Lizzie - Navigating Misophonia Amid London's Lockdown

S2 E4 - 5/20/2020
In this episode, the guest Lizzie from London shares her experiences with misophonia, emphasizing the challenges of living in downtown London during lockdown. She discusses her intricate relationship with misophonia, highlighting her discovery of the condition through social media and the subsequent realization that certain sounds trigger a fight-or-flight response in her, leading to anger issues. Lizzie elaborates on the difficulty of distinguishing between simple annoyance and actual misophonia triggers, noting the expansion of her trigger list over time. Despite her love for food and restaurants, she finds herself frequently in conflict with her enjoyment due to environmental triggers. Interestingly, Lizzie also explores the role of her family, particularly her father's light-hearted approach to her condition and her mother's proximity to triggering sounds, providing a nuanced view of how misophonia affects interpersonal dynamics. Lastly, she offers insight into her coping strategies, including the use of a specially curated Spotify playlist and experimenting with ASMR, while stressing the trial-and-error nature of finding solace from triggers.
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Transcript

Adeel [0:01]: Welcome to the Misophonia podcast. This is episode four of season two. My name is Adeel Ahmad, and I have Misophonia. This week I've got another conversation with someone in Europe. Lizzie is in London. We talk about living in lockdown in downtown London, trying to work and relax at home while dealing with neighbours and housemates. We also talk about some of her family members who seem to have miso and her dad who seems to find it all a little amusing. Liz mentions a Spotify playlist in our chat that she's created, and I've linked to it in the show notes. Definitely check it out. It's her Misophonia playlist. I want to also take a moment to mention that the Misophonia convention will be on in October, and it'll actually be online this year. You should follow the Misophonia Association on social media for the latest announcements. They're still getting things finalized. but it'll be October 8th and there'll be a registration info link and whatnot coming up to get access to the live sessions. I'll have links in the show notes for that too. Now onto this week's conversation, just a warning that there is some talk of triggers, no sounds. All right, here's my conversation with Lizzie. Welcome Elizabeth. Welcome to the podcast.

Lizzie [1:19]: Hi, thank you Adeel. Thank you for having me.

Adeel [1:21]: No, of course. Um, so, um, yeah, so I actually, yeah, I guess I usually like to start off with, you know, where are you, where are you, where are you located and kind of what you do?

Lizzie [1:32]: So I am located in London, England, um, actually in Wimbledon specifically where you may have heard about the tennis here. Um, but yeah, I am on lockdown in London, um, at the moment and, uh, I do graphic design normally, but I am currently on furlough, which is the UK government's way of getting people that aren't able to work supported at the moment. So I'm kind of temporarily not employed.

Adeel [2:09]: Yeah, they use that term here too.

Lizzie [2:11]: Yeah.

Adeel [2:12]: usually i'm a graphic designer cool yeah yeah and so when you uh i think when you originally way back when booked the slot you did write a note about how you i don't think you know anyone around the or the uk or london that has misophonia or or um it's maybe it's not such a big thing and kind of you wanted to connect to a wider community or just talk about your experiences there

Lizzie [2:37]: Yeah, definitely. I mean, it's hard actually because there's not so much, I guess, press over here about misophonia. When I kind of think that maybe someone I come across has it and I go, oh, I think you might actually have what's called misophonia. They kind of look at me blankly and they're like, no, like I'm okay. So like even kind of on a level like where I think someone

Adeel [3:07]: else may have it they're not even aware of what the hell i'm talking about a lot of the time so right i don't really know anyone yeah and i think you reference like you know the kind of part of the culture over there is to kind of i guess be proud or not uh

Lizzie [3:26]: yeah yeah yeah i think i put in my original message something about you know the kind of british stoicism and you know biting your tongue you know if something upsets you or annoys you or whatever and i think a little bit of that has kind of fed into the fact that maybe people that have it don't realize because they they just want to you know keep their mouth shut and not be the person that's moaning because it's kind of seen a bit uncouth in the uk to you know to moan even though we moan all the time we're always moaning about the weather and everything but there's only certain things you know light-hearted things that are kind of acceptable to moan about but the rest you know if you're struggling with things that perhaps are on a deeper level it's it's coming around You know, this is 2020. People are starting to talk about mental health and well-being. But on a subject that's really undiscovered in the UK at the moment and really kind of underexplored, people just don't understand. When I'm trying to express myself in terms of, no, this isn't just an annoyance. This isn't me just moaning. This is something that's really affecting my mental health.

Adeel [4:46]: Right. Ironically, some of the most interesting research is happening in the UK these days. And so what made you kind of, what made it kind of cross the barrier for you from like, this is probably just annoyance to like, oh, I found out this is a real thing. Like, how did you find out it had a name and whatnot?

