#215 - Early misophonia study participant reflects
Transcript
Unknown Speaker [0:01]: Welcome to the Misophonia podcast. This is episode 215. My name is Adeel Ahmad, and I have Misophonia. This week, I'm talking to Stacey Thal, an accomplished brand and creative strategist. whose journey with misophonia began long before it had a name. Stacey takes us through her early experiences participating in a college study on sound sensitivity back in the 80s, her lifelong struggle with trigger sounds, especially from her mom, and how these experiences shaped her personal and professional life. Stacey now reflects on the interplay between her upbringing, her father's bipolar disorder, and her own recovery from food addiction. We dive into how Misophonia has affected her relationships from family dynamics to workplace challenges and how she's navigated these spaces while maintaining a successful career. It's a deeply personal and thoughtful conversation about coping, connection, and the ongoing need for understanding and research. of course, in the world of Misophonia. After the show, let me know what you think. You can reach out to me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, as always, please head over wherever you listen to the show. If you leave a quick rating, it really helps drive us up in the algorithms and reach more listeners. So my usual announcements, if you want to come on the podcast, just go to misophoniapodcast.com and click the Be A Guest link. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophoniapodcast. All right, now here's my conversation with Stacey. Stacey, welcome to the podcast. Great to have you here.
Unknown Speaker [1:59]: Thank you.
Unknown Speaker [2:01]: So do you want to tell us a little bit? I'd like to ask kind of, you know, where you're located, kind of what you do a little bit.
Unknown Speaker [2:07]: Yeah. After... A bazillion years in hyper urban downtown San Francisco. I'm part of the reluctant mass exodus from the city during the pandemic. And my husband and I desperately needed more space. We were in 900 square feet and found ourselves priced out. in concentric circles and now are in glorious, sunny, quiet, suburban Sacramento, California. So Northern California.
Unknown Speaker [2:41]: Yeah, very nice. I have friends there. I mean, I lived in South of Market, like 7th and Folsom for a long time in about 650 square feet. But I left for similar reasons.
Unknown Speaker [2:52]: No, I was in 5th and Folsom.
Unknown Speaker [2:54]: We were neighbors. So I was there from 2010 to 2016. Okay. Yeah. I mean, I was there from 2003 to 2000... 20 whatever wow something yeah so i'm sure we cross paths yeah yeah for sure cool cool um all right yeah no that's that's that sounds great and uh yeah i guess i guess kind of you know what we do for work or
Unknown Speaker [3:24]: Oh, yeah. I'm a brand and creative strategist. I've been a consultant, startup serving consultant for many, many years. I did a lot of years as well in-house for Google and Walmart and Yahoo and rode the top of brand storytelling in the volatile, crazy world of Silicon Valley marketing and advertising for many years. But on and off, I've had my own consultancy as a... brand director and creative strategist for a lot of years now. So that's what I do from home, gratefully. I did that before that was a thing.
Unknown Speaker [4:00]: Yeah. Yeah. Same with me. It's good to do that. And I'm guessing that also obviously maybe helps with misophonia. Sometimes it doesn't if you have like, you know, construction around the house.
Unknown Speaker [4:14]: Well, yeah, I think that, you know, as I was saying that, it it plays into my want to be at home in a controlled environment you know i don't know that because of my misophonia i don't know that i fared well especially in the silicon valley you know open open office yeah that whole thing was not great for me you know not great
Unknown Speaker [4:41]: Yeah, you know, not to talk about me, but when I first got to California and was in a tech company, it was like 2000, I had an office with walls. And then it gradually, you know, turned into just open office. And then just open desk, you can kind of move anywhere, which actually turned into kind of a good thing because it wasn't unusual to just get up and move and find a quiet place. Yeah. um i don't know that the flexible yeah definitely the open office is terrible if your your neighbor is you know sipping coke or whatever they're doing but uh super flexibility can be helpful which obviously you get total control at home um so i guess um what is it i guess what is it like at home you have a husband is he pretty um understanding as well
Unknown Speaker [5:34]: I'm hoping that he listens to this, depending on how it goes. I don't know. I don't talk about it a lot. It feels like something I got married. I'm 60 years old. I got married at 52 to somebody that was one of my best friends. So that's lovely. But it's not something that I talk about a bunch. I think I've figured out after all these years how to handle it. and so it's not something that comes up i've told him about it but it's not something that we talk about it's not something that um is part of our lives um so i i don't think he knows much about it and um it wasn't until one of my besties my very besties uh you know identified herself as miss um having misophonia that um and is near you know duke university and started listening to some webinars and things like that on that, that we started talking about she and I, and you know, what our experiences were, um, similar and different.
