Gilles - Navigating life and work with innovative coping strategies
Transcript
Adeel [0:01]: Welcome to the Misophonia podcast. This is episode five of season two. My name is Adeel Ahmad, and I have Misophonia. This week, yet another conversation with someone in Europe, a longtime listener, Gilles. This is really a wide-ranging conversation that gets into, of course, his background of parents not supporting his condition, even to this day, experimenting with ayahuasca and psychedelics, being unable to eat with his own daughter, and he talks a lot about the work of Tom Dozier, a well-known behaviorist who has published books, videos, and apps on misophonia. And trust me, there's a lot more in this conversation. Shout out again to the Misophonia Convention that will be on in October and online later this year on October 8th. They actually just asked me to do a session about the first year of this podcast. I don't think registration has started yet, but just follow the Misophonia Association on social media for the latest announcements. I'll have links in the show notes for that. If it was in person, I'd have tons of podcast stickers to hand out. But if you want one, just send me your mailing address, either by email, hello at misophoniapodcast.com, or DM me on Instagram or Facebook at Misophonia Podcast, or on Twitter at Misophonia Show. Just a warning that when we get into Jill's past, there is some mention of self-harm behavior, but it's brief. And I assure you, Jill's story is super positive and inspiring to me and I hope all of you. Here's my fascinating conversation with Jill. Jill, welcome. Welcome to the podcast. Good to have you here. Good to finally talk to you voice to voice. I know I've been seeing you on the Instagram for a while. Yeah, I've been trying to raise awareness as much as I could by reposting every time we were posting a new episode, trying to push it a bit, doing my part. As you probably know, I usually like to start off with asking where you're located. Yeah, I'm in Stockholm, in Sweden. I'm a French guy living in Stockholm for 10 years now. Gotcha, okay. So I'm a stranger in a strange land. yeah what kind of uh what type of work do you do uh i'm a strategy consultant okay okay i have a background in engineering which i've heard is a very common thing in people with misophonia yeah yeah i heard i heard i mean i heard that from uh dr john dr marshall johnson said uh a large chunk of our clients are um our engineers yeah there are some people one out of three had some kind of engineering background which is amazing to me And so do you work in, what kind of environment do you work in? Well, you might be working from home these days, but is it typically like an office environment as a consultant? Yeah, typically it's a usual office, open space type of environment. Right now, I mean, for the last six weeks, it's been working from home. which comes with all kinds of new challenges, actually. I've heard people saying that from a misophonia perspective, it was a really good thing. I've had kind of the opposite experience, but we can get into that. Yeah, maybe why don't we start there? I know it's top of mind for a lot of people these days. And you're right, I've had people, past guests, write in, say they want to do an update talking about how great it is. And yeah, there are probably good things, but I'm curious from your perspective, what are some of the challenges you're facing now? Well, what I found out is that When you work from home, you only have online meetings, calls like this, for example. After a while, people get very relaxed at home, and then you have a lot of people chewing or eating or tapping something in the background. When you have four or five people in a call, and one of those four or five people is doing something like that, and it's passed through the audio very clearly to you. And when you spend hours like that in a day, on a normal day when I can actually go to an office, I can find some space where I'm alone, or I can put my headphones on and shield myself from the noise around me. But when you have to work with people online like that, you can't really do that. You can't mute everyone. That's a good point. Yeah. In an office, you can kind of go to us. You can leave the space. But basically, in a virtual meeting, you've basically invited every space in the office directly into your ear. Exactly. And unless you find exactly who... is making the noise that is triggering you it's really hard and somehow selectively mute um yeah and i and i tried to ask several times you know like i have a very annoying noise in the background you know can you please make sure you're not doing this on that but it's funny a couple days ago i actually i actually asked somebody to stop eating during a meeting and uh yeah it's funny because uh you know they get the usual reaction as you know some some giggling or snickering as if uh oh, yeah, it's just annoying kind of thing. Something that people might not know is that when you're using your laptop that way, you're using the touchpad on your laptop. And instead of... Or while you're in a meeting, you're actually browsing the internet or doing something on your laptop. Every time you click on your touchpad, that makes that noise. Oh, yeah. I mean, the microphone's right in the same box. And there's no padding or anything. So, yeah. It came with a... different challenges compared to a normal work environment. So I wouldn't say it has improved in any way. It just moved things in a different space. Do you have a lot of meetings then? Are you kind of constantly... No, things