Lizzie [5:04]: So, I mean, I know I say that there's not been much press, but, you know, one day a couple of years ago now, I was scrolling through social media and I think there was literally a headline on this article that said, do you hate the sound of someone eating? And it was like a picture of someone biting into an apple. And just the picture alone, I kind of like shuddered. I was like, oh, that noise, I can hear it. And so I kind of opened the article, obviously, out of curiosity. And the whole article just opened up and was just like, yes, this is an actual... kind of condition that's being explored at the moment and to be honest with you when I first read it I just thought it was another you know fake news article clickbait kind of thing yeah yeah clickbaity thing so I didn't really think too much of it but then I saw you know because I clicked on that article I kept being fed more and more of those articles through social media as time went on so I kind of thought hang on maybe this is actually growing in kind of popularity and you know, people are actually starting to talk about this seriously. So, yeah.

Adeel [6:19]: Great. And so, so, and so what was your kind of, what was your situation at the time? Like what were your kind of triggers and like how was your misophonia at a, at a kind of a bad state at that point?

Lizzie [6:32]: Not really. I mean, it's really hard. So obviously I've kind of listened to some of the other people you've talked to and interviewed on the podcast and, you know, everyone's got their origin story, you know, shall we say. Yeah, and I kind of can't really pinpoint a moment where I kind of thought this is an issue. I think by finding out about misophonia, it almost had the opposite effect. So I didn't know that I had an issue until I then kind of read that I'm not actually normal in... hating these sounds you know it's not that common to hate these sounds as in you know you probably have dysphonia yeah so I kind of thought oh well hang on a minute you know I thought I thought these kind of sounds really grated on a lot of people but obviously not it's you know a little bit unique to me so I kind of discovered that I had it at the same time as finding out what it was

Adeel [7:43]: Right, yeah, I mean, it definitely annoys people. Some of these sounds obviously annoy people at a certain point, but then there's that, when you know you get that fight or flight sensation, then it's a whole other level.

Lizzie [7:53]: Yeah, I think the difficulty for me in kind of figuring out that I had it was because I kind of, when I was younger, I definitely felt I was a slightly, well, every teenager has their moments, you know, I did feel I was a slightly more like on the slightly more aggressive end of the spectrum, like a kid and as a teenager. And I thought that that was just, you know, an anger management issue that I had. I didn't think it was anything to do with being triggered by certain things. And since discovering misophonia, I kind of have now been more mindful of what actually makes me go into fight or flight and it is just those, you know, those certain sounds that are my triggers that really most of the time are the root cause of my anger issues.

Adeel [8:50]: In general, like most of your anger issues stem from particular sounds that you're triggered to.

Lizzie [8:57]: Yeah, it seems to kind of always lead back to, you know, the original catalyst for my anger being that it might be that You know, I've heard a trigger sound and then I end up being in a, you know, in a foul mood about it, not realizing that that's what's caused my anger. And then I go into a situation where I'm putting that anger on someone else and then it causes about nothing to do with the sound. You know, just because it's made me angry, I then continue to kind of go into a situation with it. with that anger.

Adeel [9:35]: Right, your brain's in a particularly kind of ready position.

Lizzie [9:40]: Yeah.

Adeel [9:41]: And have they been the same triggers going back to, you know, as far as back you can remember, or have they kind of blossomed into... They've really blossomed.

Lizzie [9:51]: They have really blossomed, yeah. So I kind of... I kind of took some time the other day knowing that I had this coming up to really write out a list of all my triggers and really try and figure out, you know, what are the worst for me. And honestly, I could have gone on for pages.

Adeel [10:12]: Okay, that long.

Lizzie [10:13]: Like, yeah, I kind of, like a line per, you know, trigger on a lined piece of like A4, you know, there was, like I turned over the page. So like, I kind of, I don't know if sometimes maybe I confuse trigger sounds with sounds that actually other people also find annoying and it's just an annoyance. You know, maybe there's a cutoff that I haven't discovered yet where it's kind of like that barrier between what puts me in fight or flight and what just actually annoys me but I think is also a trigger. I'm kind of still struggling to see where that line is at the moment because if I were to put all of what I think are my triggers at the moment on the spectrum, I can't find that line yet, I don't think. Yeah, I doubt that. What is annoying and what is actually a trigger.

Adeel [11:10]: Yeah, I doubt that it's clear buckets like that. And you're right, there's probably a lot that are definite fight or flight and then the rest kind of are higher on the spectrum and...

Lizzie [11:21]: Yeah, I mean, I think for me, in terms of my main triggers, I love food and I love restaurants and I love going out and, you know, I always put myself in environments where I find myself having to deal with other people eating.

Adeel [11:39]: Yeah.

