Clare - Finding community among London's misophonia sufferers.
Transcript
Adeel [0:00]: Welcome to the Misophonia Podcast. This is Season 3, Episode 8. My name's Adeel Amman, and I have Misophonia. Today, my conversation is with yet another Londoner, Claire. This is at least the third Londoner I've had on the show. leading me to believe that there is some sort of misophony epidemic in the UK, whatever it is. This is yet another great chat, and I hope a great community can form and grow over there to bring misophones together. Claire is actually in fact on a mission, as she says, to find more misophones and spread the word. We talk about that, synesthesia, how miso has affected her family, which is, as you know, a common theme on this podcast. and living in a world designed for neurotypicals. Hey, speaking of community, I started an experiment this week by creating a group chat on Instagram, and it's quickly turned into a lively place for connecting and discussing all things miso. If you're interested in joining, just hit me up at misophonia podcast on Instagram, and I'll add you. You don't have to worry about participating all the time. You can just follow the conversation and you can adjust your notifications so your phone doesn't ding all the time. It's a great place to hang, especially if you happen to be somewhere where you're being triggered. All right, now let's get right to my conversation with Claire. Welcome, Claire. Welcome to the show. Good to have you.
Clare [1:30]: Thank you. Thank you very much.
Adeel [1:33]: So, yeah, we were just saying how there's a bit of a time difference between us. Do you want to tell people where you are, basically?
Clare [1:39]: I'm in sunny London.
Adeel [1:41]: London, okay, yeah, yeah. It's not sunny at the moment.
Clare [1:44]: It's pitch black.
Adeel [1:46]: Yeah, yeah, yeah. What's Derek here to? Yeah, I've had a few people from London, London this year, and there's somebody from Ireland, actually, yesterday, a couple days ago. So yeah, a lot of people in the UK area.
Clare [2:00]: So yeah, London, London, Misefonia seems to be quite London centric at the moment.
Adeel [2:05]: Well, the people I've talked to, they've all said that they don't know anybody who's got it. I mean, maybe I should start there. Like, do you know other, do you have a bit of a little miso group over there in London?
Clare [2:16]: I'm on a mission to find my MISO group and actually this is the first MISO because this is the first time ever in 24 hours I've spoken to two people with MISO. So I had a conversation with another woman last night who's also in London. So yeah, I feel like this is exciting. It's the one thing that makes me feel like I'm not going crazy.
Adeel [2:42]: yeah did you so did you say it's this this these 24 hours was the first time you ever talked to anybody about misophonia or it just happens to be two people in 24 hours two people in 24 hours yeah yeah yeah so uh and did that person have miso as well yes they do okay okay how did you how did you bump into them then um he she's the friend of my boyfriend's Gotcha. Okay. Okay. And how did that come up? Did you see her just totally freak out at a trigger and you're like, whoa.
Clare [3:16]: no i mean i've not actually we just had a virtual call um in these funny times so yeah actually met face to face but um you know where i've been sort of on a mission to understand it more he's sort of been you know talking about it um and you know she sort of mentioned and to him that she might have it and he's like oh you know that has that um so that's how it came about um and where i have been sort of being a bit more vocal about it um you know there was a colleague and and then the person i went to school with who i've known for like 20 years also has it so yeah like the more i've been speaking about it the more people are like oh i have it too
Adeel [4:05]: okay yeah so you yeah you've really been uh kind of spreading the word or or just kind of finding people that's great yeah um and uh so how long so how long have you known that you've had it um i mean even probably before you had it before i had a name actually i've missed a very important person who also has it which is my brother so actually i've spoken to three people in the last 24 hours yeah
Clare [4:28]: um so how long have i had it um my first memory of being annoyed by noise was when i was about six or seven um i used to share a bedroom with my brother you can imagine all those kind of like sleeping noises that sort of you know can drive you crazy i create i create them too so is it is the same brother you were sharing with that that yeah that was misophony as well I just have one sibling, one brother, and we both have it. So, you know, he'd be sleeping away. He's the younger brother. And I'd sort of wake up in the middle of the night just full of rage and, you know, wake him up in really mean ways to make the noises stop. So I'd like to issue a public apology to him for any trauma I have caused.
Adeel [5:20]: A somber and humbling moment, yeah.
Clare [5:25]: well that's it's interesting and did he um did he exhibit symptoms of miso at the time too or did his come out later because i mean he's a little younger so i'm maybe yeah his actually came late uh um and you know his first sounds as far as i'm aware were around the dinner table and he used to accuse me of saying like you know that sound thing you know because First of all, it was like sleeping noises. And then for me, it was the dinner table sounds. And he used to say to me, Claire, you're the one who made me hate eating sounds. It's your fault. Okay, yeah, I was going to ask if...