have been more quiet. I mean, they've been better for me, but I had a good six weeks where it was an average of six to seven hours of online meetings every day. Yeah. That drove me crazy. Yeah, yeah, right. The virtual meeting thing is, yeah. And how about the rest of your space at home? Is it pretty quiet, pretty isolated? Yeah, so I mean, I live alone. I'm separated from the mother of my kid. So I'm on my own most of the time. So it's very quiet otherwise. And my apartment is very well insulated. So I'm not suffering from any neighbor noise or anything like that. It's usually pretty quiet. Yeah, so maybe we should, let's swing back then to early Gilles, to young Gilles, or maybe not. Some people have gotten misophonia later in life, but I'm curious kind of when things kind of started for you. Literally for as long as I can remember. Like even very early memories, I must have been even in preschool, so around the age of four. I already remember being annoyed by the noises from other kids during lunch or when kids were eating candies or things like that. Already at the time, it was annoying me. Do you remember how you reacted at that age? I remember being annoyed, but I remember... It might sound very... It was similar to other people. I remember the first time I got really angry, you know, that typical internal boiling sensation that misophonia triggers. It was next to my dad. He was chewing those gums, you know, that people use to stop smoking. And he was chewing that gum so loudly. And to this day, just that memory makes me, I mean, it triggers me. That one memory? Yeah, just thinking back to that moment. And I remember, I think that's one of the earliest memories I have of feeling that anger inside me. Why is he making that noise? Why can't he stop that? It was torture to me. How did you start to deal with it, or if you dealt with it? It has affected every aspect of my social life. in mostly negative ways growing up. So starting at home, you know, when your parents are triggering you, because it wasn't only my dad, you know, that's any kind of triggering noise. And my parents didn't really understand any of that. So every time I complained about the noises they were making, they were... Something was wrong with me, basically. So... Gotcha. And did you have any siblings as well or was it primarily? Yeah, I have two sisters and one of them actually developed misophonia later on. So not as a child, but later on growing up. But yeah, my parents were not supportive at all. Right. Even to this day? Yeah. They don't understand, you know, like the loud chewing during dinner or Talking about triggers, so it's mostly the chewing noises and the sound that people make when they suck on or lick my fingers. Right, right. Did you do anything like, I don't know, leave dinner early? Did you do any kind of... Oh, yeah. You know how we all have our micro strategies. I mean, growing up, I had all kinds of reactions to that from starting to isolate myself during... lunch and dinner time so having dinner on my own or just having another burst of anger at the dinner table yeah yeah and then you know it's um at that age you don't really don't know what's going on so yeah exactly and um it really affected how i how I built my social life. And because it was like that at home, it was like that in school. So I was a very lonely kid most of the time because there was always that thing. And for a long period of time, I didn't really know what was bothering me so much with other people. Yeah. So did you make friends and then slowly kind of step away from them? Or were you starting to avoid people in general and just not approaching people? I had very few friends. And even with friends, I mean, I prefer eating on my own, for example, during lunch. I still do, actually, to this day, even though I even have more friends. Yeah. And that didn't make things easier. That didn't make things easier to make friends when you have that thing and when you have these really strong reactions. Yeah, there was really no support at home. And at the time when I was a kid in the 80s and early 90s, that term wasn't there really. No, it was still years away from, yeah. So if I were to ask a teacher to ask another kid to stop chewing or to be moved somewhere else, the teacher would not understand. There was always something wrong with me. right did did uh did you ever get teased by anybody like students or even teachers oh yeah and even my parents gotcha so and i'm assuming well let me i should ask but like was a lot of mimicking of the sounds you know the usual crap that we all get yeah yeah exactly so making the sounds the sound or exaggerating it actually making it louder yeah No. It's like, oh, you complain about how loud I'm chewing that thing. Well, let me show you how loud I can chew it. Right. You're right. Yeah. Real mature. Yeah. Gotcha. And then how did it affect maybe like grades and school? Obviously, you're doing well now, it seems. Did it affect your grades? There was a couple of instances where I remember tests where made very difficult by torturous yep yeah um there was one test i was still young i must have been eight something like that i just couldn't do it i sat in the classroom and um there was a kid that was sucking on something or chewing something and the noise was driving me crazy it was um it doesn't go and I mean, I got a terrible score on that test. And it's not because I couldn't have done it. It's just I was sitting in my chair. Yeah, exactly. I was shutting down, just waiting for it to be over. Just let me go out. Just let me leave the room. Right. And