Pauline - Understanding Community Through Shared Struggles

S4 E25 - 8/18/2021
The episode delves into the unique experiences of living with misophonia from the perspectives of Adeel and Pauline. Adeel discusses the significant impact of trivial sounds on individuals with misophonia and the condition's complex nature, potentially overlapping with other disorders such as hyperacusis, HSP, anxiety, OCD, and borderline personality disorder. Pauline shares her personal journey, emphasizing her struggles with social situations due to being an HSP and her coping mechanism of journaling. Their conversation highlights the importance of finding a supportive community that understands misophonia, with Pauline sharing a transformative friendship with another misophonia sufferer. The episode also explores the role of technology in maintaining connections and the value of sharing experiences within the misophonia community through the podcast. It concludes with a reflection on the podcast's contribution to building support among sufferers by providing a platform for sharing and understanding misophonia experiences.


Adeel [0:01]: Welcome to the MISSIPHONIA podcast. This is episode 25 of season 4. My name's Adeel Armand and I have MISSIPHONIA. This week I'm recording the intro from up near Lake Superior where I'm on vacation for a few days. I initially thought I'd try to get a quiet space like I normally do, but I figure maybe I'll try to pick up some of the beautiful white noise in the background of the waves crashing against the shore. This week I'm bringing you the conversation I had with Pauline, who lives in the UK, but has spent a lot of time working for news organizations in the Middle East. She just found out about Misophonia a few years ago, and it was a bit of a revelation, as it usually is, explaining some of the rough experiences she had growing up, as well as the coping mechanisms that she instinctively came up with. We cover all that, plus life with Miso in the Middle East, and now moving back in with her parents, who were her original triggers. Announcement again, interview slots are still open for Season 5, going fast. There are still some slots for September and October, so please grab one. A couple more episodes left over the next few weeks, but season five will then begin in probably around mid-September. You can find the link to sign up in the show notes. All right, now here's my conversation with Pauline. Pauline, welcome to the podcast. Great to have you here.

Pauline [1:30]: Yeah, lovely to be here, Adeel. Thank you for inviting me.

Adeel [1:33]: Yeah, so yeah, why don't you maybe tell us first kind of whereabouts you're located.

Pauline [1:40]: Yeah, I live in the UK. I'm in a tiny little village. Now, this is an interesting one. It's called Fingering Ho. Now, I always get funny looks when I tell people that.

Adeel [1:50]: Yeah, okay. What a way to start the conversation.

Pauline [1:52]: Yeah, but it's just outside Colchester, which is the oldest reported town in the UK. Oh. Yeah, but the place that I live is very rural, so I'm looking out at the moment over a field of sheep.

Adeel [2:08]: Oh, yeah, beautiful. That's the idyllic. Yeah. And just maybe, well, I'm sure we'll get to this a little bit, but is that location kind of due to misophonia? Is that something you kind of gravitated towards, that kind of environment?

Pauline [2:26]: No, it's actually just where my parents are living right now.

Adeel [2:28]: Okay.

Pauline [2:29]: Well, I'm living with them. So, yeah, I moved in with them when I came back from the Middle East.

Adeel [2:34]: which will yeah when I start talking about you know my background and stuff yeah well yeah I mean up to here so I usually ask kind of where people are located and uh then kind of what kind of line of work they're in like what they do

Pauline [2:45]: yeah so um well right now i'm embarking on a freelance writing career i have a background in broadcasting i worked for 20 years for the bbc first and then al jazeera in qatar for the last six years or so i'm just back from there really in the last well a couple of years ago i got back from there And so since then I've done a master's degree in human rights and now trying to get my writing published. So I'm covering quite an eclectic range of subjects from human rights and counter-terrorism, the use of drones, the Middle East, Yemen in particular, because I travelled to Yemen when I was in the Middle East. And that's really obviously a very sort of interesting area at the moment with what's going on. there with the war right a lot that we know about a lot i'm sure that we don't know about that's going on over there absolutely yeah yeah so so that that's what i'm up to at the moment trying to get that off the ground which I've always worked at big organizations in the past. So this is a really new venture for me. This is really quite tough.

Adeel [3:56]: Why did you decide to make this shift?

Pauline [4:00]: Because it's something that's always been burning in my heart to do. And after I'd been working in the Middle East for a while, I came back and I thought, right, it's time to reset. Plus I turned 50 just at that point. So it was a milestone. And I thought, now or never, you know? So I thought, well, why not give it a go for a while? If it doesn't work out, okay, I've got some contacts. I can probably move back into what I was doing before. Right. We'll just take it from there and see how it goes.

Adeel [4:27]: Okay.

Pauline [4:28]: I've always followed my nose, really, I think, when it comes to my career. I've never really planned very well. Yeah, I know.

Adeel [4:38]: yeah no i mean a lot of us tend to be i think we have a lot of different uh interests and i mean i know a lot of uh people are either you know add or kind of proverbial add where we just have a lot of different things going on and uh just kind of follow our follow our nose i know i definitely do that almost to a fault where it's like uh i mean today i was like okay i have like there's like four or five like deep projects i'm working on now and i have to like the the amount of time that i'm gonna have to spend like watching you know you and i nerd out so like i have to like learn everything about a subject so oh god that's just like me i'm like youtube playlist that i have to watch i'm calculating like how long is this gonna you know take me to like be to the point where i feel like i have some kind of a where i don't feel as imposter syndrome to kind of you know experts or whatever it is creative or or technical or something so Anyways, enough about me. So have any of these decisions been, it sounds like, yeah, there are stuff that have been gnawing at you, but any of these decisions influenced at all by your sensitivity to sound? I know a lot of people kind of like gravitate towards more private workspaces. I'm curious if that has ever been a factor. And we'll get into how it's kind of played into your career, but I'm just curious.