Adeel [6:02]: Yeah. Okay. So I was going to ask, right. I was going to ask if there was any of that kind of dynamic where, you know, there was some suspicion that, that it kind of like spread through you pointing it out so much. Cause you know, there's always this debate. Is this like hereditary or is it, I mean, is this like, you're born with it, you acquire it. So, so I guess he seemed to think that he acquired it from you.
Clare [6:27]: Yeah. I awoke the misophonia within him. Yeah. interesting and uh and and so how did uh and so your your first trick your first triggers were your brother did it start to expand then to it sounds like it started to expand to the dinner table and kind of other family sounds oh yes it is expanded those are the days where it was just one thing and then it was um yeah the dinner table sounds um i remember actually it's funny with dinner table sounds i remember having this child minder when i was young and she always used to say like children should be seen or heard at the dinner table. And she always used to make this really clear point about this.
Adeel [7:08]: Like a Mary Poppins kind of, yeah.
Clare [7:11]: Yeah, kind of. And she'd be, you know, they'd have this group of kids all around the dinner table munching away in her house after school. And she'd just obviously, and I was like, oh, maybe she had misophonia. And I think, well, maybe she awoke the sort of eating sound misophonia within me. But then it was also... so eating and then it was my brother eating first of all and then it was my dad and then it was sounds through walls like muffled like the radio in the bathroom being in my bedroom and then the TV and then it was yeah and then it's just kind of grown from there and even like the mitokinesia which i mean i didn't even know that was a thing is that even how you say it and i was like that has a name kinesia yeah right yeah i don't know about until probably it's probably been like a year only yeah Yeah, same. And I thought, oh, God, it's so mean that there's a movement one as well.
Adeel [8:10]: Right. Yeah. Movement, visual. Yeah. It's kind of really attacks the senses. So, yeah. So it started to spread everywhere. Like, yeah, I mean, like a lot of people. How did it start to affect, like, school and friends?
Clare [8:27]: You know what? I feel like I've got really lucky in that I don't have any memories of being triggered at school. So I think, I don't know how I've got all that one.
Adeel [8:38]: I know, I don't have that many either. So that's, yeah, that's kind of lucky for us.
Clare [8:45]: I've listened to people on this podcast who obviously, you know, they're studying at the moment and they're having a really tough time with it. Yeah, yeah. The only time I can really recall is when I was at university and everyone started like getting those white chunky MacBooks and sort of bringing them to lectures and they're sort of typing.
Adeel [9:02]: Oh, gotcha. Yep.
Clare [9:05]: feeling a bit awkward, but you know, I was just, it wasn't really a thing. Um, so, but for me it was more like triggers at home. Like, um, when I was a teenager, it was that sort of, you know, with my dad, it would just sort of get worse and worse. Like everything he seemed to do would trigger me. And it's been interesting listening to his podcast and realizing that for a lot of other people, it's also the noises that dads make.
Adeel [9:28]: Absolutely. Absolutely. Yours truly too. And, and how about your mom in this situation?
Clare [9:35]: My mum, not so much. I mean, she does do things, you know, like eating sounds sometimes, maybe certain, like, intonation of the way she says things, but actually, yeah, not so much. But, yeah, it's mostly my dad, which is such a shame. And I do sometimes wonder, like, what it would be like, you know, how our relationship would be if we could sort of, like, remove the misophonia. Absolutely.
Adeel [9:59]: Yeah. I mean, a lot of us think about that. That's where that kind of the shame and the guilt kind of comes in, thinking about all that stuff. And I'm sure we have, you know, we have memories of seeing our parents' reactions. It's not pleasant for them to kind of think about, you know.
Clare [10:18]: them not understanding it at least we kind of understand what's going on it's kind of tough for other people I was thinking about this yesterday with the shame and the guilt and dealing with the reactions from people because you know whenever I speak about it or you know especially to them it's you know people it feels like a personal attack it's like their ego sort of comes back and is like oh you know, well, just ignore it or like, you know, I can't help it. And it's like, no, well, it's just, yeah, you're not the one who has to live with misophonia.
Adeel [10:58]: Right, right, right, right. Yeah. Yeah, I guess from the other point of view, when you're in the middle of a trigger, it's hard to think rationally. You don't really want to think rationally. You don't even know what rational is. It just feels like you're being attacked, like something's going to hurt you. And so if you choose that point to kind of like start to think of words, then yeah, I guess it could definitely come off wrong to the other person who's not really hearing anything. It's true.
Clare [11:32]: And even in the conversation I was having last night, just sort of talking about this and how it is actually quite hard to comprehend how... another person might be feeling like even someone with me Sifonia like where I've had conversations people and different things like they have different triggers to me and so I think wow I don't understand how that can like I understand how that feels but I can't stand being triggered by that sound it doesn't bother me and yeah there's been some glimmers of where you don't feel like wow I don't know how that person feels even though they have the same even though we have the same experience but we you know it's in relation to different things right
Adeel [12:16]: And so how did you, what were some of the ways that you kind of acted out as you were growing up? Obviously not understanding what it was, definitely not having a name. Were you just kind of leaving situations where you kind of, you know, I don't know, throwing things or how did it go?