Unknown Speaker [6:37]: Yeah. It's not unusual that I guess it's not, we don't put a spotlight on it at home necessarily for various reasons. Um, so, so you said you're, you're one of your best friends, um, has misophonia as well. Yeah. Yeah.
Unknown Speaker [6:51]: It's interesting. You know, um, I identify as a food addict and, um, And so I don't know if this plays into it at all, but I have found certainly that the people that I gravitate toward in that fellowship, several of them identify as having misophonia. And a lot of them, when I started talking about, when I, you know, self-diagnosed and started looking into that this, what I felt like was an oversensitivity in my own, you know, whatever my temperament actually had a name. and had growing research around it, not so much treatment, but growing research around it. It wasn't until I started talking about it that people started saying, oh, I have that too. I have that experience too. And not a lot of people I found were familiar with that, whatever, moniker, diagnosis, label, whatever. But in my recovery community, people that identify as addicts, i find a lot of people who um women in particular who who um suffer from this whatever disorder yeah and i guess when around when did you uh were you able to identify and self-diagnose and find out you know that it has a name and whatnot yeah um it took a long time i felt like uh growing up that there was just something wrong with me that was my own quirky oversensitive makeup but i remember when i was in college now this is in the 80s that Somebody that was in the psychology department, a peer of mine, a student there was doing a study for their thesis or whatever. I don't know. Some sort of study there where they started talking about, do you, you know, there was like some flyer or something. Do you have a hard time? Like when people chew, does it make you enraged when people slurp their coffee or whatever it is? We're doing a study on this thing. I was like, what? You know, like so many other things in college, having this. you know relatively universal experience that I thought was this quirky malady that I had this quirky singular experience I was having I learned that other people were having it too I don't know that they I don't remember that there was a that there was a name for it at the time or that they shared that there was a name for it But I remember feeling heartened that I wasn't alone. So that was whatever in the 1980s. And then can I ask, sorry, what university?
Unknown Speaker [9:34]: Oh, sorry. Yeah, I went to UC Berkeley. Okay, wow. Was it like undergrads who were doing it? Yes.
Unknown Speaker [9:45]: As far as I can remember.
Unknown Speaker [9:46]: You wouldn't remember their names or anything that I can Google for a paper? No, I'm sorry. It's just amazing that you even mentioned that. That's very cool.
Unknown Speaker [9:55]: Yeah, that was cool. It made me feel less alone. I had my own business as a consultant for a decade and then I went in-house and I started being really I noticed bothered by the behavior of others. And I thought, well, I'm just a jerk. You know, I thought I was just a jerk. But then I started Googling it, right? I started trying to look into it myself. And I think I stumbled upon the name Misophonia. I don't even know how to pronounce it. I haven't talked about that much. Misophonia? Misophonia?
Unknown Speaker [10:35]: Yeah, we usually just misophonia.
Unknown Speaker [10:38]: Yeah. So misophonia, I think I found that word, if I'm not mistaken, maybe like about 15 years ago. And so, you know, self-diagnosed from there. But what I can tell you, and I don't know if this is helpful for anybody that might be listening, but I was diagnosed as a kid with a hearing loss, a significant hearing loss in one of my ears. So my left ear i had um ear infections like sore throats and stuff like that but ear infections where i had a you know ear nose and throat doctor um on call during my youth grade school age and um every year they would do the hearing test you know the whatever van would pull up or whatever the trailer would pull up and they would have you go in there and raise your finger if you could hear the things and every year they would tell my parents you know oh my god she's got some hearing loss um and it was from ear infections that i had as a kid that blew out my hearing on the high end and the low end so i have the mid-range still but what it causes for me as well as especially and as i get older this is getting more significant for me but in crowded spaces, let's say like a restaurant that's like a louder restaurant where maybe they have music going as well, my hearing gets really muddy. It's very difficult for me to hear then. And this has been true for many years. Like I said, it's escalating now, but I thought maybe it had something to do with that, trying to self-diagnose. But mainly I was just having this kind of horrible experience for all sorts of reasons but one of them you know in this open you know um desk environment working in the silicon valley um having a really hard time with people um and and the way that it expressed itself for me was that um i really interpreted it as uh consideration on the part of others so I had some awareness that I was oversensitive but mostly my first reaction was my god can you close your mouth when you're chewing you know And I remember specifically that I had somebody that was down the row of desks from me who would eat at her desk every day. Beyond her chewing, though, there was this clanking of her fork or spoon against her plate that would just drive me mad, just make me feel enraged. And so it became hard for me to... I don't know, survive, let alone thrive in that environment. And I think, you know, circling back that that's part of, you know, a central part of my want to be a consultant and work from home is to be able to protect myself and others from that reaction, right?