Lizzie [11:40]: And so I'm exposing myself quite a lot to certain triggers versus, you know, perhaps other triggers that could equally annoy me but I'm just not in that environment as much as I am in say a restaurant or a bar where you're hearing other people eating or you know hitting their plates with their cutlery and scraping and right and you know I'm sorry if that's kind of trickering anyone just the description of that but yeah I think because I'm always in those kind of environments it's really palpable um distracting a lot of the time like I can I can pick up on people eating from the entire opposite end of the restaurant I'm in it can be the only thing I can hear yeah I'll be mid conversation and then I can't suddenly lock on to someone on the other side of the room who's hitting their plate or you know scraping the cutlery or scraping on their teeth or you know talking loudly whilst eating which is creating mouth sounds that you know it's all usually around eating but in my main issues i think absolutely yeah i mean i do lock into uh sounds as well um yeah if i hear something somewhere else and uh yeah it just kind of shuts your brain down to anything else yeah yeah but the the weirdest thing is is i was actually because it's been quite sunny here in the uk believe it or not recently it doesn't rain all the time But I was in my garden, kind of, you know, getting the fresh air that I can get in my garden being on lockdown. But I sat there, you know, reading a book, enjoying the peace, listening to the birds tweeting. And then I suddenly hear, I don't know how many, you know, neighbours away, but I could hear in the distance, someone clearly having a barbecue and then and then beginning to eat the barbecue and i was like as if i can hear that i like i can't believe that i can't just sit here in peace and enjoy the bird's free thing i'm now having to listen to my neighbor who is could be 10 like 10 doors away you know 10 houses away um that's ruining you know my enjoyment of that really pleasant day.

Adeel [14:14]: And you pretty much, and I'm trying to continue reading that book, I'm assuming, is impossible.

Lizzie [14:18]: Oh yeah, it didn't happen. It didn't happen. The headphones went in, you know, and ironically, I think I then put on the sounds of birds tweeting into... The Audubon Society of the UK, yeah.

Adeel [14:31]: Yeah, I was going to ask you, what do you do at that point? What do you reach for? What's your armour? Yeah, headphones is the easy one.

Lizzie [14:39]: Yeah, so... So the one article actually that the BBC have actually put out there, I think maybe about six months ago now about misophonia interviewed a woman, I can't remember her name, but she was kind of talking about suffering from misophonia and her coping strategies. And one of the things that she said she has is a pre compiled I guess and pre-downloaded Spotify playlist that is just a list of songs that can it doesn't matter what song comes on in that playlist it's just an immediate shuffle don't care what song it is that comes on because i know that i trust all of these songs to be good and not have triggers and you have to start immediately not have like a slower yeah and they start immediately and you know some of them are like quite loud aggressive you know heavy metal or whatever yeah quickly throw some sounds in my ears kind of playlist that's an amazing idea like some of them are calming but like a lot of them are kind of like immediate start like you say it's just like quick quick quick like go go go headphones in bluetooth connect play play play on Spotify and obviously we've got the the tube here in London and you know I'll be on a commute and I'll see someone start to open you know a packed lunch and there's crisps and chewing gum about to go in their mouth and so I kind of scramble quickly I'm like right get the playlist out get the headphones on close your eyes because like even even just seeing someone chewing gum sat opposite me on the tube is enough. I don't have to hear it. So like sometimes I do have to really just close my eyes and put my headphones in. And that's usually my kind of go-to if I'm not already listening to something or watching Netflix or listening to a podcast or something like that. Cause I'm, I'm normally attached to my headphones.

Adeel [16:49]: Yep. What are your headphones of choice by the way?

Lizzie [16:51]: Uh, they are Beats X. Okay.

Adeel [16:54]: Are those noise canceling or just really good, uh, Are they in-ear or over-ear? They're in-ear.

Lizzie [17:02]: I actually have the noise-cancelling over-ear proper hefty Beats Audio headphones, but these ones are the Beats X, which are Bluetooth and you can literally have them dangling around your neck like a necklace.

Adeel [17:16]: I prefer those.

Lizzie [17:18]: They've got the magnetised earbuds. So yeah, those are Those are good, but they unfortunately don't actually block out as much noise as I'd like. Right, until you crank it up. Yeah, at night sometimes our neighbours can be so loud that even on full blast, I can still hear them. Even with my headphones as loud as they can go, I can still hear certain noises. I can hear my flatmate moving around. And again, that's another thing that unfortunately triggers me is kind of sounds that i don't know are gonna end so you know yes if i can if i hear if i hear my housemates stirring if i hear them suddenly leave their room i kind of start tensing up and i think okay now i've just got to listen for them to walk around their house and hope that, you know, they then go back in their room and, you know, go back to reading their book and stop.

Adeel [18:22]: Yeah, that's a good point. I've definitely felt that too, living in apartments is like not knowing what's going to happen next. Yeah.

Lizzie [18:30]: It's the not knowing what's going to happen or when it's going to stop and not having the control.

Adeel [18:34]: Right.

Lizzie [18:35]: That really, really kind of messes me up. If I know it's going to end, fine. You know, I could probably hold out bit like the lockdown really you know we could probably all happily deal with this if we knew there was an end point and when that was right but like yeah yeah but like if i if i know it's going to end in like a couple of minutes time i could probably grin and bear it for a couple of minutes but it's you know not knowing that it's going to stop or when it's going to stop and i've also realized especially through uh having annoying noisy neighbors that another one of my triggers is sounds that i can't make out so it's like really low really low level sounds that you know like a whisper where you can't understand what's being said or like you know a neighbor's tv where you can tell it's a tv but you can't can't hear the dialogue of the program they're watching or like it's not it's not clear enough to make it out so then you I feel like I can't anyway.

Adeel [19:40]: Yeah, it's like it's... Listen to it. It goes back to how this is some kind of a processing, brain processing disorder where it probably just gets exasperated if your brain is trying to process and can't. Yeah. So bizarre.