so, and then did, I'm sure this obviously continued later and into maybe, how about into like college and stuff? Did it start to, you know, at that point you get some choice in terms of like what you want to study and kind of where you want to live a little bit. Did you start to take advantage of some of that? So you get more choice in terms of where you want to sit in a room. So I've learned that sitting at the very far back of the room, so not having anyone behind me, As long as you don't see anybody in front of you visually trigger you. Yeah, the visual trigger is interesting. But I think as long as it's not directly behind me or next to me, I have an easier time to deal with it. That's good. But yeah, the visual part is still something. So if I see somebody chewing from afar, even if I can't hear it, I will get triggered. But I think it's an acquired, some kind of acquired trigger that originated from the initial audio trigger. Yeah, it's something that most people, I think, identify as having started later. It's probably your brain just kind of giving you some more advanced warning. I don't know if you must be familiar with Dr. Tom Dozier. Yeah. Yeah. Yeah, back at the conventions. Yeah. So he has built a model for misophonia that explains how the trigger works and is processed by the brain and how that process, that way of processing the trigger by the brain can actually make it easier for you to acquire new triggers. That's not good news. Yeah. No, it's not good news, but... No, I know, I'm kidding. It's not good news, but once you understand that process, actually, you can make a difference. And it's something I wish I had known years before. Oh, gosh, yeah, there's a lot of stuff I wish we'd known. And when did you hear about misophonia being a thing? I started dating someone at the end of 2018. And like a few weeks into the relationship, I told her, you know, I have that thing, you know, I have some noises that I just can't stand. So, you know, people chewing loudly, chewing gums or, you know, she would not do it very often, but she would lick her fingers eating something. And I told her, typically when you do that, it drives me nuts. And she first started to try to lecture me saying, you know, you're always in charge of your mindset. You know, no response to everything. You know, the typical mindfulness thing. But I told her, you know, I guarantee I can't control that. And she listened and she did some research and she actually found that movie, you know, A Quiet Place. Yeah, yeah. Great movie. Yeah. And we watched it together. And I was like, that's me. They made a movie about me and it wasn't a work. yeah so you only found out really just a couple years ago if that at the end of uh 2018 yeah wow okay how did you get to how did you um did you get through that movie all in one sitting i i found i just couldn't uh it was just too strong too strong uh too strong yeah i had to pause it and come back to it i i went through it in one sitting and it was uh yeah If I would say that I wasn't getting emotional sometimes. Especially that lady, I don't remember her name, that had a very severe misophonia and she had been harming herself in the past. And that was me, exactly me. Because all the social anxiety that comes with that thing, the issues with relating to others and bonding with others. By the time I became a teenager, I think when I was 16, something like that, I started harming myself. And I did that for several years. I see now, you know, watching that movie, it was like, okay, so there's clearly a link between that type of behavior and the pain that comes from misophonia. Right, yeah. So yeah, that movie was an eye-opener. It was like, okay, so it's something that has a name. That was a relief in some way. Yeah. Oh, absolutely, yeah. It is when you talk to somebody, when you see a piece like that, for a while and then, uh, then the triggers do, uh, do come back. Um, and going back to kind of, uh, you, you, so earlier today you sent me some of the artwork that you've drawn and I'll post those when this, when this goes live, if, if that's okay with you on Instagram. Yeah. But I'm curious, um, when, when did you, when did you draw those, were those recent or were those maybe, um, drawings as you were growing up going through some of these episodes? Some of them are like only, um, a couple of weeks old. Some of them are a couple of years old. I think that's actually one of my coping mechanisms. When I'm in meetings, for example, and there's somebody sucking on the mint or chewing gum or something like that. the room, I start drawing on my notebooks. So I can actually tell you, you know, looking at my notebooks, I can tell you if somebody was making noises or not, because there is a drawing like that somewhere. Somebody was triggering me. It's a way for me to kind of remove myself from the room. Yep. Focus your mind on something else. Yeah, exactly. I focus on something else. So I start drawing stuff on my notebooks. Usually making sure nobody else sees my drawings because that could trigger some questions. Yeah, yeah, right. Yeah, one or two of these for sure. And do you have any, yeah, so speaking about coping mechanisms, so drawing, that's a great one, just kind of like an artistic outlet. What are some of your coping mechanisms? I see from Instagram you're in quite good shape and like to work out. I'm wondering if that's your coping mechanism. That's actually... That's how I stopped harming myself, actually starting going to the gym. So when I was 21, 22, I entered the gym and thought, rather than cutting myself, maybe