Stacy [13:45]: Right.
Unknown Speaker [13:47]: Yeah, no, that makes a lot of sense. And yeah, we initially, it's that disgust, inconsiderate kind of reaction that comes out instantaneously. And that's kind of what others see when they see us react. They think that we're taking, they take it personally because they think it's all about them when it's actually something in us that is not interpreting these sounds. Well, it's
Unknown Speaker [14:14]: and it's a hard thing to do because people are just being themselves and usually yeah eating yeah usually right right it's not wrong maybe they are being inconsiderate maybe they could close their mouths right so i'm not wrong but especially in that environment the pressure to know contain myself when they were um doing whatever they were doing just being themselves was was really difficult i i did not i gratefully i can report that i didn't like Even under incredible pressure, I worked at an agency for a while where it was very deadline driven and I was in senior leadership and it was really, you know, an enormous amount of work and lots of anxiety there. I didn't go off on anyone. I would just kind of implode and get more and more silent myself. you know and then try to do all the things employ head headphones and do like noise cancelling headphones with white noise or something like that to try to drown all that stuff out but then i remember on a performance review that i got um you know how they say whatever 7 000 nice things but you focus on the one thing that an area of improvement or whatever and it was for me they said all sorts of you know wonderful flattering things about me but the one thing that they said is that you know and in times of stress people are afraid to come by your desk and approach you because you seem like, like so intense. And I was like, so offended by that. Like what? You know, like I'm the nicest person. I'm the one, you know, in the break room was like, Oh my God, Hey, great shoes. Where'd you get those? Or whatever, trying to razzmatazz people and keep it light and fun. And I was so discouraged to hear that people were intimidated by approaching me and felt like I was like,
Unknown Speaker [16:10]: um i don't know uh like intense and and didn't want to come near me or angry um but what i was really trying to do was survive right that's interesting i've never had someone else i think say something similar to that but that's kind of how i feel i feel like sometimes my signals are being misinterpreted and because yeah i'm normally the you know yeah let's go to happy hour blah blah blah but then uh a lot of the time people I may be recovering from a trigger at one instantaneous moment, but it has nothing to do with my overall kind of mood. People get the wrong signal. That's interesting.
Unknown Speaker [16:48]: I have a question for you. I wonder if in all the conversations that you've had and in your own experience that it really comes down to particular people. You know, before I did that study when I was at Berkeley, I remember feeling ashamed because, and I hate to say this out loud because I love my mother more than any human on this earth. And we have a wonderful relationship, but I was always driven mad by the way she ate. Like I couldn't look at her, like the older I got, I could not bear watching her eat and the sounds that she made and it actually I feel like I don't know what this is and I wonder if you've ever heard of it but where I have like hand gesture misophonia where there's some way in which she expresses herself with her hands and the ways that she eats and I know I have a girlfriend that feels the same way where I was convinced that it was some kind of before I did this Berkeley study, and maybe it's still part of the thing, but it was some sort of primal thing, right? We were monkeys for a lot longer than we've been upright humans. And so I was thinking this is some vestige of some sort of primal thing where if we were in this tribe of monkeys, that the natural progression would be for me to... kill my mother or something or differentiate from her or go to some other tribe or something like that, right? Go to some other group. And that that was part of the primal, like pushing me out of the nest kind of thing. Have you heard of that? Like people, specific humans or family members or...
