't move seats, you're not allowed. And I was like, you don't have to move seats. And I was pregnant as well, so my hormones were just, like, everywhere. And then now that I've had the baby, I'm like, I can't go on like that if I have a child. Because that's... That's not... i can't act like an irrational person because i'm so worried that i'll traumatize her and she'll get resentment that i have because i resent my dad's misophonia when i was little because i do think the way he handled a lot of it was terrible because it was all about how it was other people's fault not his and i resent that and that's kind of been his way of thinking about lots of things in general and you know a lot of my mental health issues have been kind of disregarded by him not that he doesn't think i have them but they've kind of been disregarded because i think he doesn't want to feel that he is in any way played a part in what's going on with me but anyway i'm sort of going off no these are important i was going to ask also uh if you know i don't know how much you ended up talking to that therapist about misphonia but if if the conversation ever went to this like trying to
Adeel [47:44]: investigate the past to see if it had anything to do with misophonia. I guess, did your... Well, I guess maybe it sounds like you didn't really talk to the therapist much about it beyond referrals, but did it ever come up?
Rosie [48:01]: What, the misophonia?
Adeel [48:02]: Yeah, kind of your past and all the dysregulation stuff.
Rosie [48:05]: Yeah, so she was great in the way that... She was a great therapist. She really changed my life. She just hadn't heard of misophonia, but it didn't mean she... didn't understand but what she thought was really important to do for me was to do this like really thorough timeline of my life and that had never happened before and it wasn't until we did this timeline where you know it just unraveled so many things i mean i've had there before and but nothing like work or hit like like this particular therapist did because I think it was just so thorough and what she did was actually realize lots of ways in which my parents had played a role whereas my whole life I've always just thought it's me I'm naughty I'm you know as well as noise police I was also given like a danger I was called problem child after the film in the 90s and I was known and And it was like, yeah, I was always known as that person. So I think for years I carried around this thing that everything's my fault. And she actually started to realize that a lot of things that were happening, there was a lot of family turmoil at the time that I went into therapy. She started to get me to try and look at my parents' behavior. And I hadn't done it to that extent before. And she kind of recognized that there was quite a bit of scapegoating going on and, you know, because I'm the emotionally volatile one in the family, it's quite easy to pin lots of things on me. And she recognised a lot of this stuff. So it was more like, it wasn't just about misophonia, but that triggered a bigger conversation about me not feeling safe as a child, me not feeling heard. And I've tried to broach these subjects with my mum and my dad separately. I mean, they will not, in their eyes, it's like, it's all on me. It's all my fault. I've had to accept it. It's heartbreaking, but it's, again, it's more of a reflection of them. I'm trying to be a better person. I'm trying to learn more about myself. But no, that was as far as the therapist kind of, it's all she could do. I remember saying that, you know, I'm going to write this down. I'm going to research what misophonia is because this will help me going forward. And then our therapy had ended by the time. you know it would be interesting when i do have my adhd and autism um you know the way they assess you like it'll be interesting to see how misophonia links in any of it but or how they think i don't know it's yeah
Adeel [50:30]: No, you said a lot there. I think, I mean, I get what you're saying. I'm glad that, I mean, I think that's a, at least for me, it's been an eye-opening for me to be able to connect to the past and see how Miss Funny might be related to it, but also how past has kind of, you know, led to other behaviors and emotional outbursts that I would not have probably even thought about until, you know, unless I was, you know, doing all this research into misophonia. So I try to take that as a positive lesson. I mean, that's what I think the misophony is. It's, yes, it's, oh, right, we don't want it. But I feel like it's your body telling you something, whether it's, like, correct all the time or not. But it's, I think it's trying to tell you in good faith something.
Rosie [51:22]: yeah i yeah i know what you mean it's like i feel like i'm only now after like yeah years of trying to read about it and and learn about it and connect with other people that there's an element of there being a superpower in it it's weird like this kind of like because i feel like there's kind of a heightened sense of spirituality and empathy in in and i'm trying to i'm really trying to be kind to myself in that way. And after so many years of seeing it as this horrible, you know, I'm this horrible person, noise police, you know, and trying to kind of flip it in a way.
Adeel [52:06]: Obviously, we're not trying to say that it's a superpower and we need to keep it. It's not actually a superpower. Exactly. But it's not as easy as just calling it a defect.
Rosie [52:22]: No, it's very complicated.
Adeel [52:24]: Yes, it's very complicated.
Rosie [52:25]: it's very complicated and it's like hard to know and you know people we're out in the early stages of like the research with it and it's like where does it where does it fit like i don't you know i don't um yeah it's just it's it's very complicated and i'm i'm kind of curious as to how it's going to evolve you know individually as i get older i'm always curious about that because i do find it's getting that it's getting harder for me but easier to understand oh yeah yeah yeah no it's harder my triggers on how they get harder every year i'm finding them harder to tolerate but then i'm I'm finding them easier to dissect. And instead of it just being, you know, teenage, hormonal, like, blah, like, I'm just going to smash this because I don't understand how I feel. It's now like, I just feel, I find myself not recruiting, but I find myself just wanting a quieter existence generally.