Lizzie [19:56]: Yeah, I mean, again... Yeah, sorry. I was just going to use another example. Again, I was in my garden, you know, whilst it was sunny the other week and... Our neighbour, I couldn't see what they were doing because, you know, there was a fence between us. But our neighbour kept making this repetitive banging noise. And I thought, oh God, you know, I have no idea when this is going to stop. This is getting worse for me. You know, the sound was the same. It wasn't getting louder. It wasn't even that loud. The fact it was making me jump kind of made it worse. But, you know, I didn't know when it was going to end. And I actually just eventually stood up on the side of one of our flower beds to try and be able to peer over the fence and just be like, sorry, hey, excuse me, neighbor. Do you mind? Like, I tried to be as polite as possible, but I was just like, it sounds like, you know, you're slamming the door of your shed every time you're going in and out of it. Do you mind maybe, you know, just being a bit more gentle or like, I don't know, like prop the door open if you're going to be going in and out that often, blah, blah, blah. And I had a conversation with her and she's like, oh, no, I'm actually just doing weights. so it turns out she was she was dead lifting and then you know slamming like slamming the like thing back on the floor and every time she did that was every every rep she was slamming it and slamming it and i was like oh okay but weirdly as soon as i knew that that's what the noise was as soon as my brain could understand what was making the noise it made it more wearable

Adeel [21:38]: Yeah, I can see my brain doing the same thing.

Lizzie [21:41]: Yeah.

Adeel [21:41]: That makes total sense to me, probably not to no one else who's not listening, but yeah.

Lizzie [21:47]: Yeah, yeah. But obviously, like, mouth sounds and things like that and eating sounds and things like that, I understand fully where that sound is coming from and what is causing it. Oh, of course, yeah. It doesn't make it any more bearable.

Adeel [22:00]: Right. And so, yeah, so I guess right now you're saying, okay, this is all stuff around the house and you were talking a little bit about the tube. So before you were furloughed, what was your work environment like? Like you're a designer, I believe, a graphic designer, right?

Lizzie [22:16]: Yeah, a graphic designer.

Adeel [22:18]: So you were in an office working for a company. Was it like an open office? Mm-hmm.

Lizzie [22:24]: Yeah, open plan office, lots of people eating their lunch or breakfast even at their desks. There's modern people eating lunches at their desks like animals. Yeah, so I've actually fairly recently started the job I'm in now. So I started back in August, which to me still feels, you know, because time essentially stopped when we went into lockdown. I feel like it was still quite recently. But, yeah, I've been working from home now since probably the very first week of March. So I've not actually been in that environment for a while now, which has its benefits, obviously, as a misophone. But I, a lot of the time, unfortunately, end up being office DJ because I'm the one with the paid-for Spotify playlist, you know, yeah. no ads and so um you know and being the one creative person in the office i'm the one that can get away with playing music oh yeah you're the cool dj yes yeah oh yeah i've done that too like i i kind of i'm in control of the music in the office which is which is great and you know i'm glad i can you know do that for my colleagues and you know they put in requests and whatever too quiet too quiet and uh well yeah but the the thing is for me though sometimes is because i am playing music through a speaker to the wider audience if i was to then put my headphones in and you know play something to myself i just get funny looks and like i've not quite got to a point yet where i can like establish with everyone in the office that i have and actually if you see me with my headphones in, you know, like I'm not trying to block you out. Like I'm still approachable by all means. Like come over to me, chat to me. This isn't my way of, you know, being like I'm focusing, go away. It's just sometimes, you know, I can hear something. I'm not going to point fingers, but sometimes there are sounds that are happening that I can't deal with. that I have to plug in. And I've managed to explain that to my immediate team, but the wider office don't quite get that. So, you know, it's a new role. And I've kind of, I have struggled a little bit with kind of making connections with people in the office because they think I'm being standoffish and, you know, reserved and keeping to my corner. It doesn't help that I literally am in the corner. But yeah, it's kind of difficult. But unfortunately, you know, there are the eating sounds. But unfortunately, there was not so long into me starting that job, there was a moment where I had to actually turn around to my colleague and say, look, I am so sorry. But what you are doing right now is the equivalent of scratching your nails on a chalkboard. Would you mind stopping? And what my colleague was actually doing was filing her nails. And she's been doing it for like half an hour already by this point. And I kind of thought, I have grinned and bared it this whole half an hour. I really have to now say something if she's going to continue. And I tried to be so polite about it. And I just kind of got a real kind of, yeah, yeah, yeah, yeah. Like, you know, just I've got like one more nail. Like I'll stop in a minute. And I was like, oh, no. So I was just like, okay, I guess even though it's 11 a.m., I'm going to go have my lunch break now. So I kind of had to leave the office. Because I think I'd even forgotten my headphones that day or something. So like I... I was in real turmoil because obviously it would be a bit weird for me to just sit there with my hands over my ears. I sit opposite my boss as well, so for her to see me just sat there like a school kid with my hands over my ears, I couldn't have done that. So I just had to remove myself from the situation, which I'm finding myself having to do a lot, unfortunately.