Pauline [6:04]: Yeah, I think actually, it's funny, you probably hit on something that I hadn't really thought about much before, but I think I've got overall sort of highly sensitive personality. and which includes the misophonia but i've got i've got it in a lot of other ways like you know being sensitive to emotion and i have to take out i have to take out time to be on my own a lot i have to be you know i like sort of my own time i have to do it to be a normal functioning human being otherwise you know i get really itchy i can't function very well if i don't get that time out and i think writing is is as i've sort of learned that writing is the perfect thing for me i've always journaled throughout my life and that's been like a sort of like a mental health thing i've used it to cope with situations and emotional um issues that are going on in my life so i think i think you know i'm it's coming it's almost like it's always been coming if you know what i mean Coming back to the writing has always been there for me.

Adeel [7:13]: Is journaling something that you've done regularly or is it just to cope with if you happen to be going through a rough time?

Pauline [7:23]: No, I've kind of always done it whatever happens, but I've found that it has helped me as well. It's been a byproduct, you know, the helping my mental health has been a byproduct of doing it, really. But, yeah, I've always done it. I've always liked to document and, you know, write about things that are going on. I've felt it's important. I sometimes do look back on things, but not that often. So, you know, but I'm writing a book, so they've come in useful for that, for sure.

Adeel [7:50]: Oh, for sure. And when you write your memoirs later about your great life and everything, I'm sure it'll be very useful. Are there a lot of ripped, messy pages about misophonia triggers in your journaling? Yes, some.

Pauline [8:08]: But I never knew it was a thing until about three years ago. So I got through my whole life not realising that it was me that was the problem. I thought it was all these people that made these disgusting noises that were the problem. I didn't think it was me. I thought everyone felt like me. I thought everyone just thought, oh my God. So I never realised until... And it was working at Al Jazeera that I discovered what this was because there was a guy working there who, well, maybe I can get onto what I was doing there because I was working at Al Jazeera on the project, which is to upgrade all of the broadcast infrastructure, which required a lot of moving people around and replanning their space. And we were building new studios, building new buildings. I had to move the whole of the Arabic Channel into a new building before their 20th anniversary for a relaunch. And there was a guy working in the programs department in the Arabic Channel and he He came to me one day and he said, you must make sure that I get my own office in this new space plant. And I said, all right, okay. Why is that? Because he wasn't a manager. And there was this big thing at Al Jazeera, you'd only have your own office if you were a manager. And he said, well, I've got this thing about sound. And I said... all right okay and he said it's i've got a doctor's letter i've got you know i've spoken to the doctor about it it's a recognized thing and it's called misophonia and so but you know you know the weirdest thing is it didn't ring a bell at the time i didn't make that connection with me yeah right at that moment It was only later when I thought, right, I'd better do some research on this because, you know, I need to justify.

Adeel [9:56]: I'm dying.

Pauline [9:58]: If I'm going to get this guy an office, I've got to justify it. Yeah. So I did some research. And then when I started doing the research about it, I thought, oh, my God, this is what's been troubling me all this time. And all of the memories of all the different things that happened over the years came flooding back. And it was a complete shock. Eureka moment. It was amazing. And I just, I almost cried because I thought, I'm not mad. Yeah, you wouldn't be the only one who cried. Yeah, it was amazing. Okay, lots. Yeah, it was an accident really.

Adeel [10:37]: Yeah, lots of stuff. Interesting things right there. One thing, the first thing I want to ask is what I don't know if it's appropriate, but what was the ethnic background of the gentleman that you... Because I grew up, you know, I'm South Asian, grew up in a Muslim family, so it's just interesting to hear about... Was this another Arab person who... Yes, yeah, yeah, he was Arabic, yeah.

Pauline [11:04]: Located in the Middle East? Yeah, I think he was from the Levant somewhere. I'm not sure exactly where, whether he was Syrian or Lebanese. I'm not sure exactly. but he was from that sort of there was a lot of arab expats that worked in al jazeera in qatar

Adeel [11:19]: Oh, fascinating, because I mean, you know, that would not be who I mean, just having grown up with a lot of these cultures, that's not what I would expect for someone who would go to a doctor and actually get a doctor's note. Like mental health is not really talked about. This one is not even known here amongst doctors. It's amazing that that that was. Do you know more about like. where he went to that doctor, kind of like how that happened?

Pauline [11:49]: No, you know, I really missed a trick. I never really, because it was very close to the end of my tenure there, and so I never, I mean, I got really busy with other things, and I never really went back to him and had a proper conversation. I could. Sure, sure. I could now, actually, because I still, I know who he is.

Adeel [12:06]: Well, maybe, yeah, I would love to have him on the show.

Pauline [12:09]: Oh, right. I'll see if I can do some research and find out. Yeah.

Adeel [12:15]: Okay, let's get back to you. So picturing you're about to cry doing research for this. And that's not uncommon. I mean, so many people are like, they find out what it is. However they find out, they're just going down the rabbit hole online and are just kind of blown away. So how did that change your life, I guess?

Pauline [12:36]: Big question. Well, I think that's a really good question, actually. Because I think... Well, it brought back all the things that... I think it sort of reinforced the fact that I wasn't the problem. Well, I know I was the problem, but it wasn't my fault. I wasn't being difficult. Because I remember the first thing I do remember about misophonia is I was, I think, about 12 and I was at the kitchen table. And I felt really, really angry and disgusted with the sounds of my father eating toast. And it just, I felt almost uncontrollably like I just needed to flee. And I didn't realize what that was. Obviously, I didn't at the time. So I was just 12 and I had no idea what any of that was. But I think I always thought in my family that I was the difficult child. I had a slightly difficult sort of upbringing. um felt um like the sort of the odd one out in the family if you know what i mean and i just felt that was that all that was kind of wrapped up in that so to get that signal that actually no it wasn't you being difficult or or different or unusual you've actually got an issue you've got a problem that you can't help it's not your fault you know So I felt a little bit bullied, really, I suppose, in my family. And I'm wondering if, I don't know whether that plays into, I know other people have perhaps mentioned that as well, that maybe that plays into the condition. I don't know. If it reinforces the condition?