I should build something a bit. So I started exercising quite regularly. So that's definitely been an outlet for stress and anxiety in some way. That's great. Wow, you've got some very productive. That's very inspiring. Gyms, though, can be rough. I see from your pictures that you do usually have headphones, which is probably a must. I would never go to the gym without my earbuds. Right. You know, when you're on the bike or sitting somewhere on the bench and the girl next to you is chewing like there's no tomorrow. Right. it can be very annoying. So I can't imagine going to public places without my earbuds, you know, at least in my pocket. Yeah. Yeah. And it's at least good to have in your pocket. Just knowing that I think you have something on you, you don't necessarily have to wear it. I think it provides some relief. Yeah. So that's one way I cope with it is to have those earbuds on me almost all the time. Even if I'm not wearing them, at least I know that I can No, they're here. I have those Bose noise-canceling headphones, too. They're really good for picking the train or the bus or an airplane or anything. They're a life changer, really. um but my main coping mechanism now is to anticipate situations and not step into those situations yep for example at work um now that i'm a bit more senior i have more control over things like lunch meetings for example so anytime somebody's like let's have a lunch meeting i'm like nope you're fired that's good it's uh you know you want to eat you eat you want to have a meeting we have a meeting but we're not going to have a lunch meeting yes yes that should be written in that should be uh written in management books i believe yeah and uh i mean not only is it a sure way to trigger me but also usually when you plan a one-hour lunch meeting the first 20 minutes are spent discussing what is there for lunch right And then the last 10 minutes are just gathering the leftovers and cleaning the room and things like that. So it's a sure way of cutting in half the productive time of the meeting and also the chewing noises. So now I'm good at avoiding things like that. Also, when working with more junior people in my teams, I have those rules like, And I try to joke when I introduce my working rules, but it's like, okay, rule number one, we show up on time. Rule number two, which might actually be rule number one, is if I'm anywhere in your field of view, you don't eat or chew or do anything like that. And I try to joke a bit when I introduce those rules, but people get the message. As long as I get the message, yes. And, you know, maybe being, you know, maybe being six foot two and 220 pounds. And working out that much. Yeah, that's probably another advantage that people will probably listen to you a little bit more carefully with the amount of time you spend at the gym. And when you introduce these rules, does anyone ask, like, why? And maybe have you, like, maybe discovered other misophony sufferers at work? Before I knew about the term misophonia, for me it was just, okay, those are the rules. Unless you want to be nuts and face the consequences of me being nuts. Those are the rules. But now that I can put a name on it, I can actually be very open and say, I have that condition. So that's why I want to not teach you anything next to me. What do people say? Just don't hurt me. Most people are fine with it. And then you always have the odd person who will almost use it against you. And I think that's human nature. You can't avoid that. Oh, even at work? Yeah. Every time you bring that up, it's a risk you take of giving something to someone to harm you. So that happens. Good thing that with the podcast, for example, and raising awareness on social networks, for example, at that time, I have a colleague who one day saw one of my posts where I actually reposted an episode of the podcast. And he asked me, what is it? So now that this is... this is out there now. We're talking about misophonia. People can come and ask. So, okay, so you're saying you're suffering from that thing. What is it? So I had people coming to me and asking me questions, which is, that had never happened before because just the awareness wasn't there. No, there's something, it's getting around in the air. Like I said, there's still a long way to go, but that's great. I think hearing other people talk about it, outside of like the you know the facebook group rants like just these one-on-one conversations hopefully kind of um kind of help um and yeah another thing i was thinking about i've been thinking about um is trying to um you know you're talking about your work environment just trying to get um in the human resources groups to to know more about it so that they can kind of uh try to retain employees longer or maybe make it easier for Misfunny sufferers, especially if there's a lot of engineers out there, to feel comfortable applying to certain companies. Yeah, I heard that in the US this is recognized as a natural condition that an employer has to do something about. I have no idea if that's the case in Sweden. Yeah, it's the American Disabilities Act. Yeah. And so a lot of people have been using that in colleges and also work environments. Yeah, that's a fantastic thing. I need to look into that here in Sweden if we have something similar, because I think there are a lot of people who might not even know what misophonia is, that are suffering from that. And I think productivity can, you know, if you have a bunch of high, you know, expensive employees who have it and maybe, you know, are at 80% productivity, that can make a big