Clare [12:36]: Obviously, with the early days, with my brother, I'd sort of try to wake him up and stop the noise in the middle of the night. And I remember sort of a lot of screaming, you know, turn the noise down or turn that off. Or, you know, being like, oh, can you just eat differently? You know, I'd be quite vocal about it and then that would end in altercation. But where I've begun to understand it more, I've obviously got earplugs and earphones. And it's funny because even before I knew what misophonia was, like I'd found all these coping strategies that actually everyone else's... discovered too and i was like oh we're really smart people like you know we don't have any kind of medical guidance we don't have any like no it's such a mysterious strange thing and we've all figured out ways to cope and they're all really like similar and i was like oh that's really smart
Adeel [13:34]: yeah hell yeah we are we mentioned it on podcast saying we tend to be smart people so um what did you think it was like would you just think that uh this person was did you just think that the world was full of people who were um like just gross yeah i think that i think that all the time i just think people are noisy
Clare [13:53]: i sort of worry as i know i need to learn to love everybody i'm a yoga teacher as well so i like trying to use my practice to be like love everyone but when you're sort of on the tube or you know moving for your life and there's just like noise everywhere and everyone just feels so noisy it's quite hot sometimes yeah yeah i mean yeah it feels like everyone has no self-awareness and they're just kind of
Adeel [14:16]: extremely selfish um and then when did you um so yeah i mean yeah you you you thought and you still think like we all think everyone's just gross when did you uh how did you find out that it was a real thing with a name it was actually my brother who um discovered it i think it was like six or seven years ago he was like that thing um it's called misophonia it's got a name i was like what
Clare [14:46]: You know, it still went on to Google and then found those like click-baity articles that you often refer to, like hatred of sound and things like that. And I was like, I mean, at the time, I was like, wow, this is incredible. Like it has a name. But it's still quite mysterious, like despite, you know, lots of people writing papers and doing science about it and things coming out, it still feels like a mystery and really hard to explain to people.
Adeel [15:16]: Yeah, it's still, yeah, I struggle to kind of, I think everyone struggles to kind of explain exactly what's going on. We know that it's not just a psychological thing.
Clare [15:30]: Because in the beginning it felt like it was a psychological thing. That was the first research I did. I was like, oh, this is psychological and blah, blah, blah. And then this new kind of about two years ago or a year ago, I don't... i went really into researching um because i just thought this is affecting me so much now it's like stopping me from doing my job um and i need to educate myself on this and just own it because if this is going to affect me for the rest of my life and it's holding me back i just can't have that and then i found so many more things that it you know is actually how your brain is wired um I just thought, wow, it's not my fault, you know. It's just like you're just born that way. And the kind of the things that came out for me were that it's genetic and that, you know, Christopher and I have it. And also it's linked to synesthesia, which my brother and I both have too.
Adeel [16:32]: When I explain that, that is...
Clare [16:37]: It's like there's lots of different types of synesthesia and some sort of research even says that misophonia is like a type of synesthesia. But it's the one that the type that my brother and I have is where we see all of our numbers and letters in colours.
Adeel [16:56]: Gotcha. Okay. Yes. That's what that was. Right. Yeah. You're not, you're not the first people. One of the Johns was on the podcast from, I think it was late last year. Also, also was talking about how he sees colors in numbers and words and music.
Clare [17:13]: Yes.
Adeel [17:14]: Yeah, interesting. Okay. And yeah, go on. Tell me more about some of the stuff that you're reading about or researching.
Clare [17:26]: I went really into that and was thinking, you know, sort of trying to reframe the way that I felt about it. Like there's this sense that you don't like you're sort of going through the world and it just nothing it feels really overwhelming all the time and the misophonia it me it makes you means that you're particularly sensitive it's like you your senses are always like super heightened and maybe it's not that you know you're you're in the wrong feeling so sensitive it's just the world hasn't been designed for sensitive people And I just thought, you know, that only, you know, at work I'd sort of sit there and be so triggered by all of the noises in the office and think, you know, this office was never designed with like sensitivities in mind or sound, like it affects people so differently. And, you know, all of our spaces have never been, it's never been considered like how everyone is unique in the way they work and the way that they behave. you know the environment they need to thrive and you're just sort of shoved into this kind of like one-size-fits-all way of working and doing things in life and if it doesn't work for you if you're not neurotypical which is another new word that i've learned um you know you kind of suffer and you sort of looking around and everyone could kind of focus and get on with their work and i just felt like my brain was on fire
Adeel [18:55]: Yeah, I mean, I'm in tech, so I've gone through years of the whole open office movement.
Clare [19:01]: The worst.