Adeel [14:16]: Mm-mm.

Pauline [14:19]: Yeah, how you feel in your family or by the people who trigger you. Because for me, my triggers are definitely family. They're not so much general out in the community. I can sit happily in a cafe or in a cinema and never get triggered. Mine are very specifically...

Adeel [14:39]: yeah my father my mom and my partner actually of uh 25 years but yeah i mean that's a common thing is that at least it starts in the family it and it most often then starts to proliferate to like uh you know i can't be a movie theater uh but that that all that stuff usually happens uh later on like as you get into your 20s and whatnot but yeah very common for mom or dad or both to trigger and then potentially depending on what type of people they are to kind of like dismiss it maybe mimic it and just kind of do all that nonsense when your dad I know that's the question when your dad ate that toast that morning that wasn't the first time right that he would have had breakfast with you It's just something all combined on that day to kind of like start this terrible journey for you, I guess.

Pauline [15:35]: yeah maybe maybe i just remember that not something happened but something in your brain or or something in your perception yeah i don't know because i mean that's definitely that i i remember that day like it was yesterday and and yet i don't remember anything around it at all just that at that one moment in time is stuck in my memory for for my whole life and I don't even remember much after that and I don't remember anything before it in terms of my misophonia. I don't remember anything else really much triggering me, just that one instance and then from there on in every morning I had to struggle with that situation and do things like blocking my ear and I still do that because now I'm back living with my parents again for the first time since I was a kid. And now, of course, I hadn't thought about that when I came back here. And now I'm sitting at the dinner table with my finger in one ear trying not to look obvious. And it's difficult. Yeah.

Adeel [16:40]: Did you tell them now after all these years, after now knowing what it is that you have misophonia and it's a real thing?

Pauline [16:48]: I've spoken to my mum about it a bit. I've started the conversation very gently, but they're very, they're very sort of stiff upper lip. You don't talk about health. You just suffer and get on with it. You know, they're not interested really. And especially something like this would seem really, I mean, it would be really, it's really, really difficult. Yeah. It's really difficult to explain. i've i've spoken to my partner about it and he's been really supportive he's been lovely um i mean at first he wasn't at first he was well he wasn't not lovely but he just sort of said look can't you just rationalize this right because like i'll give you a really good example My mum is the most wonderful person on earth, yet she still triggers me. She knits little hats for babies in the premature baby unit in our town. Now, there's nothing more lovely than that, yet the knitting of it drives me up the wall. I want to kill her when she's knitting these little hats for babies. And I just sit there and I think, look, don't be ridiculous. This is a wonderful thing she's doing. How can you sit here and feel repulsed by this? It's nonsense. But I can't help it. You know, it's mad. That's the crazy thing about it, isn't it? I mean, you just, you can't rationalize it. It's not, it's just a switch. It's like a really, a switch in your brain. And then...

Adeel [18:13]: Yeah, it's almost like two sides of your brain become active. It's like one side is like crazy and then the other side can rationalize it in the moment even sometimes. But it's just like, yeah, the uncontrollable rage is just, yeah, you just can't get away from it.

Pauline [18:29]: I can start, especially if I'm not really that stressed, if I'm feeling really relaxed and calm and me and my mom have had a really nice day or something together and then she gets the knitting out in the evenings. And I'll sit and I'll say, right, okay. And I sort of prepare myself. And I say, right, you can do this. You can do this. And I'll almost force myself to watch everything she's doing, like properly watch it. Because I also suffer the nissing as a visual for me as well. It's going to ask. Yeah. I get lots of visual ones. And the nissing is one. And even if I see it, just the fraction out of the corner of my eye, that's almost worse than if I stare at it. This sounds crazy, but yeah.

Adeel [19:16]: Well, if it has anything to do with something about our brain assigning danger to a sound or a visual, then I can see how, you know, if it's something on the side of your peripheral, then it almost seems like maybe some danger is about to approach. But if you're staring at it... it's almost like you have some control. And control is yet another factor. It's like if you can control your environment, like that gentleman at your office was trying to get. If you have control, it's a little bit, you can help. And like you said earlier, lower stress. If you've had a nice day, it can help as well.

Pauline [19:57]: Yeah. Yeah, the control element for me is a really big one. Because I'm a highly sensitive person as well, control is everything for me. I'm a terrible control freak about everything. And what I used to do, because I lived in a hotel, you know, the worst thing about... having my job in in Qatar was I lived in a hotel for six years and you can't control that because you're in a little room and either side of you and up and down above and below you people are always changing And they're slamming doors, they're banging drawers and tottering about in stiletto heels above your head. And, you know, honestly, it was a nightmare. So what I had to do to actually feel calm was I used to go to the souk. And I used to sit... They had a wonderful souk in Qatar, which is like... Well, you know, there's a market. There's basically kind of like a marketplace, but it had lots of wonderful... Oh, a souk.

Adeel [21:00]: S-O-U-K, I believe.