impact to the bottom line. It's definitely impacting my productivity. So I would assume it's impacting, you know, other people with the same productivity. It's, you know, when I say I'm drawing, you know, on my notebooks when somebody's chewing in a meeting, well, what I'm drawing, I'm not 100% paying attention to what's being said. Right. That's, you know, as simple as that. I actually left a couple of meetings saying, sorry, I don't know, I excuse myself and I said, sorry, I have to get out. So I had situations where I told some people, you know, abruptly, please stop making that noise. And that just killed the conversation, you know, that just killed it. And you will to collaborate then to do something productive. Oh, it's a total buzzkill, total momentum killer. Yeah. And also, you know, I understand that, you know, somebody who is chewing a gum, not really paying attention to that, you know, being yelled at, you know, please stop making that noise. I imagine the shock of that person. But then also it takes a lot of energy for me because that person only sees me, you know, being very angry and having that outburst. But that person doesn't see, you know, the long minutes building up to that outburst. And those long minutes of me, you know, keeping things inside. they take a lot of energy. That's a good point. I think when people kind of mock this or don't take it seriously, they don't see how much it gets bottled up in advance. And if there's an outburst, it doesn't come out lightly. It's like there's a lot of prep time. There's a lot of buildup. And that buildup takes a lot of energy. And it takes a lot of energy to keep it inside. And then when you let something out, you don't want to smash that person's face. So you just try to say something. For legal reasons, yeah. You try to say something as quiet, as calmly as possible, and as politely as possible. And that takes even more energy. Yep. But that's invisible to the outside. It's you and only you who is aware of how much energy you just burned trying not to explode. So yeah, that kills productivity for sure. It can make you fail a test, but it can make you completely miss the point of an important meeting at work. Yep. And have you told your obviously, does your boss know? Do you use your boss in the same kind of environment? Office space? No, so I haven't talk to my direct boss really about that. I tend to more talk about that with people who work directly with me every day. Yeah, okay. Thank you. I haven't had really, it's not really something that I'm still, you know, bringing up first thing I meet with someone. Yeah. Yeah. That's the other thing I like to ask is like, even outside of work, like, well, I guess you've only known about it for, well, you've known about it for a couple of years, but it's been bothering you obviously for a while. Like when, when you do meet people for friends or whatever, when do you do, when you bring it up? Is it after? a number of triggers or is it like once you trust the person? Yeah, I think it's after I need to trust the person because if it's, you know. if it's somebody I don't really mind or someone I'm not planning on seeing again or, you know, seeing very often, I might not even bother. Yeah. Have you ever gotten like a negative, has anyone dared look at you and kind of dare, um, argue, argue back or whatever, I guess, you know, since childhood, like, uh, like adults, um, in the past. I mean, the first ones to do that were my parents. Oh yeah, of course. I mean, they never understood them to this day. I don't think they understand. Um, And so how did you tell them? Did you talk to them about it since you found out it had a name? Like approach them with a bunch of articles and whatnot and try to get them to see the light? I tried that last year to bring it up. I was at my parents for my 40th birthday. And I had brought up the topic before. And it didn't change a thing. It was just the same thing as usual. So I actually left my 40th birthday earlier than planned. Oh, okay. Was it more of a disappointment or was it just the triggers were too much? It's both. It's really, you know, and the thing is because the response is so emotional, you know, anything like disappointment is actually just adding up to it. It's just multiplying. Oh, it wears you down. Like, yeah, just like it's exhausting. Yeah. And you mentioned that your sibling, at least one of your siblings developed it later. So I'm wondering, did you... Were you talking to her about it? And how's her relationship with you and your parents? I don't talk to her very often, but I talk to her about that. I don't know how she deals with it. She's very angry all the time. And I think that's coming from it. So every time that the topic of, you know, our sensitivity to chewing noises shows up, it's just mentioning the topic to her makes her angry. Wow, that's sad. She probably has it. It's really hard to have a productive discussion around that without devolving into... like just angry talk. And that's exhausting for me. So at some point I just have to shield myself from that. Yeah. Yeah. Um, and have you, um, so other than you kind of your, uh, coping mechanisms, but have you tried like, uh, um, other therapies or like seeing therapists and even audiologists about it? So I tried, um, the trigger tamer app from Tom Dozier. I've never heard of that. Yeah. Yeah. Didn't work on me. Didn't work at all. It was hard. Is it kind of like an AMSR kind of thing where it introduces sounds? I forget how it works. So the idea is that you find your trigger and then it's exposing you to the trigger