Unknown Speaker [18:41]: Oh, absolutely. Absolutely. I mean, uh, yeah, in most cases it does start and linger with those early family members. Did for me, did for like pretty much, pretty much most people. I'm not sure exactly why. I mean, I mean, um, why so, you know, why it's so common, but I mean, I have, um, lots of ideas as other people do on why it starts at kind of a young age with the family because I mean you are around with them the most there's also things happening in the environment that could influence your body to kind of identify hearing as a warning to some kind of danger and if your family is around that just kind of maybe associates um the hand gestures i mean the visual triggers that are so commonly associated with misophonia that makes a lot of sense too okay um the hand gestures maybe don't make a sound so that's maybe a little bit different a lot of people think of uh they use the term mesokinesia i think it's kind of all related i think this is all sensory in general kind of issue and hearing just happens to be um something people i think i i may be digressing i think i think hearing becomes the most if this is a sensory warning and to your point about monkeys i mean yeah i think i think um there had to be some members of the tribe that just had to be more sensitive to certain things you know we're all an evolutionary experiment so we're not all sensitive to the same thing so Whether, you know, you or I are meant to be in 2025 or, you know, 1980 or whatever, extra sensitive to Sam, whether we have to be, maybe not. But I think there is some, you know, early genetic component along with some environmental influences. So, yeah, I mean, these are things that I definitely talk about in terms of where this could be coming from and how it might be related to, you know, these... some seemingly random hand gestures and whatnot. I don't know if that made any sense. I kind of digress.
Unknown Speaker [20:47]: Yeah, thank you. I mean, I think that's the whole point. I felt very alone in this for a really long time and thought it was like some kind of character flaw and something to be ashamed of rather than a semi-common disorder in degrees that other people experience.
Stacy [21:08]: Yeah. Yeah.
Unknown Speaker [21:08]: And that that shame and guilt, especially as our triggers that we don't have, our reactions that we don't even understand are seen by others and then taken personally. A lot of us, we just kind of like just bottle it up even more. And that just perpetuates the issue and makes things worse. I think because it just the nervous system is just even more, I don't know, wounded or on edge or what have you.
Stacy [21:37]: Yeah, exactly.
Unknown Speaker [21:38]: Did your parents... So, I guess, do you want to tell me maybe around when things started for you? Unless you've already covered that. We talked about your mom a little bit.
Unknown Speaker [21:47]: Yeah, we talked about it a little bit. I don't know that I really noticed it. Maybe in adolescence, I had this... because i had awareness about my reaction to my mom's eating when i went off to college and that's why you know seeing that flyer struck me and being part of that study struck me was because i again thought that i was alone in this experience and it was something to be ashamed of and worked on that was my own personal quirk right um like bad daughter um and that's mainly the way that it manifested although you know i don't it's it's odd that um i had it with boyfriends as well where like many, boyfriends could do no wrong in the beginning, but once they became more human, as you got to know them better, spent more time together, there was more familiarity and intimacy. Their eating and especially slurping hot coffee or something like that would just... drive me mad um and i even observed this uh with my own husband now that i think i went for years with and so this this is a part that's you know mysterious for me is that i went for years with nothing that he would do would bother me at all but now it doesn't bother me when he eats but it bothers me when he slurps the particular sound drives me mad and and i can tell that um I don't know how to connect the dots, but what I can tell, I think, is that he's getting some pleasure out of that, what I think is unnecessary slurping. It's not like he's trying to make the coffee. like blowing on the coffee to make it cooler so that he can drink it or drink it faster. There's something in like almost like a baby blowing bubbles or something in a bathtub. Like I'm going, this is a deep cut now, but I don't know if I'll have him listen to this podcast after all. But the way in which he, to my mind, unnecessarily slurps on his coffee. Now, suddenly, I would say in the last couple of years drives me mad where I didn't notice it. I was oblivious to it previously. So I don't know, again, what that is about like a growing sense of attachment and intimacy like a family. we have become this kind of family of two where now it's bothering me so i don't know i don't know what that is but um maybe they'll find out someday but what i do is i subtly because he's just being him um i subtly just plug my ears when i sit next to him and while he can see me doing that gesture he has never ever in these last few years that i've been doing this ever asked me about it So I don't know. I don't know what to say. But I don't know that I would ask him to change his behavior for me, because he's not doing anything wrong, even if it would help me because I have this kind of workaround that I do. But there is that moment where maybe I'm not paying attention where there then there's suddenly this slurping noise, this slurping noise where, like, immediately, I am just enraged. I am like, I don't even Yeah, it's hard to articulate what that sound is. It's almost like How I experience it experientially, viscerally, is like when you're a kid and somebody tickles you, but then they hold you down and it goes too far. Like they tickle you and it starts to hurt and then you're suddenly crying. Like it's...