Adeel [19:03]: Yeah. And I remember my, actually my elementary school, which was built in the early 70s back, you know, post-hippie era. And it was a kind of an open office building. Sorry, open environment building, which I didn't have, you know, luckily I didn't have MISO at that time or I didn't notice it. But there was definitely a trend for a while where openness was, you know, touted as great. And I wouldn't want to be in a open elementary school right now, but... I think now, though, just overall, well, at least before COVID, the trend was going back towards more diverse workspaces where there are maybe some open spaces, some kind of... you know quick meeting rooms um you know just different different ways to work i think that's starting to be a trend where designers are getting more creative without with spaces i'm hoping that that uh continues well tell me about kind of where where you're working you said you're i think you're a teacher um no i work in publishing Okay, gotcha, gotcha. Okay, I misheard that.
Clare [20:15]: So I sell books, basically, market books. And it's interesting, I work with a lot of books on, like, resilience and things like that. And I always sort of look at them and I think, oh, you know, if you want to meet someone resilient, you should meet someone with misophonia. Yeah.
Adeel [20:30]: mm-hmm you know i keep i keep seeing like you know autism is has got a lot of awareness and you see a lot of uh concerts and um especially especially geared towards events that are geared towards children but also like i've seen grocery stores here have like sensory um uh sensory um basically hours that are um specific hours of the week that are for people with sensory sensitivities, where they make things quieter, they turn the lights down a little bit. And I'm just wondering, I'm hoping that, you know, more organizations are starting to be more sensitive to people like us who are a little bit more neurodiverse, not just autism, but, you know, misophonia. Have you seen anything like that in London? Like any kind of accommodations for people with, no, I was going to say weird, but for people with, you know, who are not neurotypical, as you say?
Clare [21:34]: You know, when you were just saying about the cinema thing, I was like, wow, that's amazing. That's so good. Yeah.
Adeel [21:43]: I'm thinking of maybe on the website having, uh, I want to kind of like showcase that I like organizations that do this. So I might start to create like a list of these places. Yes, please.
Clare [21:52]: I just think it's just interesting to see what people are doing because I honestly can't think of a single thing here in the UK. But yeah, I can't think of anything.
Adeel [22:00]: Yeah. Yeah, different countries have just different levels of awareness. And then after the awareness, there's like, what's the actual care level? And then what will the people actually do?
Clare [22:18]: I'm in the kind of place where I feel like the only person who is going to speak up for me or make a difference is myself. and that's kind of where I was with work and just thought you know this is affecting my performance this is not healthy for me like this is causing me so much stress on a daily basis being in this environment and no one's going to sit there and be like okay can I help you or like you know should I talk to some of you I was like the only person who's going to do that with myself is me so I sort of like did loads of research made a bit of a case and um you know got the outcome that I needed because you know the company I work for is very compassionate and they're kind of set up to to do that but I know that you know now I've done that once like you know in the future if I sort of find myself in that position again, I would feel more confident about just being like, look, I've got this thing called misophonia and I need some equipment or, you know, I need to sit somewhere special or be somewhere different so I can actually do my job. And this is just my little suitcase of baggage that I come with. So like it or lump it, really.
Adeel [23:31]: Do you want to share a little bit of how you went about that? Because I'm sure some people are like, you know, at an abstract level, they're probably like, oh, yeah, I feel like I should do something like that. But how did you did you just research over like, you know, one night? Did you, you know, or spend a few days, put something together, call a meeting? Like, how did you go about doing that?
Clare [23:52]: well like sort of researching just almost to like affirm the fact that misophonia was definitely 100 real and you know get really up to speed on what was happening um so i i don't know how long i spent researching maybe just like a couple of weeks um and then sort of that built up and helped me build up enough courage to um go to the HR team and just have a conversation. Okay, so you didn't tell your boss necessarily.
Adeel [24:25]: You just kind of went to the company's HR.
Clare [24:29]: Yeah, well, you know, I was going to tell my boss, but I just wanted to, like, speak to someone, you know, neutral, see what could be done. And then I had a conversation with my boss, who's, you know, lovely and really understanding. And then I had... an appointment with a kind of occupational health person. Did they set that up? Yeah they set that up for me and you know I wasn't expecting him to sort of like know what misophonia was but he was very understanding and you know listened and He kind of wrote some recommendations, sort of, you know, based on what I said that was then communicated back to the company.
Adeel [25:17]: So the recommendations like, here's a glass box that Claire needs to be in at all times.