gradually, increasing the intensity of the trigger gradually. And I guess it would work for, at least it's shown to work on some people. So I think maybe it depends on how strong your response to misophonia is and maybe how long you've had it. So I've looked a bit into that. It didn't work on me. I'm talking to a therapist about both things. I tried CBT. It didn't work. I tried meditation. Meditation on me didn't work. Actually, it made things more difficult. How did you do that? Were you hearing triggers during the meditation or was it giving you a false sense of security maybe after? It felt like every time I was meditating, I was actually pulling on an elastic band, you know, just building something. And when I stopped meditating, just letting go of the elastic. So it wasn't any long-term effect. I was just more sensitive after. Gotcha. So that wasn't good. So I looked into all kinds of things like that. And then, again, listening to the work from Tom Dozier on that and also reading a bit into neuroscience and how the brain works, I started reading about the default mode network. You might have heard about that. No. Yeah, I don't think so. You want to talk about that? The default mode network, which is... a very nice way of describing a set of structures in the brain that are responsible for trying to reconcile the sensory data that you're perceiving every day all the time and your own idea of reality. I'm trying to put that in layman's terms. It's a reconciliation engine between what you feel and what the real world around you is, basically. And it's a very useful thing to have from an evolutionary perspective because If you feel that the water is cold, most likely it is cold. If you feel that it's warm, most likely it's warm. So it's those structures that are constantly trying to reconcile what you feel and how you build reality from those sensations. And the thing is, when that default mode network is running normally, there's no issue, but then what we've observed in people who suffer from anxiety or depression is that there's some kind of imbalance in those structures. So it starts overriding everything else and it starts running wild instead of being regulated by other parts of the brain. And I thought, maybe that's, maybe misophonia is linked to that. Maybe there is something here. Maybe that's... that trigger processing cycle that Dozier describes in his work. Maybe it's linked a bit to that. So I started researching it and thinking, okay, what can I do then to try to cool off my default mode network and not letting it run wild? Maybe that would help. And I heard that meditation would be one way of doing it. And that's, you know, expert meditators, I've usually, you know, those parts of their brain running in a different way than people who don't meditate. But I never managed to get into meditation really until very recently. I did something a bit radical for that. I attended a retreat, an ayahuasca retreat, which affected a bit the way I'm thinking about misophonia now. I don't know if you've had anyone else talking to you about that. Yeah, I haven't gone, but I know some friends who have, and they love it. Well, I wouldn't say I love it. Yeah, they say they love it. I'm not going to give it any... It's not by any means universal. No, and I wouldn't recommend it to... I wouldn't recommend it as a cure or a solution or anything. And it definitely didn't remove my triggers. It just made my reactions to trigger very different. It feels very different now. So something I did over a month ago. So it was an ayahuasca retreat. So just one night of taking ayahuasca, sleeping on it. And then the day after, trying DMT. which is an active component of that. And that definitely had an impact on me. So the misophonia is still there, but the way I get angry from the triggers feels very different now. It feels a lot more manageable. Ah, interesting. Is it slower to come on or is it not as intense, but it's still there? It's still there, but I feel more disconnected from the anger, if that makes any sense. Before that, I would say the anger would take over me, and that's all I would be. I would become anger. Literally, I would be consumed by it, even if I were trying to draw on my notebooks, focus on something else. You've seen my drawings. They're not happy drawings. No, they're not. And then after that, just thinking about what had happened would make me angry again. But now I feel a lot more disconnected from that. It's as if it had created a gap somewhere between the actual trigger and my response to it and finally how I remember my response to it. And that gap is just enough for me to think, okay, but it's over now. I don't need to still feel angry. That person was chewing loudly during that meeting. That was hell. But now it's over. It's fine. That's the kind of thought that would have consumed me before. I would feel angry for hours after that. Yeah, right. It had an impact on me. I think it's something that we're lucky with that today we have all these brain scan technologies that we can use and there seems to be some kind of re-emergence of the study of psychedelics in neuroscience and how they can help better understand how the brain works. So hopefully one day we fully understand how it works and come up with something to manage that. Yeah, that's interesting. I'm curious to see how that's going to evolve for you. If this is like a kind of a permanent change for you or it kind of snaps back. Yeah, I'd be curious to hear how that goes. It's quite recent. So I said it's been a month now. And again, if I see or hear someone chewing, I