Unknown Speaker [25:46]: That's a fascinating analogy.
Unknown Speaker [25:48]: Yeah, I don't know. That's what it feels like. That's the kind of experience that I have with it.
Unknown Speaker [25:54]: Yeah, I think that's an interesting analogy. For me, I think it feels like someone just grabs me by surprise and just wants to shake me up, like shake me or something.
Unknown Speaker [26:05]: Yeah, it does hijack you. I mean, that's what's interesting, right? Is that it's... it adds a layer of what I feel is already my distractible nature. Like I'm not the best sleeper. You know, I'm a light sleeper. Movement, sound, change in light or temperature can disturb me, disturb my sleep. So I am, I mean, I definitely identify as sort of having a sensitive nervous system. I think that that's part of the... nature, nurture part of what the building blocks of, you know, what I my addiction that I have that expresses itself primarily in food. So yeah, I don't know. It's mysterious.
Unknown Speaker [26:54]: Yeah. Have you heard the term highly sensitive person?
Unknown Speaker [26:56]: Yes. I mean, I identify as that for sure, but there's some sort of, you know, I don't know, cluster of things. I feel like I've been in this recovery program for 20 years now and 20 years abstinent, the equivalent of sober, like an AA, Alcoholics Anonymous, not having a drink. So in the program that I do that's called Food Addicts and Recovery Anonymous, I... haven't had flour and sugar um for 20 years and i weigh and measure my food without exception now for 20 over 20 years now um and um and so that's a bit of a petri dish you know of being able to observe myself and others and and what we bring in and it feels like there's some sort of cluster of all these things that go together that my highly sensitive person nature um is part of either what set me up for addiction or what had me seeking soothing outside myself from a really young age. I was a thumb sucker and I had a little security blanket far past like Linus from the Peanuts. You know, it's long past when it was cute. So I was always looking to soothe myself and food was, you know, a good way to take the edge off my little tiny self. Didn't have a mortgage, didn't have all the worries that I have today, but had a sensitive soul. Yeah, had a... a sensitive nervous system or something where i was always looking to soothe myself and at some point like happens with other people with addiction you know food caught for me i tried other things but i medicated myself with food i can see that now looking back that i used food as we say in recovery as a drug but i used it specifically as anti-anxiety medication And it worked until it didn't work. It didn't show up on my body. And then I became morbidly obese and spent years trying to do something about that. But it wasn't until I got into recovery and discovered things, again, in this petri dish of thousands of people that are with this shared disease, allergy, however you want to look at addiction, that one of the common denominators is a lot of highly sensitive people in there.
Unknown Speaker [29:15]: Yeah. Did you, um, growing up, did you, um, did you have, do you have noticeable anxiety? Well, I mean, you had this, uh, security blanket, um, um, going on. Um, were you ever, I don't know, parents ever take you into? see a therapist or anything? I'm just kind of curious.
Unknown Speaker [29:34]: No, I never, I think I was pretty, it's a great question. I remember identifying as fear, fearful in grade school that I could, I was smart enough somehow to be able to observe others and to see that things for me hit harder and lasted longer it seemed than others. I didn't have the ability to just kind of like like water off a duck's back or whatever i didn't really have those skills um but it didn't i didn't have any other manifestations i didn't do that i wasn't a whatever a cutter i didn't at that time have an overt eating disorder um that would need help i um And I had really like parents that encouraged me to bring my thoughts and feelings and dreams and all that stuff to them. Very communicative, very loving, very skilled in that way to bring all my stuff to them. So I wasn't hiding my anxieties, but I did grow up in a household with... a father who was diagnosed um manic depressive when it was called before it was called you know more currently bipolar and um so my house was uh volatile um and oftentimes i didn't have the room to feel my feelings there because my dad had a hard time with his own and and mine were particularly hard for him like if i would have great upsets of you know stupid playground stuff was really hit hard for me um but i didn't have you know i didn't i did i bit my nails and they would try so that was feels like now looking back that that was an anxiety thing um so they tried to cure that right like that rather than looking at it from a psychological standpoint um coming at it more of bad habits you know?