Clare [25:25]: Yeah, soundproof glass box. Yeah. I wish. And then he recommended I go and see my GP, and that was really scary. I don't know why, but I sort of plucked the courage up to make an appointment and went along and was like, oh, I think I have this thing. In fact, I know I have this thing. And, you know, I wouldn't know what to expect. I was kind of the best case scenario has been, oh, yeah, she would have said, I know, I totally know what that is. yes we can i can sort of refer you maybe to an audiologist we can you know i don't know what i was hoping for but anyway she just recommended that i take like anti-depression anti-anxiety medication which you know i've been offered many many times i'm just like no this is not the solution right right right so um i left that appointment feeling pretty like kind of hopeless like just a bit like oh for goodness sake like you know medical part like a doctor's just like doesn't even get it like you know that just proves the point that you know you just have to manage it yourself and sometimes you do feel really alone with it you just think this is just you know everyone else just getting on with things everyone has their stuff like you know I don't know what everyone else is going through as well everyone has their things but you know misophonia really does you know dictate a lot of my life i try not to let it but you know it will a tube journey for me where i'm surrounded by triggers is going to be very different for someone who doesn't have me to go on your right yep the tube and subway um and what do you say that all you can do is really just uh close your eyes and put on some earphones headphones Basically, yeah. Have my little techniques. I'll turn my body away from whatever it is. There's always quite a lot of mesokinesia on the tube, like the gum chewing. Though now people have to wear masks. Don't see that anymore.
Adeel [27:29]: Right, right. Yes. That should probably be permanent for some people.
Clare [27:36]: Yeah, I agree with that. But obviously, since COVID, we've been working from home. So, you know, that was such a... How's that working out?
Adeel [27:47]: Yeah.
Clare [27:47]: At the beginning, it was sort of like a double-edged sword, really. Because in the beginning, I was like, oh, my gosh, you know, this is so wonderful. Like, I don't have to worry about... being triggered at work anymore even though the kind of the adjustments really like just helped so much like it just made it it's like night and day just made it manageable and yeah working from home it was just such a relief in the beginning but I am really missing the human connection even though yeah I don't like being in an office. But I still find triggers at home.
Adeel [28:26]: You miss a human connection even though you don't like to be around certain humans when they're doing certain human things.
Clare [28:30]: Yeah, it's like you can't win. But yeah, there's still triggers at home because obviously I'm living with my parents at the moment. So, you know, hearing my dad on the phone upstairs while working from home, things like that.
Adeel [28:51]: Right. Right. Um, but I mean, yeah. And again, like on the tube, I guess is, is your tool or, um, is your tool to kind of just put on some headphones or do you, I don't know, take your laptop outside or something?
Clare [29:05]: I have different headphones, different occasions. So, um, you know, the sound canceling ones are sort of the, uh, the ones when I'm feeling really triggered. And then I have my normal like iPhone ones where, you know, I just want, And it's just kind of normal. And then... Some more cash.
Adeel [29:23]: Yeah, some more cash.
Clare [29:25]: And then I have these incredible... Because sometimes it's a bit much having music going on and you just want some peace and quiet. So I have these incredible earplugs that I get from a UK pharmacy called Boots. They're these little wax earplugs. And they just... It's like turning your ears off. They're so good. And they're really cheap as well. So I stock up on like 10 boxes of them at a time.
Adeel [29:47]: And is this like the stock Boots earplugs or is this a special brand?
Clare [29:52]: No, they're just my own brand. They're called Muffles Wax Earplugs, if anyone's interested. They're just my favorite earplugs ever. And you put them in and the whole world sort of goes quiet. It's so nice. And then I have a speaker, like a booty speaker if I want some sort of background noise. So I have lots of different things that I do.
Adeel [30:13]: Yeah. Interesting. Yeah. So, yeah, if you don't want to necessarily have the music right in your ears, I never thought about the earplugs combo with some speakers just playing some background music as or even white noise or something. That would be an interesting combination if you don't really care about what you're listening to.
Clare [30:31]: It's really bad. The earplugs in and then sound cancelling headphones over the top.
Adeel [30:36]: Yeah, that's bad. But yes, necessary. I totally get that. And then you put the death metal in the noise-canceling headphones blasting over the earplugs. That's like level 11. Then you don't hear the fire coming in the kitchen or anything.
Clare [30:58]: We were talking yesterday when I was having this conversation and you were saying it would be so nice when you're old and you start losing your hearing. To take the edge off all the triggers. I was like, oh, that'll be the day. You know, I feel like I can hear everything. My dad always says, like, you've got ears like a bat. Right. Because I can hear everything. And I see everything. I hear everything. And I was thinking the other day, like, you know, back in the day where um people used to live you know in little communities and villages maybe they needed like a lookout person if you had someone with misophonia in your community you would have been fine because they would have heard everything seen anything like any danger yeah like you guys could all get out of there and you know you'd be like the you know the chosen person because right the hypersensitive yeah yeah you'll be like the i don't want to say you know you'd be like the the wise old like you know person who can hear and see everything
Adeel [32:08]: I'm thinking the village lunatic, where if they hear something weird, they'll be seeing me screaming like crazy, and then that'll be your alarm.
Clare [32:17]: Well, the village lunatic. I don't like that.
Adeel [32:21]: But that's a good point about when you're getting old. I mean, yeah, losing your hearing, I mean, who cares? You're probably retired. It's not like you need to listen to your boss or anything. You just need your sight so you can just sit on a beach and look at the ocean. And then you listen to white noise anyway.