Adeel [27:03]: Does your boss know now? Is this part of your immediate team that you've told?

Lizzie [27:07]: I told her. I think my immediate team's understanding of it varies person to person. I think some of them, they're really understanding. Whereas, you know, I've not really had the chance with others in the team to really explain it yet.

Adeel [27:31]: Oh, explain, yeah.

Lizzie [27:33]: Because we're quite a flexible, like working environment. So, you know, we're not always in as well, you know, on the same days of the week. And so, you know, I've not always had the chance to kind of explain it, but I have tried. And my colleagues that do know, they try their best to kind of be understanding and, You know, some people that sit closest to me whilst they, you know, still will eat their lunch at their desk. I do know that they try to, I can see them trying to not make a sound. But as hard as they try, bless them, they're still triggering me. I'm like, I really appreciate your effort. but you're still triggering me. I'm going to have to go have my lunch now, even though I'm not hungry yet.

Adeel [28:31]: So you said earlier that people might think you're being standoffish. Have you gotten that feedback directly from people?

Lizzie [28:40]: Yes, actually quite a lot.

Adeel [28:43]: Apart from Nail Filer, like from other people.

Lizzie [28:47]: Yeah, it's actually even kind of got to a level where even my current boss, but kind of previous bosses from previous roles have even brought it up.

Adeel [28:58]: in annual reviews and i've kind of just had to be so what do they say they say like uh you know you're people you know you need to suck it up or just kind of like you need to work on this or curious how that comes up in reviews because i'm sure others coming up in lots of people's reviews around the world so yeah it's more it's more of a um it's more of a kind of um you know

Lizzie [29:27]: be a team player well no not even that it's like you know you're a lovely hard worker but you know you took your time to really settle I think and you know like people are starting to now warm to you you know everyone's telling me how great they think you are but you know like clearly you kind of had some issues settling. That's kind of usually how it comes across. And like, they're trying to be so gentle about it. And I'm just kind of like, I'm like you don't even know the start of it I'm like I'm such a social open most of the time when I'm not seemingly moaning all the time because you know people think that it's like a boy who cried wolf as soon as I moan about one noise it's all noises and you know they get kind of bored of it but when I'm not moaning all the time I'm usually a pretty happy go lucky kind of person and pretty chilled out laid back and You know, so when I kind of get that feedback, I kind of think that's such a shame. Like, you know, clearly it's taken, you know, all this time for other people to see that because maybe, you know, I did kind of go straight into this new role. kind of almost immediately picking up all my triggers and who's probably going to be causing those triggers over time. And, you know, not pushing them away from me in any sense, but, you know, just blocking the world out through headphones, which I tried my hardest initially to not do. I kind of thought this is a new job. You can't just come in here, put your headphones in and, you know, not... Not get to know your colleagues and, you know, be on hand. Especially when your boss sits opposite you, you need to be, you know, essentially on call. You know, because she could just peer over, you know, the top of the desk quickly and be like, oh, do you mind doing this? Or let's have a quick chat and blah, blah, blah. And if I've got my headphones in on full blast, and especially as a graphic designer when I'm in full flow, you know, no one can get in touch with me unless they've literally waved their handed. So it has been a process to try and settle. It's the same with every new role. I've had quite a few jobs by now, and it is a process settling into new roles, figuring out almost people's timetables. If I know that my colleagues, most of them will usually have their lunch at midday, then I need to be prepared with my headphones or I need to be prepared to just go have my lunch at midday as well and go outside and go walk around town whilst everybody has their lunch at their desk. Which I mean, I guess, is a positive thing that I'm forcing myself away from my desk.

Adeel [32:32]: Yeah, I generally dislike having lunches with work people, but that's when a lot of good stuff happens. Have you ever left a job because of this, or whether it's on your own accord or somebody else's, or has it always been just kind of something in the background, but you've left for other reasons?

Lizzie [32:53]: It's usually, well, yeah, it's definitely been for other reasons, but... there have been scenarios where it has perhaps been quite a contributing factor to my decision to leave. It's not been, you know, the only reason. There have been, you know, there have been other major issues that, you know, have been the reason for me to leave. But I won't, you know, I won't dismiss the fact that it's kind of a relief. It has its benefits. in the sense that it can encourage me to leave an already bad job.

Adeel [33:33]: Yeah, yeah.

Lizzie [33:35]: And it kind of makes me maybe happier about leaving.

Adeel [33:40]: Yeah. And now that you're furloughed, you're working remote like all of us are. Yeah. Do you think when you go back, it's going to be, you know, you're probably doing Zoom meetings or whatever. Do you think it's going to be... you think you're going to have some more, maybe some more flexibility to work from home or is it going to be, you know, your boss going to have everyone back just like before?

Lizzie [34:01]: I mean, this is kind of the catch 22 for me. Like I'm a really social person. I love surrounding myself with people. So this lockdown is driving me insane.

Adeel [34:11]: Yeah.