Pauline [21:02]: S-O... Yeah, yeah. Exactly, yeah. And they had lots of lovely cafes in the souk. And I would sit there. I'd go there every evening instead of sit in my hotel room because... Even though there's lots of people and I suppose potentially a lot of triggers, the fact that there was a general sort of hub of noise and people and things happening around. There was no, I don't, that doesn't trigger me. It's usually, for me, it's usually the more subtle the sound, the worse it is. So if it's a tiny little tap, tap, tap, but sorry, so I shouldn't have done that. But if it's a tiny noise above my head in a hotel room, like someone's heels on the floor, that is disaster. But if I'm in an area where there's lots of people and lots of noise and lots of things going on around me, then I'm fine, you know. So I could sit there all evening, feel completely relaxed, knowing that I wouldn't get triggered and I would feel completely fine.

Adeel [22:10]: Makes total sense to me.

Pauline [22:11]: I couldn't kind of get surprised, if you know what I mean. I wasn't sitting in silence and then suddenly that silence is disrupted.

Adeel [22:20]: And if you did get triggered even through the white noise at the souk, you could just get up and move. It's an open space. You're not trapped in a box.

Pauline [22:28]: Yeah, exactly. Yeah. Because I honestly have found, I've prowled the corridors of hotels in the middle of the night looking for the sound, looking for where the hell is that coming from? I've got to stop it. And I've rung reception and said, look, the person above me is walking around. And they said, well, we can't do much about that, madam, I'm afraid. Or there's a tap dripping in the bathroom above me and I can hear it. And honestly, they honestly must have thought I was the guest from hell. But I, you know, it was awful.

Adeel [23:08]: Are you able to get the top floor? I mean, if you're going to stay there for six years, I always ask for that. Yeah. And then I guess speaking of like spaces and going back to that office that you were involved in earlier, do you know what ended up happening in terms of, did anything happen in the office design to kind of like, A, help that one gentleman get a private office or just kind of like keep things quiet in general? Or was there anything done to basically address misophonia on any level?

Pauline [23:44]: It's a good question. I don't know what happened in the end because I left before they moved. But I certainly did, for my part, put a space on the plan for him to have his own office. Whether that happened after I left, I'm not sure. Yeah, because it was quite a while after I left that they moved, I think. Everything there just took long. I mean, it took forever to get things happening and changing. Yeah. Yeah, but I have meant to follow up with him, actually, and see what happened. Yeah.

Adeel [24:21]: Yeah, keep me posted. I'd love to know. The whole world is... The poor guy has no idea. He's probably in the middle of a... He might be listening to this. He might be. Tell me more about your life down in Qatar. Did you notice any difference there with your triggers or just kind of awareness compared to maybe being up in the UK?

Pauline [24:51]: Yeah, I think I felt more in control of it there. I think because I was on my own. So I wasn't living with my partner. My partner wasn't with me there. He stayed in the UK. So I was, at least I was alone. So my immediate environment I could always control, except I did work in an open plan office myself. And so I did... I don't remember any really terrible regular triggers there, except occasionally I'd have people tapping on their desk or clicking their pens and that kind of thing. I remember those sorts of things. But there was nothing that really got to me badly.

Adeel [25:27]: Did you eat in the cafeteria or eat with the team at all for meals?

Pauline [25:32]: No. I sometimes ate in the cafeteria. Yeah, occasionally. But yeah, no, not usually. No. No, I didn't used to do that. I didn't used to do a lot of group eating, that's true. I'm not sure whether that was a subconscious thing or...

Adeel [25:45]: I hate eating. Yeah, I don't eat. I mean, I work from home, but I definitely, yeah, I basically stopped doing the group eating quite a while ago at work.

Pauline [25:58]: Yeah. I mean, the nice thing was I spent, you know, I was able to really spend my alone time and I could, if I was ever really highly stressed or triggered badly, I could get away and I could de-stress myself. through my alone time, which I had a lot more of there, which was nice.

Adeel [26:18]: Yeah.

Pauline [26:19]: Sorry, I could take myself, but there's lots of favorite places I had that I knew I could go to, like places of comfort, if you will.

Adeel [26:29]: In the office environment?

Pauline [26:31]: No, outside. and actually my i was lucky because my job was not it was i had i had a desk in an open plan space but because it was a project and my project was basically basically covered the whole of the network the whole so it covered the all the channels documentary english arabic the live channel everything and the and the um uh you know, the online teams as well. I was walking around a lot, so I was moving about. So I was never really stuck in one place having to listen to comedy. So that's probably what helped. No, that's good. That's the important part. Because they were projects. my job was basically to get out there and talk to people out in their environments and um you know sort of see what was going on around the place and talk to people because i was a communicator communications and it was communications and change role which sort of basically means you're the person who trots along to people and gives them bad news So I would go along and say, oh, hello. I'm really sorry, but you're going to have to move offices or I'm going to have to wrench you out of here where you've sat for the last 10 years and move you somewhere else. So people would often run the other direction when they saw me coming.

Adeel [27:53]: gotcha okay yeah yeah i see i see okay okay um and and so your main coping mechanism is yeah basically controlling the ability to control where you are so you're able to kind of like you're just able to move around to probably reduce the stress a little bit because you're not you're not trapped but uh but if you're if you're communicating with a lot of people it seems like you're probably not uh wearing noise cancelling headphones at all times or anything right

Pauline [28:21]: No, I never really, I never did that. The only time I ever used that sort of thing was when I was in the hotel and I would, I'd use a rainstorm at night so that that would block out any surprise sounds like if someone moved into the room next to me in the middle of the night or something. um so i i had a rainstorm on every night which is well effectively white noise isn't it but yeah yeah yeah i used that which was which was wonderful oh the comfort i found from switching that on was amazing i just loved it yeah yeah it's fantastic yeah um and then i guess yeah maybe let's talk about it because it sounds like you had quite a bit of time between that uh

Adeel [29:07]: your dad's toast and you finding out what misophonia was. Tell me about those years in between. What was it like? Do you remember any interesting moments? I'm sure you had quite a few triggers.