Clare [32:35]: Exactly.
Adeel [32:36]: Kind of all works out. That's kind of like having earplugs in the speakers. It's like losing your hearing with an ocean next to you.
Clare [32:45]: Basically. And it's like, you know, I think my hearing feels so good anyway. I mean, even though it was to lose it a bit when I'm older, it'd probably just be at a normal level, to be honest.
Adeel [32:56]: Right, right. So, yeah, so you're living with your partner, your boyfriend, right?
Clare [33:05]: Not yet. I mean, we're... moving in together in, like, a couple of weeks, and this is actually causing me some misophonic issues. Yeah, anxiety, because it's a kind of old... big house it's been separated into five flats so it already feels like a little bit claustrophobic everyone's on top of each other and because it's an old building the walls and the ceilings are just paper thin and on the occasions where I visited the place you know you can hear neighbours and I'm thinking oh and sometimes it's really quiet actually like when it's quiet it is silent but then when someone's home you know, you do hear things. And at the moment, the place doesn't have any furniture in it or anything, so there's nothing to absorb the noise.
Adeel [33:57]: Right. That'll help, obviously.
Clare [34:01]: It's keeping me up at night, I'm not going to lie. It's sad because I feel like, you know, this is a really exciting moment. We're sort of moving in together and we're doing the place up and making it how we want it. It's such a great opportunity and something I've never done before and then it's like, I can't get excited about it because I'm just dreading thinking, is this space going to make me ill? Because obviously it's not just a living space. It's going to, I'm going to be there all day working five days a week. And yes, I'm going to be there a lot. And you know, are these neighbors going to make my life hell?
Adeel [34:39]: Who knows? Have you, yeah. Have you, what are your experiences in other places? Have you lived in other places outside your parents' house?
Clare [34:47]: Yeah, so I used to live in a flat, which at the time I didn't appreciate because it was like a new build and it was completely soundproof.
Adeel [35:00]: And I just think... Yeah, like all concrete and stuff.
Clare [35:03]: yeah like really solid and i didn't like appreciate at the time how amazing that was i mean you shut the door and it was like the whole world just yeah yeah um and i think this um you know this new new place i'm thinking oh you know i don't think this is kind of this a space that I need to like feel happy. Like, I mean, I don't, I'm not in there yet. I don't know how it's going to work out and, you know, can always move. But you know, my ideal house at this point, you know, when you drive through the countryside and maybe you look up into a hill and there's like, just this like little speck of a house in the middle of the like mountain or something. Oh yeah.
Adeel [35:45]: I almost get into a car accident. Cause I'm like, Oh, you know, I can't take my eyes off it. Yeah, no, that is pretty ideal. I mean, that's perfect for when you're old and can't hear anything as well. It's just like not really going anywhere. Yeah, no, that's great. But concrete places look great. But, you know, when you move in, like you said, you'll fill it up with stuff. You'll also get to know kind of the routines of your neighbors and whatnot. So I think, yeah, I think, you know, I think you'll adjust.
Clare [36:18]: It's like getting that balance between not letting it dictate your life and rule what you do and where you live and things, but also making sure that you feel happy and safe where you're living. And I agree, when you get to know people, it almost takes a sting out of it. So I've tried to, in my head, I'm making a bit of a misophonia action plan. So, you know, getting to know my neighbours. So I'm not just like, oh, that person next door is just like driving me crazy again. I can be like, oh, you know, so-and-so's just got some friends over and they're having a nice time. Like, I hope they're having a nice time. And I'll put my earplugs in. So I think it does take the sting out of it when you...
Adeel [36:59]: you know become friendly with whoever's you know become friendly and yeah start to start to know you know if you know when friends are coming over in advance like it's uh it helps to kind of prepare your mind what sucks is like if you're come home stressed from um work and then you walk into like a cacophony of sounds then you're then it's just a disaster oh yeah that is the worst like at the moment you know if i come home put the key through the door and i can already hear like
Clare [37:26]: you know, the radio's on. It just is the worst way to sort of like come into the house. You just, oh no, walking into this.
Adeel [37:37]: Yeah, when you turn around, at least you're in London, you go to a London pub and hang out there for a while. Yeah.