Lizzie [34:11]: So I, well, I kind of am thankful for the fact that I don't have to deal with all these triggers that are in my office. I equally have triggers here. I have my neighbours. I have my housemates. So to me, you know, I'd actually rather be in the office because I am such a social person and I like being around people and almost in a way my house sometimes can be too quiet. I actually live on a really busy street. Like my bedroom window leads out onto like one of the busiest roads in my area and my house can be so quiet sometimes that it makes my trigger sounds amplify and so i actually open my window a lot of the time whether it's raining cold whatever outside i open the window to let the noise of the traffic in to drown out my trigger sound yeah so like i will i will open a window at night even if it's middle of the winter because our neighbors are being loud or my housemates still staying up and watching TV downstairs. I will open the window to allow the noise of the traffic flowing past to be a distraction from my trigger sounds.

Adeel [35:33]: Yeah, makes sense. A bit of that white noise in the background to mask stuff.

Lizzie [35:39]: I do kind of I do think it's the as bad here as it is being my office in terms of triggers. So, you know, for me, it's a no brainer. I would, I would rather be in the office. Weirdly.

Adeel [35:58]: And what, so you're talking about work, you know, colleagues and housemates. What about family? When you see family, what's, what's that like?

Lizzie [36:09]: So, I mean, I know we kind of began this call with me saying I don't really know anybody that has it. But my mum, I think, I think does. I just don't think she has it to the extent that perhaps I do because she's a really placid person. So like maybe she does have the same sensations that I do when it comes to her triggers. And we've actually talked openly about it.

Adeel [36:38]: You have, okay.

Lizzie [36:39]: Yeah, and I know that she has certain triggers, and part of me through this process has wondered if maybe as a kid growing up, knowing and being aware of her triggers quite vividly, that maybe it kind of then forced mine in a way. But she's never really... I don't think accepted that perhaps she has it. So the reason I said at the beginning of the call that I don't really know anyone that has it is because I don't know anyone that has it that I can relate to and discuss it with. I think my mum has it but she doesn't seem to get she won't acknowledge it or she hasn't owned it yeah she's not quite owned it yet she doesn't seem to get as angry as she knows that I do if that makes sense and I don't know if that's just because of her personality and she like it's her nature to be a bit more placid and passive with things but really maybe you know there is real internal turmoil for her but she's not really expressed it right well what were some of her reactions growing up uh you know without going into what her triggers might be was she did she take it out on you guys somehow like uh raising her voice or leaving so weirdly no we would just um so me and my dad um used to almost laugh about it and obviously being being a misophile now it kind of upsets me that we used to do that because I used to obviously just think oh this is just you know something that winds my mum up that's funny you know rather than thinking hang on there are things that wind me up and you know they're quite similar and this isn't funny to laugh at like I kind of never had that thought process so it was kind of like we would be on the train sometimes and um the three of us and someone would open a packet of crisps or it would just take a guy sat next to my mum to get a laptop out of his bag and you could see her sink into her seat and just huff and roll her eyes and then she would turn she would then turn to me and my dad and be like oh for god's sake and you know just we knew immediately what she was talking about because you know she always got wound up with these sounds but her way of expressing that was to literally just sink back roll up roll her eyes and huff and just then sit there quietly and almost just take it and she'll just stare blankly like directly in front of her almost as her way of trying to push it out, I guess. She was trying to blank it out without having any coping strategies like I do with headphones or anything like that.

Adeel [39:45]: So a bit of a British reaction.

Lizzie [39:47]: Yeah, exactly. So, yeah, she's the same with... She's the same as I am, sorry, with, you know, not even having to hear the sound yet, but knowing what's coming. Oh, God, with the visual, yeah. Yeah, the guy getting out his laptop to her is, oh, God, he's going to start hammering the keys. You know, the noise of the click of the keys of his keyboard, she can't deal with. It's a trigger for me, but it's not, I don't think, up there as badly as, you know, mouth sounds and eating and other things like that. And she's the same with Chris, like rustling the packet. Sorry. Yeah, and... rustling the packet, eating the crisps, the general noise that that involves. And I think sometimes, because in the UK, I don't know what the US is like, but in the UK, it's quite common to have a meal deal. So you get a sandwich, a bag of crisps, and a bottle of Coke.

Adeel [40:55]: We have the same thing, but everything's twice the size.

Lizzie [40:58]: Yeah, and a deal price. So if they've got crisps, most likely they've also got some soda and so then they'll they'll open the soda and just the hiss of the noise of the soda popping yeah will kind of annoy my mum as well and she again knows that's coming because she's they've got the crisps and then they finish the crisps and you know she's like elated thankfully they finished the crisps finally but then you hear the hiss of the the bottle opening or the can of Coca-Cola opening. And then again, she just huffs and goes, oh, and then kind of goes back inside herself again until that noise is over. And I've kind of watched this process. I've watched this process growing up, I guess, and not really realized that perhaps, you know, that is a mirror of me or maybe I even learned that behavior from that.

Adeel [41:55]: Yeah, we don't know exactly, but I've heard that theme a lot. Just recently in an interview, having some of that stress transferred from another person that you were around growing up into you. And what was your dad's role in all this, other than being the big jokester?