Stacy [31:36]: Right. Right.
Unknown Speaker [31:37]: Yeah. Right. Back then it was more about bad habits.
Unknown Speaker [31:41]: Right. Right. It was more like that frame. So I didn't really get any help and I don't know that I needed it because I felt like super supported for the most part on the home front. Yeah. And it wasn't until, you know, much later that I got into any therapy and mostly that was centered around why can't I stop eating? Yeah.
Stacy [32:02]: Yeah, gotcha, gotcha. Okay, okay.
Unknown Speaker [32:04]: And I guess, so things were kind of, well, super, it sounds very supportive at home, but also kind of volatile sometimes. How would that manifest? Like your dad would just have a big temper or just get very emotional?
Unknown Speaker [32:17]: Yeah, you know, like classic changeable. My dad was, you know, to this day, just like couldn't love me more. I'm an only child. We had... very always lived in really small places. So we were on top of each other all the time. So it was this little, you know, tribe of three. It was a lot of around each other-ness. But my dad, yeah, was changeable. You know, most days when I would come home from school, he was an artist and gave that up after some time. and became Mr. Mom. And my mom went to work and kind of held up the family. And so we would, like many families, come together at the end of the day, me from school, my mom from work, and my dad having been there all day long. And so I never knew what I would walk into. He was, most of the time, a loving, wonderful family. And our home was one of warmth. And again, great communication and good humor and wonderful, you know, like artistic stuff and watching movies together and very great. But then sometimes, you know, I would come home and he something had triggered him and he would be. in a mood either a kind of hyper mood where it would be like suddenly he'd want to take pictures and he'd make my mom and I like dress up in certain ways and pose in the house and do different things and he'd be in some sort of manic state but more often the expression was some kind of rage where he would ultimately after hours of screaming threaten suicide So there was that. And that happened, I don't know now, you know, in my highly sensitive self. I don't know how many times that happened. It happened enough. It wasn't a couple times in my childhood. It wasn't weekly. It wasn't monthly. But it was enough times a year throughout the years to make an impression and hardwire me to a certain degree where, you know,
Unknown Speaker [34:37]: it certainly threatened the stability in our home for sure yeah no thanks for sharing that um i know it's yeah not great memories but i just asked these kinds of questions because i've talked to enough people that i've heard stories that kind of i don't know kind of maybe rhyme with that kind of background and i think people i think this kind of stuff helps people maybe I don't know, connect some dots or maybe think about how, you know, a child could have developed all, you know, these warning signals. Like I need to listen for things. I need to like be on the lookout for what mood somebody might be in. Um, and then this, this maybe, you know, turns into kind of something of a disorder later, like misophonia. Uh, Yeah.
Unknown Speaker [35:26]: Yeah. And that kind of hyper vigilance, you know, as a kid and then going out on my own sort of, you know, rural existence, this insular family going from this tiny, you know, life to 35,000 people on the UC Berkeley campus and living at the dorms and stuff like that. It really escalated for me when there was all that stimuli. You know, I went from being my backyard was a national forest to, To, you know, super urban Berkeley with all that stimuli. And this is not an uncommon experience for lots of kids who go off to school. But for me, I think, yeah, that was just very clear that I was easily overwhelmed by all the sensory input.
Unknown Speaker [36:18]: So do your parents now know of your misophonia? Do you talk to them at all about it?
Unknown Speaker [36:25]: i said something to them in passing about it but i don't know that i okay i'm sure not not out of hiding anything right sort of like or not anything like private um because we are generally open books with each other um for better and for worse uh years but um I don't know that I, I think I talked to my mom about it, my mom maybe and my dad some years ago when I connected the dots, but not since then because again, sort of like with my husband and the slurping thing where I've been able to handle it. on my own and not need to burden them with asking them or requesting that they change their own human behavior to accommodate mine. Right. I've been able to handle it myself.
Unknown Speaker [37:22]: Right. So your mom still does her gestures and you just, you got your ways.
Unknown Speaker [37:26]: I don't know what to say about that. No, like what do you don't. I don't know. What do you do?
Unknown Speaker [37:34]: Do you look away or move to another room?