Clare [37:45]: What was I going to say? Yeah, with my little misophonia action plan, I'm sort of, like, you know, going to almost, like, type it up and, like, stick it on the wall so I know that if I am sort of having a moment, like, to check the action plan and then, you know, I won't even need to check it, but it's just knowing that it's there so I'll have all the things that... I know it made me feel good, like sensory experiences that make me feel calm, like having a warm bath or getting a hot water bottle or going for a nice walk outside in the fresh air. things like that. And then I'll have like, I'm going to get a white noise machine and I'm making some playlists that, you know, I've heard people on the show talk about making playlists and making sure like the songs are sort of songs that start straight away. Um, it's no kind of like quiet intro, things like that. And also, you know, just sort of am I having my earplugs nearby? So I know I have lots of strategies. So I think there's often maybe Sifonia, um, there's like a pause between when you're triggered and doing something about it because you sort of there's like a standoff almost like oh I'm not I'm not moving or I'm not gonna put my headphones in like they should just be quiet or they should stop doing what they're doing and it's you know it's always me who has to like change what I'm doing and then it's just kind of accepting like oh like and then by the time I actually do some action and do something about it you're so wound up So it's just kind of, you know, just accepting it and being like, right, headphones in.
Adeel [39:19]: Yeah, I know. I mean, a lot of things that sounds like a great action plan or just kind of a list of things we all we all know help. But like you said, in the moment, we just want to get the F out of there or we just kind of like a deer in the headlights. We just kind of like don't know what to do. And we're just assuming that the rest of the world needs to just get their shit together and shut up. So it's good to have a nice list on the fridge or wherever it is on your phone.
Clare [39:50]: Exactly.
Adeel [39:53]: Interesting. Okay. How about your brother? Do you talk to him about a lot of this stuff? Like the family misophonia action plan? Or is he kind of more on his own?
Clare [40:07]: It's interesting because he's more like... even though we both share it like you know he's sort of on his own like I think he has different triggers or he just deals like we're quite different people he deals with things in very different ways to me um so we don't talk about it too much but um But also I think, you know, because he's my brother, I think, oh, like, you know, it's that expectation that he's going to, like, have exactly the same experience as me and deal with things in the same way. So when I find out that he doesn't, that makes me kind of upset. But, you know, it's like he has his own unique experience with it. The one thing we do sort of bond over is like eating sounds at the table. You know, early in lockdown, we were sort of, there was like a thing around like, we're going to have meals all together as a family.
Adeel [41:01]: Oh, so he's living with you guys too?
Clare [41:04]: Yeah, he's here too. So we sort of like, you know, lock eyes across, you know, and be like, oh God. And then we sort of introduce a rule of like always having the radio on. And then sort of... Yeah, gradually the meals are sort of like faded out, just kind of a relief. But it does upset my mum. She's like, well, I wish that we could all eat together as a family. I was like, you know, it's like this vision from society that like, you know, it's this wholesome thing to have like family meals and sit around the table and share food together, which is like a lovely thing to do. But it just doesn't work. for me. So I said like, couldn't we just go for like a nice walk instead? That could be our like, you know, alternative to a family meal, but there's this, you know, idea that, you know, it's nice to sit around together, but yeah. Some of the things are funnier. It's not so.
Adeel [41:57]: Yeah. Why would you make sacred? Why do people make sacred the, uh, as a time to talk the time when there's a bunch of stuff in your mouth, that just seems odd. Get it over with. Then you can go talk. That's fine.
Clare [42:09]: Exactly. Yeah.
Adeel [42:13]: And do you guys, do you guys, well, I guess you guys don't talk about it, but I guess you must have holidays and stuff, right? With even more extended family. Does that get even that much worse?
Clare [42:25]: Oh, well, they live kind of far away, so we don't.
Adeel [42:28]: Okay.
Clare [42:28]: You don't have a lot of. I mean, we, I'm very close to them and, you know, so we do have, you know, when we, You know, I mean, there's people that might send it for me who definitely trigger me. And because I don't see them too often, it's sort of manageable. And I know, you know, I can anticipate it and prepare mentally. But yeah, Christmas, you know, I hear you talk about, you know, Thanksgiving and that kind of dread. So I definitely have that about Christmas dinner. Yeah. things like that everyone's sort of talking about oh it's so exciting to have like lovely meal I'm just like no right yeah I mean I guess it's coming up we're only in October so uh yeah something people should be well are I'm sure are thinking about
Adeel [43:18]: Um, well, we're, uh, yeah, I mean, we should probably kind of, uh, start to, uh, we've already talked for like a good, good 45, 50 minutes or so. Um, you know, just curious, like, you know, I know you've done a lot of research. Um, you know, you've had experiences at work and got, uh, you know, action plans of when you listen to the podcast. Is there kind of anything you kind of want to tell people about your experiences or maybe just make a call out to folks in the UK to kind of get together with you maybe?