Lizzie [42:18]: Entirely that, to be honest. So, I mean, even just before this, interview I actually was FaceTiming them and I told them all about it and you know again I tried to kind of get conversation out of my mum about the subject to see if there was any more that I could you know maybe bring to this interview that maybe I hadn't realised like I asked her if she had ever noticed me being particularly angry when I was younger about certain noises which she hadn't but whilst this was all going on my dad sat there giggling and then like pretending to eat crisps and kind of making the noises and kind of laughing laughing about the fact he's mimicking the trigger sound and i'm like we've talked about this dad for like a year i can't believe even now especially before i'm about to talk to adil you're doing this you know like He was still joking. I think, yeah, he was still joking around. And luckily the way he did it, it didn't trigger it for me. But, you know, you could see my mum because it was right in her ear. You could see my mum kind of like suddenly go, oh. And so, you know, I think that's a lot of the reason why my mum kind of weirdly doesn't accept it for herself yet because she's always had my... dad just being very quick to dismiss it as her just being annoyed and you know oh god having a bit of a moany personality you know or a british personality right yeah and have you told uh any other like siblings or anything any other family members Yeah, so I actually don't have any siblings to moan at, so it's just my parents that get the brunt of it. But I actually have a cousin who, he's, what is he now? I think he's 20. He'll kill me for not remembering. He's 20, and it's taken probably up until like a year ago for me to spot that he might have it.

Adeel [44:39]: Oh, okay.

Lizzie [44:40]: because he gets really annoyed with his little sister he's got two younger sisters that are twins that are both 10 years old and so you know they're like typical kids like eating with their mouth open like throwing like well not throwing food around they're not that young anymore but you know just eating a bit more aggressively without as many table manners as you might have when you're older and so he just thinks that he's getting annoyed at one of one of the twins for being particularly rude but when I watch it when I go over there and I kind of see him getting annoyed with her mouth sounds and her you know way of eating and her slurping of pasta or anything like that I see a lot of my own kind of responses in him. And weirdly, he's actually now drawn my attention to my other cousin. Oh, gotcha. So now when I go and visit, I kind of watch her whilst we're eating for triggers, which is stupid.

Adeel [45:49]: Do you talk to him about it?

Lizzie [45:54]: I have had some few words about it with him and I've explained to him uh you know what i have discovered so far about it and the fact that the condition um but he doesn't seem to have anything else that triggers him like nothing at all it's just his little sister eating And I hope for his sake it stays that way.

Adeel [46:19]: Yeah, I mean, I have heard of single triggers with people. Actually, my last interview I just posted had a single... Well, I don't know when this is going to post, but yeah, there are single triggers, but it's just like there's that fight or flight which just makes it different. And you know that that person has something off that we all kind of share.

Lizzie [46:41]: Yeah, and I do kind of feel... I feel his pain sometimes because, you know, he's 20. He's still living at home. And obviously, if he is to express his annoyance with his sister doing what she does, he kind of gets met with, well, you could be living on your own.

Adeel [47:02]: Oh, yeah, that's true.

Lizzie [47:05]: You know, you don't have to be here. You know, we don't have to feed you. You know, you could go feed yourself and, you know, so, you know, any, any little moment where he gets annoyed with his sister, you know, he's not really allowed to express that he's annoyed about it.

Adeel [47:25]: Oh, so he has had that, that feedback or from, from parents or?

Lizzie [47:30]: Well, yeah. I mean, they, they all know that it annoys him. Okay. I don't, I don't think they've realized to what extent.

Adeel [47:38]: Gotcha. Yeah.

Lizzie [47:40]: So yeah. So it's interesting to obviously witness because I'm kind of starting to see that maybe he's coming into something that I think actually possibly started for me around the same age.

Adeel [47:58]: Gotcha.

Lizzie [47:58]: Because I can't really think back to anything that really was a trigger for me pre-18, I don't think.

Adeel [48:06]: Okay, okay, so it's been something you've noticed later on. Well, at least you got out of school okay and weren't completely distracted during high school, which seems to be a big problem for people.

Lizzie [48:18]: Yeah, well, I mean, during this process of trying to kind of think about it a bit more, I have thought back and I did go to boarding school, which meant I shared a room with five, six other girls I was surrounded by people constantly. I never had space to be alone. And so, you know, there were times where I would get annoyed with maybe some of the girls in my room. Like, you know, like you do as a kid, you kind of, even at boarding school, you still treat it like a sleepover. Stay up late chatting and, you know, whatever. And I did used to get annoyed with that. things when I was younger but I just thought it was you know me being annoyed with the fact that they weren't being considerate to others and allowing others to sleep but then I would look at you know my friends you know completely passed out you know already asleep they didn't care and so I'd kind of be lying awake thinking oh god I wish they would shut up or you could hear like the girls in the room next door you know being being noisy as well and that used to keep me up even though once I'm asleep I am a heavy sleeper you know it was just for me a lot of the time it was that process of getting to sleep even as a kid at boarding school you know it was difficult and so I do think that it's possible that you know I started to have triggers back then but it's really hard for me to objectively kind of

Adeel [50:03]: look back at that time in my life and really know whether they were triggers or not right it's interesting well um yeah we should start uh start to wrap up here but uh yeah i'm curious uh i know it sounds like you've you know put some thought into this before before the uh before our interview i'm curious if you have yeah any other things that you want to share with people or advice you want to give um to people who are listening maybe some insights you found i mean

Lizzie [50:33]: Yeah, I mean, the main insight, obviously, that I found was, you know, the whole idea of the podcast, the Spotify playlist.