Unknown Speaker [37:37]: I do. I look away and then I tell my friends about it. You know? And what's great about that is that, yeah, there's just a great sense of community in that. I have a few good friends that suffer from the same thing that feels... intolerable, inexplicable, mysterious, but real at the same time. And yeah, I don't know. I feel better when I talk about it for sure.
Unknown Speaker [38:07]: Yeah. And it's great that you have more than just your best friend. You've got other close friends that you can quickly send a text to. Yeah. I guess, yeah, what about like just going out in the grocery shop or just kind of going out in the real world? How do you cope? I guess noise cancelling, headphones maybe?
Unknown Speaker [38:26]: I don't... Yeah, that for me, whatever... expression i have of misophonia that doesn't bother me i think it's again it's kind of like um i don't know more uh i have it with my in-laws um i can i can't i can barely eat with them it's very hard so i avert my eyes um and i try to get out of it if i can um so very much the the visual triggers around eating with your with your in-laws it's not just sounds yeah Yeah, because I cannot have the visual and the sound at the same time. That would drive me mad. So if I have to pick, yeah, there's something that amplifies that.
Stacy [39:19]: Oh, yeah.
Unknown Speaker [39:21]: Yeah? Okay. So I just try to be like, look away. I try not to look. And then if we are... If we are out to dinner with a more broad family or something like that, I will try to seat myself away from them so that they're not in my eyeline. I can't bear it. I don't know. I don't know. I can't bear it. It's really... It's really a tough one for me, but out and about. And again, I told you like this, the muddiness that happens with my hearing out in restaurants is hard for me, but it's more about the intimate setting of things. I will say this is a very deeply personal thing, but it is centered around. eating which is interesting since i whatever i identify as a food addict but um but it's it it isn't with sex and the sounds that come with that that are very human sounds as well or even whatever other kinds of body functions that doesn't trigger me but it really is the eating thing and then other repetitive sounds also low sounds i can't bear that bass sounds kind of thing yeah or like sitting in my house and what is that noise what is that what is that and the other thing that drives me mad is oh my god there is some so this is yeah it's a visual and a sound thing together that I get enraged like i have to walk away i have to get up and walk away when the tv picture is out of sync with the sound right and i don't know if that was i kept thinking like oh maybe it's because of my hearing loss and maybe all these years i've been doing more compensating than i thought through lip reading And when that is out of sync, it drives me a bit mad. More than a bit mad. But maybe it's a misophonia, you know, thing. Maybe it's, you know.
Unknown Speaker [41:32]: The sensory, whatever the sensory thing is. Yeah. Yeah. Fascinating. Yeah. That also irks me as well. But it comes up a lot in our, you know, modern streaming culture. Not everything's in sync all the time.
Unknown Speaker [41:48]: Yeah, it drives me mad, especially if I'm getting ready to just relax and have an evening and then there's something that's out of sync. And then I get inflamed that I look over at my husband and I say, is that not bothering you? And he's like, what? It's out of sync and he doesn't even see it? you know, it can be very subtle. We had some problems with our TV and our sound bar and whatever technology around that. We had real problems where we had to, you know, like do a lot of troubleshooting where there was real, real out of sync problem. But sometimes there, yeah, like in the streaming world, sometimes there's this subtle lag that just, yeah, drives me mad.
Stacy [42:26]: Right, right, right.
Unknown Speaker [42:28]: No, fascinating. You know, Stacey, I know we have a hard stop in a little while, but so yeah, I kind of wanted to, didn't want to go too long here, but yeah, I mean, anything else you've been thinking about at this point? I know you haven't really had a chance other than your close friends to talk about it. Anything else you want to share about your experiences or even questions for me?
Unknown Speaker [42:55]: Yeah, I wonder what you think is going on with this. You know, what the... I think at my age now, I always have curiosity about what is happening with my mind and my body and try to do the best I can to do my due diligence and adjust for those things or treat those things or get professionals in to treat them. But it seems to be in all the research I've done is that for now, there hasn't been a lot of money thrown at studying this. And so there aren't a lot of thoughts about treatment. But I wonder, you know, if you have any tips or tricks or what you found or if you know of any studies that would be helpful to me, you, others that could have hopeful treatment for this, because the psychological part of it is a challenge.
Stacy [43:55]: Yeah.