Clare [43:51]: Yeah, I mean, I'd love to meet more people who, well, like, you know, chat to more people who have it because I find that is... you know, in the sort of moments where I felt really helpless, that is the most soothing thing, like where, you know, I've had recently, like, you know, I tuned into an episode. of the podcast when I was feeling like that. And it was just like a, it just felt like a bomb. Like it just felt, you know, really soothing. And the thing, you know, it helped to really calm me down and remind me that it's not, you know, it's not my fault. It's not your fault. It is what it is. And, you know, you're not alone. Yeah. Not alone. And, you know, it's, it's ultimately like just looking after yourself and, really carefully um you know i i have to sort of i'm really aware of what i eat like not eating anything like to you know uh how much i sleep like not drinking too much alcohol like things that can kind of over stimulate my system anyway um yeah trying to live kind of like a healthy life so i can sort of stay balanced and manage those those triggers better even though it's not always easy but And what else? Yeah, I just think accepting it, really. Yeah. It can feel hard sometimes, but, you know, I think if someone was to say, would you take away, like, okay, a genie came along, I was like, right, I'll give you a wish. Like, just say the word and I will get rid of your misophonia. I'd probably say no.
Adeel [45:37]: Yeah, that's an interesting question. I can understand saying no, but I think I would say yes. Knowing, though, that I would be a different person.
Clare [45:47]: Well, that's the thing for me, because I feel like it would make me a different person.
Adeel [45:51]: I think I'm awesome. I know you're awesome, too. So, yeah, that would be the one thing. But I think there are many possibilities of awesomeness for people with misophonia.
Clare [46:03]: wouldn't mind just like i would say well maybe could you just tone the triggers down like you know reduce the yeah you know make it less impactful and less painful to hear them but you know maybe um but i wouldn't want to lose the kind of the synesthesia like being able to see the colors or like you know feeling having all those sensitivities like i think the world really needs people who can like feel things who are self-aware who can see things that others can't and um you know i wouldn't want to sort of get rid of that that ability that you know allows me to do that really i think it's i keep thinking or maybe it's like a gift maybe i don't know
Adeel [46:46]: has it helped you in yeah i mean has it helped you in in any kind of situations that that ability to um i don't see the colors like creatively or in some other do you feel like it's helped you in your in your work in in publishing definitely i mean my thing is writing um and i think it it impacts the way that i string words together
Clare [47:12]: I write a lot of poems. You know, I've always, you know, music is such a joy for me, like, you know, making music. Definitely.
Adeel [47:24]: Do you have this stuff posted anywhere, like your poetry or your music or anything?
Clare [47:29]: Not really. I keep it very private. The music was more something I used to do when I was in my early 20s, throughout school, things like that. But I just remember it. My brain really liked music, reading music, making music. It really liked it. It was a real pleasure for me. But yeah, I get it through now, through the way that I can string words together. And also it kind of changes the way that I feel about people. Like if someone's name has a particular like color combination, like that will kind of reflect on how I feel about them and stuff. But anyway, I sort of digress.
Adeel [48:16]: No, no, no. I mean, this is interesting.
Clare [48:19]: I would just say like, you know, stay, you know, stay really positive about it and embrace it. And as part of you and like, you know, just, you know, make a little action plan.
Adeel [48:31]: yeah that's a great that's a great i don't i don't know if anyone i haven't heard anyone um put it put it that way like an action plan which is basically a list of uh kind of having a list of go-tos like your your top kind of um coping mechanisms always there right in front of you so you don't have to think about it yeah i mean i think i'm quite a positive person so i try not to sort of
Clare [48:54]: um you get to you know stop it from let it stop it let it stop i can't walk it's so it's so early in the morning i'm like my brain's like closing down but yeah just um i try not to let it stop me from doing things and living the life that i want to basically
Adeel [49:14]: Well, that's great. Many positive notes there. Maybe we should end it on that. Yeah, a lot of great tips there. Yeah, I'm glad you're able to talk about this more. And it's good to have you find more people in the UK. It seemed like from the people I was talking to in the past, there wasn't a lot of awareness. So it's good to see somebody who's actually trying to do the research and reach more people. So yeah, it's exciting. Yeah. Thanks for coming on, Claire.
Clare [49:44]: It's been a real pleasure to share all this stuff. I feel like, you know, probably could do another hour of like talking about it. I feel like it's just the surface.
Adeel [49:53]: Yeah, I was thinking about that when you said maybe in a year after you move in to your place, we'll do like a little retrospective and see how the new flat is working out for you.
Clare [50:06]: Definitely. I'll let you know how the action plan's holding up. I might have ripped it up by that point. Or no, I hope not.
Adeel [50:14]: No, I think you'll just add to it. I mean, I think you're quite good at research and thinking of new ideas, so I'm sure you'll just add to it and it'll all work out.
Clare [50:22]: Exactly, yeah. It will work out. It'll be fine.
Adeel [50:27]: Great.
Clare [50:27]: She says. Yeah.
Adeel [50:30]: Well, thanks again, Claire.
Clare [50:31]: Thank you. It was a pleasure talking.
Adeel [50:34]: Thank you, Claire. Another great conversation. If you're enjoying the shows, please consider hitting the five stars on Apple Podcasts. Otherwise, hit me up on Instagram or Facebook, Misophonia Podcast, or Twitter, Misophonia Show. If you are on Instagram and want to be in that Misophonia Podcast group chat, just DM me. Music is always by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [51:07]: you