Pauline [29:23]: The weird thing is I don't remember much more about being triggered at home when I was a child. they my triggers got much worse once i was living with my partner like into my sort of 20s 30s 40s that's when i really started noticing um and then that's when the visual triggers started as well because he had he had lots of things that would which would really which would really, I can't say irritate, because it isn't irritate, it's much worse than that. Right, right. He would sit and he would jiggle his foot, or he would twiddle his hair, or there were sort of these tiny things. And he also had a throat noise that he sometimes made. And I found myself mimicking this uncontrollably, and I didn't understand why I was doing it. And it's, I don't know why it was, it was almost like I was trying to send him a message subconsciously. Like, you know, do you not, do you not realize you're making this noise? I'm sort of trying to alert him to it. One day he got really angry. I said, well, what? And he said, why are you copying me? So he knew he was doing, and I said, and I didn't really know what to say. And I didn't know then that misophonia was a thing. So he had this big argument about it. And, of course, he was really angry with me, understandably, because it just seemed really rude what I was doing. But I couldn't help it. And the other ones, the visual ones, I would do things like put a cushion. place the cushions on my lap to hide his foot or put my hand by my eyes.

Adeel [31:12]: Hands, long hair.

Pauline [31:13]: Yeah, my hair was always on the side of my face. It was awful. I thought, what the hell? Why am I having to do this?

Adeel [31:22]: Was that from the get-go or was that after you're committed and there's no way out, really?

Pauline [31:34]: Yeah. I mean, we'd been together for quite a long time. Okay. Yeah. I mean, we were together for 25 years. We weren't married, but we, you know, we were sort of partners for 25 years. Um, and I, um, No, it was never enough. I mean, it never felt enough to break us up, if you know what I mean. Oh, yeah. No, no, no. Because I know it is for some people. Because I'm on some of the Facebook groups. And I know some people are absolutely tortured to the point where they just think, I just can't, I cannot carry on. It was never that bad. It was just at certain moments, it was worse than others, really, I suppose.

Adeel [32:16]: right what about um other friends like social circles um are they aware of your music do you even get triggered by by friends

Pauline [32:26]: No, I don't think I ever have. I mean, I used to get certain things when I was... It's when I'm trapped. So if I'm travelling on a train, for example, and I'm sitting in a seat and there's someone beside me chewing gum, that will do it. So I'll occasionally get it from, you know, people... Well, strangers, for want of a better word. Yeah. But that's only if I can't... get away i suppose really yeah but no no no friends have ever i don't think okay no i haven't

Adeel [33:02]: yeah okay yeah so it's something yeah i mean but yeah it sounds like yeah people people close to you for sure um have been have been triggers have you ever uh gone to see um it has been enough that you've gone to see a professional therapist or uh or anybody no but i i've recently been thinking about it um because and then and then listening to your podcast quite a bit when i've heard british people talking about it um

Pauline [33:30]: I don't think it's not quite as recognised over here from what I'm picking up from a lot of people. I've not been to the doctor about it or I've never seen anyone professionally but I have been thinking about it more recently because it has got a lot worse because obviously I'm living with my parents and the issue here is that they are in their mid-70s and I'm here because I want to make up for lost time when I was in the Middle East I didn't really see them because I didn't get back home very much And, you know, I wanted to have some quality time with them and support them, which timing-wise was great when the pandemic hit, of course, because I was able to, because they're both considered vulnerable, so I was able to go out and do their shopping and look after them, really. So the idea of having quality time but not having meals with them is a bit of a contradiction, isn't it? Because that's an important time. That's an important social thing to do is to eat with your family. And it's really important to my family that we sit down together and we eat together. So I have been thinking perhaps that maybe I could see someone about it, but there isn't really much anyone can really do, is there?

Adeel [34:50]: Yeah, I mean, if you go see them, it's not like you're going to come back and be able to have a giant meal with your family and it's all good.

Pauline [34:56]: No, no. So you've just found my own way through it, really, I suppose. um you know with my own coping mechanisms which aren't all that successful i have to admit but so you are eating with them and uh yeah you're just kind of like eating quickly probably or or just uh well luckily we have the tv on in okay yeah so i usually i zone in on that and yeah i make sure that i'm i actually make sure that i'm not racing ahead because if i race ahead and i'm finished i can't eat to mask the sound oh yes good point so i try and keep the same yeah i see okay

Adeel [35:42]: Interesting. Okay. Yeah. The sounds of your own. Right. You have that internal microphone that will amplify your own noises that can help reduce.

Pauline [35:54]: Exactly.

Adeel [35:55]: Yeah. I never thought about your own eating sounds that way. I mean, I've heard about mimicry, but... But yeah, your own eating sounds can help mask things out without anyone noticing that you have something going on.

Pauline [36:08]: Yes, exactly. And almost in time. I'm almost chewing in time. Honestly, really.

Adeel [36:16]: Now we're next level. Yeah, we're getting to the next level here, but this is, yeah, let's dive into this. I haven't even, so you're, are you kind of watching them to see like when they pick up their food and then maybe calculating how big the, how big the bite is that you can get your, you know, time to chewing right and everything.

Pauline [36:34]: Almost, yeah. But definitely I'm keeping an eye on how much food is left on the plate, how, yeah, when the fork is going. Honestly, it's really talking to you that I've only really consciously realized that's what I'm doing. But I am, yeah, I'm definitely doing that because our kitchen table is very small. So we're very close. That's not helpful.