Unknown Speaker [43:56]: No, that's a great, great question. You're right, there hasn't been a lot. There's really only like one $10 million fund that is kind of giving the most, by far the most amount of money to various studies. And yeah, I get to see a lot of those. I helped write a book with Dr. Jay Gregory at Oxford about misophonia, kind of a self-help book. Wow, great. It came out a couple of years ago. And that's kind of very, very, more I guess kind of, yeah, the CBT focused, kind of what to do, how to think about, how to reframe what you're feeling. It's called Sounds Like Misophonia is the name of the book. You'll see my name on the cover, but Dr. Jane Gregory, if you want to search for that. That'd be an interesting one to get. That was really the first book published by a major publisher on this phone. It's by Bloomsbury. Everything else has been self-published. So, um, yeah, so I mean that, and a lot of the, um, treatments, uh, studies, or at least the mainstream ones are kind of CBT focused, focused around how to deal with the sounds in the, in the moment, kind of how to reframe them, reframe what you're thinking, uh, to avoid going into kind of like a, you know, that the misophonia death spiral. But, um, I'm, I'm interested in that. I'm also interested in kind of some of the stuff we, we talked about revolving around, uh, You know, the patterns I've seen as to kind of what happened growing up, you know, as we're growing up, we're young humans. We have, like you alluded to, like we have millions of years of a genetic background. There's also the real phenomena of epigenetics, which is kind of how, you know, things can be passed down from your immediate predecessors, like a bipolar father or just anything that can happen in a sort of small, de-traumatic way. either to yourself or to a parent or grandparent, that gets all rolled in with what's happening in the environment. And as a child, if you were maybe not, maybe you experienced things like, you know, for example, like you did, like I have had and like many others have had. maybe it's not processed completely and your body needs to get ready for the next experience so it's going to naturally look at its tools and one of them one of the strongest ones is hearing hearing is the hardest sense i think to to block right so it's the best thing to kind of give you advanced warning of something you can't you can shut your ears but you can't not hear some something you can't like not feel that you know um through that sense that you cannot touch something, you cannot eat something, you cannot smell something. But hearing is kind of one of the best warning signs. So I feel there's something there that needs to be studied. I don't think anyone is studying it in a way that I find satisfactory. And so I think I'm interested in root causes of things because I think if we can... And there are, you know, therapists that focus on that. How do we, how do we process that old trauma in a way that can kind of like take away the, that danger feeling that we now, that has carried with us into adulthood. So that's my, well, that's not a bad summary.
Unknown Speaker [47:30]: That was great.
Unknown Speaker [47:34]: So yeah, hopefully that helps. And I think there are, by the way, I think this year there are, I know of at least one other book that's coming out that is going to lead more into what I just talked about by someone who's been working with misophonic patients for years. So keep an ear out. I'll keep you posted too.
Unknown Speaker [47:57]: No pun intended, y'all.
Unknown Speaker [47:59]: A lot of puns. But yeah, I don't know. Unless you have anything else to share, I want to say thanks for coming on and sharing a lot of this. I know you haven't talked to a lot of people and thanks for being so open with some personal stories. I think it's going to help a lot of people.
Unknown Speaker [48:19]: Thank you so much. I sure hope it helps. I think I spent a lot of time, again, not wrong about other people's inconsideration, which is a heavy deal for me for sure.
Unknown Speaker [48:29]: Let's be clear. Some people are not concerned.
Unknown Speaker [48:32]: Yeah, not wrong for sure, but it has plagued me. And I think that, you know, the misophonia is a big contributor to that. And that's the first reaction to this is someone else being inconsiderate. And how dare they? Me being, you know, leading with caring about people and, you know, consideration being a high value of mine. But no need to suffer in silence. Again, no pun intended. There are plenty of us out here.
Stacy [49:00]: Yeah, yeah, very true.
Unknown Speaker [49:02]: All right. Thank you so much.
Unknown Speaker [49:05]: Thanks again, Stacey. Fascinating chat from the personal stories of relationships with partners and family members to that fascinating memory of the Berkeley study in the 80s. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at missafoneypodcast.com or go to the website missafoneypodcast.com. It's even easier. just to send a message on Instagram at MrFunnyPodcast. You can follow there or on Facebook at MrFunnyPodcast and on X's MrFunny Show. Support the show by visiting Patreon at patreon.com slash MrFunnyPodcast. Theme music, as always, is by Moby. Until next week, wishing you peace and good luck.
Unknown Speaker [50:22]: Thank you.