Adeel [53:27]: Yeah. And not to get too philosophical, but I just like to think out loud. And I'm almost like, because I'm into the self-care and also maybe the inner child soothing kind of therapies that are out there. And just, you know, obviously I have time to think about the, why does it get worse as you get older? But if it's somehow, as you get older, you're kind of getting more distance chronologically from that inner child, if that's part of it, where you're not really... maybe that inner child feels more I don't know distant and alone that that dichotomy is causing some I don't know your body is telling you to pay attention to itself more and kind of like try to come full circle and somehow repair and heal yourself the inner child is feeling more distant you mean as you get older yeah somehow i know i know i'm getting a little too spiritual philosophical here but it's it's like there is there was some kind of break that happened over a few years or something and as you're kind of like yeah that that I don't know, that inner child wants to be heard. And it's like, as you're getting older, maybe it's feeling like it's, that opportunity is getting lost. And it's just, you know, screaming.
Rosie [54:41]: Yeah, okay. Yeah, I get you, yeah. i love going into the civil society side of things isn't it i i actually trained sometimes it makes me cringe but i just like to just say stuff out loud just to kind of like because no one else is really looking into this stuff or not enough people so no i know totally i mean i i literally say to myself so i i say i talked to my initials i'll be like well well done rosie like because it'll be something just little that's really really helped me about day and i'll be like well done and i'll be free But I was training to be a psychotherapist in 2018. I put it all on a halt while I figured out other things because I actually found it quite intense. But I think that was probably what was pushing me as well to discover, well, learn more about misophonia. But that's when I became really aware of my inner child and all that kind of stuff. And yeah, I do feel like as I get older, I feel more protective of my inner child.
Adeel [55:43]: Yeah.
Rosie [55:44]: I just feel so... Yeah. Yeah.
Adeel [55:50]: No, it's... I didn't even know the term existed until a couple years ago. That's how lame I am. But now I'm just obsessed with it. I think it's super important to think about and soothe and... Yeah. Yeah. I just think it has a lot to do with misophonia. The one thing I was going to say is you mentioned research. There is research. However, I'm involved in monitoring some of it. What worries me is the modern trend in psychology is more about treating the symptom, purely the symptom, and not really digging deep. I'm afraid that it might
Rosie [56:37]: take longer to get to you know to really study the stuff that we're talking about because there's such a focus in the world on the on the very top level service level symptoms yeah yeah and sort of quick fix yeah sort of quick fix and yeah i mean i don't know i think it's quite similar in america but in the uk i mean we're just all on antidepressants now yeah yeah and i mean i i've been on and off antidepressants for years and i i I actively said no to them so many times when I was referred to a doctor. And that was before even thinking that I might need to go to therapy. It was like, just take this. And then I've kind of found a bit of a balance now where I take a low dosage, or I did take low dosage to sort of manage in feelings that were too intense. And then it kind of allowed me to explore other things. I think there's a balance to be had. I think fundamentally it is about getting to the root and really understanding what your journey has been and how you've learned how to be in this world and how you've kind of had to navigate that as you get older.
Adeel [58:02]: Yeah, there's a lot there. There's a lot to go in there, yeah. There's a lot there. But yeah, I mean, yeah, Rosie, I mean, you know, yeah, we're coming, yeah, we're coming up about an hour here. This is super, hopefully we covered all the stuff in your notes.
Rosie [58:19]: Yeah, I think I did. And if we didn't, it's because I just spiral all the time.
Adeel [58:24]: Those are the conditions I love. If it's not going to be you, it would be me, which I probably did at various points.
Rosie [58:30]: I'll start thinking about something else halfway through a point and then realise that I'm like, ah, which point am I trying to make? That was something I was a bit worried about before coming on and then I just thought, well, it's a gift.
Adeel [58:42]: No, I encourage that now because, you know, doing these conversations, there's all these different layers and dimensions, which I didn't even know existed when I started doing this podcast. And I find those fascinating because like I said, not enough people are studying them. So we got to talk about them.
Rosie [58:56]: yeah well it's weird the link and how i got to this to find this podcast was just that something had come up on instagram and then um about misophonia and i thought oh i'm gonna read the comments here because it'll be interesting to see who actually and of course 90 95 of comments were like This is ridiculous. This isn't a thing. And one girl, I forgot her name. I should really credit her. But she said, no, it's a real thing. I'm studying it. And I'm studying at Newcastle University. She's doing it as part of her PhD. And then I messaged her directly and said, oh, my God, I'm in the same city as you. I didn't know there was other people. And she then directed me to you, and I was just like, ah, what a lovely little link that was.
Adeel [59:39]: Yeah, I think you're talking about Paris, because Paris was on recently. It's just funny, because when you said you were in Newcastle, I was like, oh, I've got to text Paris now to mention that somebody else is from Newcastle. But it sounds like you've already connected.
Rosie [59:51]: Yeah, she was like the main point of connection.
Adeel [59:54]: That's awesome.
Rosie [59:55]: Yeah, she was like, you've got to go on this podcast. And I also said that if you needed any sort of guinea pig or anything that you put. Yeah.
Adeel [60:04]: Well, cool, Rosie. Yeah, this has been great. I don't know if you have anything else you want to share, but yeah, it's been great to have you on and hear your story. It's going to help a lot of people.
Rosie [60:16]: Yes, thank you. No, it's been helpful to talk about it. It's always, it's always, It's always lovely to share it, although it can be hard at times. It can be sad. But it's like just to know that there's other people, because for so many years, I really thought it was only me and maybe like my dad. But it's like lovely to feel seen and heard. So thank you.
Adeel [60:41]: Thank you again, Rosie. Wonderful. Wonderful talking to you. 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 helloatmissiphoneypodcast.com or go to the website, missiphoneypodcast.com. It's even easier to send a message on Instagram at Misophonia Podcast. Follow there or Facebook at Misophonia Podcast. And on Twitter or X, it's Misophonia Show. Support the show by visiting the Patreon at patreon.com slash Misophonia Podcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [61:59]: you