Adeel [50:41]: Yes.

Lizzie [50:41]: You know, once you've got the headphones in, you know, that go-to, have it downloaded. So if you're ever not on a Wi-Fi signal, you know, you've got it there. It's already downloaded, you know, ready to go. But, I mean, weirdly enough, I actually sometimes listen to... like asmr which i know yeah it's really controversial but uh so controversial because a lot of it i hate a lot of it i absolutely hate cannot listen to it i throw my headphones off and i think oh no no no no stop like make it stop but there are you know if you can bear to listen to you know a series of different asmr sounds you might actually find one that actually does have the positive effect that, you know, everybody that loves ASMR gets. Because I, you know, I sometimes don't want to listen to music. Like, I love music. I'm big on music. But sometimes I just need noise, just a noise that, you know, just drowns out everything else around me. that is almost like a constant, a bit like when you put brown noise over these interviews, you know, just something that like levels everything out. And weirdly enough, I found that in some ASMR.

Adeel [52:16]: Do you have a playlist or something of ASMR that you kind of go through? I guess it's probably individual for everybody.

Lizzie [52:24]: Yeah, well, yeah, exactly. Because, I mean, you know, I try to listen to podcasts sometimes, but you know there are some podcasts where as soon as someone starts talking and they've got a hiss in their voice or a click in you know in their teeth or the microphone or something yeah Something like that. I'm just like, okay, well, that's that podcast then. I can't listen to that one ever because it is difficult having it directed into your ear when you have, especially in-ear headphones, can be, you know, can be really difficult. But, I mean, if you can bear it, just really trial and error like those sounds and try and find something. Because, I mean, I try to meditate and I use certain meditation apps And there are some apps that have sounds or voiceovers to help you and guide you through the meditation that I just can't deal with.

Adeel [53:32]: Yeah, Headspace has that British guy, I guess.

Lizzie [53:36]: Yeah.

Adeel [53:36]: It didn't seem to trigger me that much, but yeah.

Lizzie [53:41]: Well, I actually went to a physical... kind of guided meditation not long before we went into lockdown actually I discovered there's a place near my office where you can go on on your lunch and just have a guided meditation session it's really good and I was going a few times a week and then next thing I know I go to this session on a Friday when usually I'd go on a Wednesday And the guide for the meditation had changed to a different person. And it was an hour-long guided meditation that I was stuck in.

Adeel [54:21]: I was going to say, that's worse than a lockdown.

Lizzie [54:24]: Yeah. Honestly, I have never... Well, I haven't felt that bad in a long time, but I was gripping the edge of my seat, listening to the... extra elongated s sounds okay that were being that were being made by the guide and it was the least relaxing kind of hour of sitting doing nothing i think i've ever had especially when i was in a guided meditation yeah at least i now know to not go on that day but i had actually taken a Because, you know, I kind of thought, oh, I've discovered this meditation place. We can go on a lunch. It's great. Like, you should come along. And we came out afterwards and she's like, oh, that was so good. And I was like, oh, no, it wasn't. No, no, no. That was hell. Actual hell. Because I couldn't just get up and leave. I felt, you know, again, British stoicism, you know, too polite to leave. So... You know, there are, it's trial and error with everything. You know, there are meditation practices that might work or might not. And, you know, unfortunately, I think a lot of the time you've got to just grin and bear it to then find out what works for you.

Adeel [55:51]: Yeah, well, yeah, that's... I know that's really, really awful advice, actually.

Lizzie [56:00]: But that's just what I've had to try and do. You know, maybe... You know, maybe someone listening might have never thought that actually the sound of traffic doesn't annoy them or the sound of a hoover is actually quite soothing or, you know, your washing machine spinning could actually, even though it's loud, could actually be a good... It's constant and you know what it is. Yeah, exactly. A good thing to maybe record and listen to, you know, when you have those triggered moments.

Adeel [56:32]: Yeah. Well, this has been great, Elizabeth. Yeah, I want to kind of, we can obviously go on longer.

Lizzie [56:40]: I mean, I could talk forever, as you can probably tell.

Adeel [56:43]: Yeah, it's been great to have you on. And yeah, good luck with everything.

Lizzie [56:48]: Yeah, no, thank you so much for having me, really. And honestly, what you're doing is, you know, it's great. Putting the initiative out there yourself to do this. So really, thank you.

Adeel [56:59]: Thanks again, Lizzie. I really enjoyed that and hope you listeners did too. Remember to check the show notes for that playlist and also links to the Misophonia Association for info on the convention coming later this year. Let me know what you think about the show in our Instagram or Facebook at Misophonia Podcast or on Twitter at Misophonia Show. Please leave a review if you like the show on Apple iTunes. Music as always is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [57:51]: Thank you.