Adeel [36:59]: that's not helpful no because i was imagining you were at least in the in a giant living room on different sofas and watching tv but uh no a small yeah we have to sit at the table my father insists on it he's very old-fashioned like that

Pauline [37:15]: And it's a very small table. So what I do is I slide my plate. I'm not sure if they've noticed this. Maybe I just look really horribly antisocial. But I slide my plate right to the farthest end of the table that I can. And then I chew in time and watch the telly.

Adeel [37:36]: Beautiful. It makes no sense to me and everybody listening.

Pauline [37:39]: This is a great picture, but this is how I cope. This is my coping. This is the only way that I can do it and be able to maintain a relationship with my family. Otherwise, it wouldn't be good. I have ducked out of meals before because I do things like fasting and I do things like ketogenic diet. So I'm sometimes not eating the same thing or I eat at different times. I've tried lots of different things to help duck out of meals on occasion if I can. But I felt really guilty. I feel terrible when I do that. I know they want to eat with me, you see.

Adeel [38:24]: Do they notice that you're... I mean, do they notice that you're doing... I know you talked to your mom a little bit about it, but do they notice that you're doing things? Do they consider it antisocial? Yeah. Curious how aware they are.

Pauline [38:37]: I think they certainly... They don't... They're not sort of keen on weirdness around food. Okay. So, you know, they consider me a bit odd because I do things like the keto diet and fasting. I think I'm starving myself. But fasting is really good for you, actually. In fact, actually, I've found fasting can sometimes help because it... It lowers the inflammation in your body generally and it can calm me substantially. I find my whole system calms right down when I fast. I fast for 24, 36, 48, sometimes 72 hours. Wow. Completely. And I always do Ramadan, by the way. Oh, yeah.

Adeel [39:25]: I was going to ask you. Ramadan's coming up. But in Ramadan, you can't even drink water during the fast. No, you can't drink water either. But with 72 hours, you must be drinking something.

Pauline [39:35]: Yeah, with 72 hours, it's more like a water fast. Right. Yeah. And the occasional black coffee to stay the headaches away.

Adeel [39:42]: Yeah.

Pauline [39:44]: Right.

Adeel [39:46]: uh okay okay so yeah so because yeah your parents they you said that they were kind of bullied i was just curious if uh um you know if do you wait do you have siblings as well i'm curious yeah i have a brother yeah so it has the um i mean it has the misophonia like um affected those relationships in terms of maybe um causing uh stress or distance between people

Pauline [40:12]: Uh, yeah, I think, I think it's affected my relationship with my father. For me, I don't think for him, because he's never noticed and I've never had the conversation and I don't let it show that I'm upset or that I have a problem with him and his eating. I, I, I'm really, I'm a really good actress like that. So I'll put on a happy smiley face, but inside I'm screaming.

Adeel [40:43]: yeah oh we know yeah yeah so that's interesting because yeah for you yeah sorry go on yeah yeah for me i think i've

Pauline [40:54]: yeah i i i feel more distant because of it with him yeah definitely because it just makes me so angry and you know and you know that my mom does things my mom's quite heavy-handed and she slams doors and she when she empties the dishwasher it's like you know world war iii going off in the house and i just i sit here in a rage and i think can't you just can't you do that quietly why can't you you know

Adeel [41:21]: We're renovating our kitchen and I've specced out like thick sliding doors, you know, so that the kitchen is basically going to be isolated from the rest of the house if needed.

Pauline [41:35]: I've dreamt about going down to the DIY shop and getting those little sort of cushiony things you can put in the door frames. Oh, yeah. Maybe I could do that, you know, to stop the doors from slamming all the time.

Adeel [41:47]: Yeah, it's funny. This week's interview with Mara, I mean, she works in her own house, but also where she does cleaning overnight because she can't handle sounds in the day. Like she has bumpers installed on all the doors, like even without even asking permission, just to kind of, get in the sound of doors slamming so yeah that's definitely a definitely a thing yeah yeah yeah it is a big thing for me yeah very cool um i guess uh so yeah well yeah your siblings so none of your siblings have uh exhibited any signs or anything have have you talked to them about misophonia

Pauline [42:28]: No, no, I don't get on. Well, my brother's okay, but he's another one. He's another intellectual bully. So I'm not really, he and I don't really, I mean, he's in Germany anyway.

Adeel [42:41]: What do you mean by intellectual bully? He just argues with you about everything or just about this and about this? Kind of like thumbs, kind of puts his nose down on, you know, weird conditions.

Pauline [42:54]: Yeah, I mean, he's very science-oriented, so if it's not, you know, if it hasn't been sort of through scientific trials for the last thousand years, then it isn't a thing. He's very sort of, I'm very much a try and see. I'm a kind of, you know, I like to try things, and if they work for me, they work for me. He and my father are very much down the sort of anecdotal evidence isn't evidence. Gotcha. They're sort of, you know, it has to go through the whole scientific sort of process. And he's very sort of dismissive of, you know, lots of the things that I write and the things that I do, you know, and very sort of quite patronizing, you know. It's always been that way in my family because, you know, my... I suppose it's quite a patriarchal situation in which, you know, the female members of the family are a bit dismissed and the male members are the top dogs, as it were.

Adeel [43:57]: Yeah.

Pauline [44:00]: Yeah, interesting. Okay. No, I've never discussed that with him at all.

Adeel [44:05]: Right, right, right. Interesting. Okay, okay. Yeah, that's, yeah. Well, there is a lot of new research coming out. I mean, I've talked recently to Dr. Rosenthal at Duke University and a number of other researchers. So there's just some interesting stuff coming down the pipe. So hopefully we'll change some minds. um what about uh what do you have upcoming i guess um in terms of i don't know in terms of work or stuff you're writing on is uh um are you planning to travel again soon or or are you gonna be focusing on on your writing here at uh at home

Pauline [44:47]: Yeah, for now, obviously, with everything that's happening and, you know, we're still, well, we're not completely locked down here in the UK anymore.