still feel the anger, but I feel a bit disconnected from the anger. And just enough to take a step back from it and don't let it consume me or take over me, which is a huge change. Yeah, that sounds very promising. Yeah, that's a huge relief because Otherwise, it's just not manageable. And that had affected, misophonia had affected like all aspects of my life. You know, I have a five and a half year old and I've never really been able to sit down at the same table and eat with her. Ah, so she's triggering, she's been triggering you as well. Yeah, it's hard to explain, you know, a young child, you know, please chew your mouth closed. And it was just unbearable. just impossible for me to be in the same room. And the thing is, apparently I'm really good at building new triggers. Yeah, many of us are. Yeah. And again, when you look at the process that Dozier has outlined for how misophonia works, it's quite easy to understand how it's possible to acquire new triggers. And I've seen that with my kid. So she was making me feel so bad from the noises she was making when she was eating. After that, it was just seeing the kid would make me feel the same way. And that felt horrible because on top of the bad feeling that was triggered by misophonia, you also have the anxiety of... I'm a turtle dad. Yeah, well, that's the guilt and the shame that a lot of us feel in different ways, yeah. And I had a similar situation with an ex-girlfriend, actually, the one who showed me Quiet Please. She tried to be really good at not making noises when she was eating. which I appreciated. But then she was so careful. It's paradoxical, you know. When somebody is so careful trying not to make noises, it gets on your nerves. And then she did also that thing with the nails tapping on the screen of a smartphone. Doing typing or just kind of for fun? No, when you're typing a text or something. She had long nails and her nails were tapping on the phone. And I had never been bothered by that noise, like ever. That had never triggered me in any way. But then I reflected on that. Why did I develop that trigger with that one person? And it's because every time she would sit in the opposite corner of the sofa, spending a lot of time on a phone instead of being with me, mentally being with me, I would feel that sense of rejection, like, okay, what's wrong here? She's closing down or she's shutting me off. That doesn't feel good. And I somehow associated that bad feeling with that tapping noise on the screen. And that follows exactly the trigger acquisition process that Dozier described. So when I found his work and I started to look into it, I'm like, OK, so that's what happened. I felt really bad, and I associated that noise with that really bad feeling. Gotcha. And I think that's why we need to be a bit careful with all those acquired triggers, because it's so easy to build new ones. And I would say it's difficult enough with chewing noises only. We don't need more. Being aware of those things, being aware that you're feeling really bad because that person is doing this, but maybe there's something else. I mean, to me, now it's clear it's not really the tapping of the phone that was making me angry. It was her attitude of not being with me, mentally available when she was there. Yeah, interesting. Somehow your brain made that connection. I mean, it is also, I guess it could be kind of related to fight or flight. It's just kind of a loss of security or a feeling of a loss of security, maybe. Yeah, it's something makes you feel bad in a way. And then part of your brain is looking for something in your environment to justify that bad feeling. And the easy thing to latch onto is a sensory trigger. So it might be a noise. It might be a smell. It might be something you see. But it has to be something that has some kind of frequency to it, also something that Dozier describes, that it's a sensory input that has some kind of frequency to it. And chewing noises, for example, fall into that perfect window a few seconds of frequency. People make that noise with a few seconds apart and that makes it really easy for the brain to pick it up and say oh that's the thing that makes me feel bad actually. Also the physical sensations of misophonia is something I wasn't aware of before. I was just focusing on the anger Your physical sensation or sensing or being triggered by physical movement? No, the physical sensations after being triggered. Yeah, tell me about that. To me, it's like a tension in the chest, like I almost hold my breath when I hear somebody chewing. I've noticed that now that my first reaction is to almost block my breath. Gotcha. My chest gets really tense. It's like having a rope between my throat and my stomach that gets pulled on and gets really tight. But I've seen from Dojo's work that other people have completely different physical reactions. Some of them have a twitch in their foot or in their hands or their neck. It could be anything. But his work has shown that there's always some kind of physical response first. And his theory is that that physical response is the... the first thing actually that happened and then that no not so nice physical response turned into an emotional response that we acquire and then associate with the trigger so holding your breath you know feeling that your chest is not able to really take the air in yeah somehow triggers a stress reaction. And then if that stress reaction is, you know, if you associate that stress reaction with the sound of chewing, then you don't even need the physical reaction first. You just hear the sound and then, okay, you feel as if you were unable to breathe. Yeah, your brain jumps a couple of steps. Yeah, exactly. Which now is clearer to me than it ever was. And again, I wish I had known that years ago. Because now I pay much more attention to those things, which helps tremendously. Yeah, I'm going to start doing that. I mean, I don't know what happens. I think I feel like I seize up or I know my brain can't stop thinking about anything else. But there is a good chance that you haven't noticed yet. Yeah. physical response to it. You know, you haven't located yet what it is. When you go and try to get triggered right after this call. Yeah, but that's the tricky part. I mean, you don't want to go through that. Right. Trust me, it won't take long. I'm sure in the next half hour, I'll get triggered by something. Cool. Well, Jill, I mean, this was, yeah, this has been fascinating conversation from front to end. And do you have anything, yeah, do you have any other insights or anything else you want to say? I'd love to have you back on at some point after you've done more, if you do more, I ask to see how that affects you. But yeah, anything else you want to say? There's something I'm trying now. Again, I've been reading a lot about brain plasticity. Yeah, I've been reading about that too. And the effect of working out on brain plasticity. And apparently when you work out, your brain is easier to rewire in some way. So if I'm being a bit extreme, if you work out feeling angry or with only angry thoughts, you're fostering those angry patterns in your brain. But if you're trained with happy thoughts, you will kind of, you know, wire your brain for happiness. I mean, that's a growth exaggeration. That's the idea. No, yeah, that's the idea. Interesting. Okay. So I'm thinking now maybe it's an experience I'm testing on myself. I'm trying to have some kind of mental theme every time I work out. Trying to, it's almost a meditation thing. I'm trying to think about something like, you know, gratitude, for example. or peace or something like that. And every time I catch myself not thinking about that in the gym, I bring myself back to it. And I've been doing that for a few weeks now. And I'm documenting a bit how I feel and if it helps. But I'm really curious to see if that kind of thing has a long-term effect on the brain. Yeah, that's fascinating. I mean, plasticity is real and you have to see how it affects you. If we're able to prove that working out can help with Alzheimer's and Parkinson's and things like that, maybe we can use that to do something before those diseases or to do something else. That might be my best motivation to go work out, actually. If it somehow cures misophonia or helps blunt it. Cool. Well, Gilles, again, yeah, glad to have you on here. And yeah, this has been great. And good luck with everything. And yeah, let's keep in touch. I really want to hear how some of these things progress for you. Yeah, I would be more than happy to come back on and Again, a big thank you for everything you've done. You can't imagine how happy I was when I found your podcast. It was like, somebody's talking about that. It's out there. There are others talking about it openly. Um, also it's never, you know, in a victim sense, you know, I mean, of course we have sad stories and, you know, there's a lot of suffering that comes with it, but it's mostly, you know, inspiring stories of people who have been able to cope with it or, you know, like stories we can empathize with. It's not about being a victim, really. It's about finding a way to deal with that thing. No, that's the whole point. I got sick of those, uh, those articles with the nasty pictures on, you know, CNN or... other podcasts where it's just, oh, who are these? Let's tell you about these weirdos. This podcast is inspired by conversations, a lot of hilarious conversations with other sufferers at conventions and whatnot. It's just great. I just wanted to have a regular conversation. Thank you for spreading the word so much on Instagram and whatnot. It all helps. I feel like it's the least I can do. And also, you know, maybe there is something with people with misophonia that, you know, in the way we process information, in the way we think, maybe if we can just get rid of the suffering, maybe we can do good things. Maybe we have, you know, ways of thinking, you know. Maybe it's not a coincidence that there are so many engineers, for example. Or so many people who have artistic interests, whether it's music or drawing or things like that. among people with misophonia. Yeah, I don't think it's an exaggeration. The world would be a better place, not just because it's less annoying sounds, but I think we have a lot of potential energy that would help the world. If we could spend that energy on something else than trying not to smash somebody's face because he or she is shooting a gun, maybe we could do something better. I love that. Let's end on that note. And I'm inspired for the rest of the day. Yeah. Well, again, yeah, again, Jill, thanks. And yeah, good luck with everything. Thank you so much. Keep up the good work. Thanks again, Gilles. I wanted to keep going and I really hope we can talk again. I might have to visit Sweden post-lockdown. If you're enjoying these shows, please hit the five stars in iTunes or leave a review if you like. Remember to check the show notes for links to the Misophonia Association for info on the convention coming later this year. Music, as always, is by Moby. And until next week, wishing you peace and quiet.
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