Adeel [44:56]: Well, some things happening in June, I guess.

Pauline [44:59]: Well, from Monday, we're allowed to do things like go to the gym and the swimming pool and that kind of stuff. And, you know, I think some things will open up. But, yeah, I think... possibly from June we might be able to do things but I'm not sure that foreign travel will be among them I have to go to Oman soon because I've got a place over there and I have to I've got some legal issues to deal with over in Oman so I've got to go there at some point but I can't at the moment You've got to send some drones around That's not even funny probably Yeah, if you're talking about Yemen, it wouldn't be funny, but yeah. But Yemen's right next door to Oman. Right. Yeah, I'm basically kind of, I snuggled as close to the border with Yemen when I bought somewhere in Oman, and I kind of got as close as I could to Yemen to buy somewhere.

Adeel [45:51]: Oh, you bought property there?

Pauline [45:52]: Yeah. Yeah. Yeah, I bought a little place there.

Adeel [45:55]: It's quite an emerging market.

Pauline [45:57]: Yeah, you could say that, yeah. Yeah, not so far discovered by that many, but yeah. Yeah, it's a very nice country, Oman, beautiful country, yeah.

Adeel [46:07]: Yeah, no, I'd love to visit there sometime.

Pauline [46:11]: But lockdown generally has been, you know, to get sort of back to the misophonia has been really hard because... I haven't had that relief of being able to go out and take myself to a cafe and just have my own time. It's all been very concentrated, very focused. Although I obviously have my own space in my room, I don't have the headspace because when you're in the same building as people who trigger you, even though you can hear the doors, you can hear... you know, things going on, you never really properly get away. And so lockdown has been woof, difficult, really, really, really hard.

Adeel [46:53]: I hear you. It's like, I mean, especially with you, and I think you're kind of like me in that. You know, we don't necessarily mean we have to have headphones on all the time. I love music, but just knowing that I can have alone time and be able to take a break and go somewhere else is everything. And so this situation of everyone being home all the time and not being able to go anywhere is, yeah, that's tough. In the beginning, I thought maybe, all right, I get to avoid other people. That sounds good. But that quickly kind of something shifted around the end of the year, end of last year. Yeah, it just got really hard.

Pauline [47:32]: Yeah, yeah, definitely. Yeah, I mean, my, and with the HSP as well.

Adeel [47:38]: Right, I've had a couple of those folks on, a couple of people with HSP on. I don't know if you heard those episodes, but yeah, I'd love to hear more about that. Yeah.

Pauline [47:47]: Yeah, well, it just means my central nervous system has just got an increased sensitivity to sort of everything, really. So sounds, you know, general sort of noise, as well as the misophonia type of noises, but also to emotions. Like if there's, you know, if there's tension, and this is quite a tense house, I have to say. There's tension. It's just... I find that during lockdown my nerves have been quite on edge and I get really exhausted very easily and I found myself crying more than usual and all these emotions kind of coming up through me and the stress has been higher and it's been quite tricky. I love, if anyone wants to find out a little bit more about that, I think Elaine Aron, I think, has written a lot on the subject. And my favourite, Susan Cain, although it's not quite the same, it's introversion. I think her book's about introverts, but there's a big crossover between introverts and highly sensitive people. And she often talks about how she needs a lot of quiet time to recharge. If you're working in a busy environment, you have to recharge at the end of the day on your own. And I find that a lot. I have to get away on my own a lot to recharge my batteries and be like a normal person. In fact, funny enough, she even spent time in Qatar and I got in touch with her and I said, I gave her the tip, you know, go to the souk and sit in a cafe and you'll find, you know, you'll find your quiet spot there. And yeah, she said she did. She said she'd done that, funnily enough. So that was really interesting. But yeah, I pick up, I absorb a lot of other people's emotions. So if people are upset, like, you know, especially if they're close relationships, if people are upset, I feel it, I almost feel that emotion in myself as well. So that's the kind of empathic side as well as, yeah, as well as... Did you always have that from like a very young age? Yep, yep. I've always been like that. But again, that was another thing that when I was doing a lot of this research that I did when I was alone in Qatar, I found out about the highly sensitive person condition as well. And I thought, gosh, yeah. Yeah, that is me. That is me to a T. Exactly. And I'm wondering if these, you know, this central nervous system, this increased sensitivity and the neurological, you know, connections around misophonia, whether they're connected. I don't know whether they are. I mean, I guess not everybody who has misophonia is a highly sensitive person, but I've wondered if there's a connection there. because yeah i actually i actually once went oh yeah this is this is an interesting thing i went i went once i got um uh a little bit of many years i don't know if you've heard many years that's a condition where you have um terrible imbalance in nobody quite knows what the why people get many years but you have a dizziness that comes over you very suddenly you can be sick as well but I also had some buzzing in my ears not quite tinnitus but a similar sort of thing and I went to see a hearing an ENT a hearing specialist And they said I'd got extremely sensitive hearing. They said my hearing was off-the-chart sensitive.

Adeel [51:43]: Like a hyperacusis maybe?

Pauline [51:45]: Yeah, I think maybe. I don't think they used the term, but they just said... Because I said, look, there's something wrong with my ears. And they said, no, there's nothing wrong with your ears. In fact, it's the opposite. You've got really hypersensitive hearing. And I only made that little connection recently. And I thought, I wonder if that's got something to do with the misophonia. Because my triggers are very tiny sounds. They're probably the things that people wouldn't even be able to hear. Like when someone's chewing, but they don't have to chew with their mouth open. I don't mind people noisily eating crisps. They can do that fine. But it's the little sounds that really...

Adeel [52:29]: make it worse for me so I don't know where there's a connection there that's the whole sensitivity thing yeah I mean lots of comorbidities definitely with misophonia that that I hear about them you know lots of people hear about like that yeah hyperacusis HSP anxiety OCD there's I haven't heard I haven't heard today about borderline personality disorder so um yeah there's a bunch of things but it's uh it seems like um according to the researchers uh so far that there is something still unique about misophonia even though it could it could overlap but it's not like it's not like it's a one-to-one correlation where one is something is directly causing misophonia right okay so yeah Yeah, super interesting. Unfortunately, we have to talk about it, which we didn't have it, but that would be even more interesting if there was a way to turn it off.

Pauline [53:32]: Oh, yeah.

Adeel [53:34]: It's interesting being HSP and having grown up in a, you know, not just having dysphonia, but in an environment where it seemed to be so basically anti-feeling to be highly sensitive. I mean, you must have just felt... uh extra on guard all the time because you didn't really have any i guess yeah no one was on your level basically no one was really on your wavelength right i mean yeah there's normally you could talk to so were you able to talk to anybody like friends about uh emotional stuff um or did you just journal and keep everything bottled up

Pauline [54:09]: I think that's why I journaled. Yeah, because I didn't talk to anybody about it. The funny thing is the first friend I really spoke to about this was just recently when I did my master's degree at university because I became friends with – and that's the other thing. I haven't got tons of friends. I've got a few friends who I really connect with, if you see what I mean. Because I'm not a really – that's the other thing. I'm not a really – I hate parties. Oh, my goodness. Invite me to a party. I'll make every excuse. Or I'll go and I'll hand out the hors d'oeuvres. You know, I'll busy myself by, you know, I just, I'm not really.

Adeel [54:49]: So I won't invite you to the podcast by the second year anniversary party.

Pauline [54:56]: Well, if it's on Zoom, I'm fine.

Adeel [54:58]: Right.

Pauline [55:00]: Yeah. Because, you know, funnily enough, when I was working at the BBC, I used to have to organise big events. Oh, gosh.

Adeel [55:08]: Yeah, yeah.

Pauline [55:09]: I was fine with organising them, but I didn't really like... you know, going to them. Yeah. So I have, I have a few sort of friends that I'm really close to. And this one particular friend, we seem to gravitate towards each other. And then when we got talking, it turns out she was a highly sensitive person and she also had misophonia.

Adeel [55:27]: Oh, okay. Next I was going to ask if you knew anybody who had misophonia.

Pauline [55:31]: Yeah. And she, she never, she seemed to know it was a thing although she didn't know the name of it but she said oh yeah she goes yeah i've had this i said how did you know how did you know it was a thing and she said oh you know i i've i've done lots of research about it you know before and uh she goes yeah yeah i'm highly sensitive because i knew you were She goes, I could spot it. And I go, yeah, you sort of can. You get a vibe. That's fine. Because you are highly sensitive. You can tell. You pick up.

Adeel [56:02]: You can tell how people react. Yeah.

Pauline [56:04]: Yeah. You can pick up emotions.

Adeel [56:06]: Is there somebody here in the UK then? Or was there somebody somewhere else?

Pauline [56:11]: No. Sadly, she lives in Brussels. Yeah. But we video call a lot. Yeah, and we give each other quite a lot of support.

Adeel [56:21]: Do you kind of like, if you're going through, I don't know, do you, I mean, do you go through, well, if you're going through a moment, do you reach out, like just hit the, you know, send her a quick text or something? Yeah, we WhatsApp. Or do you use each other for therapy?

Pauline [56:35]: Yeah. Oh, you WhatsApp, yeah. Occasionally, yeah, we'll WhatsApp. Yeah, and we reach out to each other. Yeah, if we're going through some difficult stuff. Because she's now, funnily enough, living with her family too.

Adeel [56:48]: Has she gone to see any professionals about any of her conditions? i don't think so no i don't think she has no well you can send a whatsapp later and let me know if she's yeah okay um well cool uh pauline yeah i mean we're heading uh to a about an hour an hour in um But yeah, this has been really great. But yeah, I wanted to hear, is there anything else you kind of want to share with folks listening about your experience with MISO, what you've learned, or how to end the war in Yemen or whatever?

Pauline [57:27]: Yeah, well. I think finding a cure for me would probably be easier than ending the war in Yemen, that's for sure. Yeah, no, I mean, I'm just, you know, I think I'm just sort of you know, getting on with it, I guess. Just trying to, just sort of trying to find new ways of coping every day. And I love listening to your, I love listening to your podcast because people do come up with, you know, some interesting ones. And also it's really lovely when I hear, when I hear people, I think somebody else, I think, was it Lovely Lady from Liverpool that you had on? yes julie yeah yeah well i think she said something about the knitting and i went oh i love you yeah when you hear that somebody else shares your sort of that because that i thought that was a bit of a weird one but when i heard her i think i think she said that i can't remember that but anyway yeah i thought yes So, yeah, I mean, what you do is just, I just want to thank you really because what you're doing is just so brilliant and you're helping people beyond what you could ever imagine by doing this because, you know, really, you know, it's just so good to hear, to share things, you know, to share these issues and, you know, it's nice to have that community out there, people that are going through.

Adeel [58:56]: similar stuff so yeah thanks for that really appreciate it of course yeah thanks for coming on there's a lot of us out there so it's yeah i love hearing these conversations you don't really get to go one-on-one with people about this it's usually you hear about uh some rant on facebook or something so yeah it's uh it's good to hear each other's stories so yeah definitely yeah yeah well thanks so much thank you pauline Super interesting insights we don't usually get to hear, like life in the Middle East and moving back in with your parents after all these years. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. Music as always is by Moby. And until next week, wish you peace and quiet.