Jay - Journey of coping with misophonia and family dynamics.

S6 E20 - 1/12/2023
Jay shares a deeply personal journey with misophonia, detailing how it has affected relationships, particularly with their mother, who was emotionally abusive and dismissed Jay's condition. Jay reveals how their triggers worsened over time, especially in situations where they couldn't escape, like in a car with their gum-chewing mother. Despite the struggles with their family and the fear of being stigmatized, Jay has never disclosed their misophonia to friends or sought professional accommodations for it in educational settings. The isolation felt from coping with misophonia alone was profound until Jay discovered online communities, which brought some solace. Jay discusses the impact of working remotely and pursuing a degree in psychology, considering whether to focus on misophonia. The conversation concludes with Jay expressing hope that by sharing their story, it will help others feel less alone and foster a sense of community among those dealing with misophonia.


Adeel [0:01]: Welcome to the Misophonia podcast. This is season 6, episode 20. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Jay. I thought this was an amazing story because it really symbolizes how little Misophonia is respected in society. See, Jay's mom is a therapist, yet she used Jay's misophonia as a weapon against her growing up, tormenting her during their arguments. I'll let that sink in for a second because you'll hear a lot more about it in our conversation. We also talk about what it was like to get her first office job, why she hasn't told anyone about her misophonia, except her now fiancé, and we talk a bit about how she approached that conversation. But mostly we talk a lot about her mom. And, you know, this is actually also one of my favorite conversations because we talk about gaslighting a lot and how we misophones are gaslit for how we feel and our feelings are minimized, dismissed, and misunderstood without ever being given any benefit of the doubt. As always, let me know what you think. You can reach out by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. And as I always say, wherever you listen to the show, if you can leave a quick review or rating, it'll help us get up in the algorithms and reach more misophones. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about it at patreon.com slash misophonia podcast. All right. Here's my conversation with Jay. Jay, welcome to the podcast. Good to have you here.

Jay [1:42]: Thank you. It's good to be here.

Adeel [1:45]: So yeah, let's just ease into maybe just kind of like, whereabouts are you located?

Jay [1:51]: I am in San Diego, California. I was born and raised here. I've never, unfortunately, I've never lived anywhere else. But yeah, that's where I am.

Adeel [2:02]: and uh yeah so i i guess you i we were talking a little bit earlier you're pretty new to the misophonic community um and how did you well i guess yeah how did you know but what did you learn about it when you learned that it had a name what kind of led you to that and what happened around that time uh as far as like finding the community or finding out about misophonia well let's start with finding out about misophonia yeah

Jay [2:27]: um so misophonia i actually first heard the word when i was a teenager i think i was like 14 or 15 years old um my mom is actually a licensed marriage and family therapist and she i had had trouble with what we found out later was misophonia my entire life and she just googled the symptoms one day and was like voila this is what you have

Adeel [2:57]: Okay. And this is when you were a teenager.

Jay [3:00]: Yeah. Yeah. But I had been struggling with the symptoms of it. I mean, honestly, as far back as I can remember, like even when I was know a very small child i remember having real problems with you know things like people chewing gum or smacking their lips when they're eating or even sometimes like people singing but real small child do you know around which age or just kind of as far as back as far back as you can remember um definitely earlier than the age of six because my younger brother was born when i was about seven And I was already having issues then that I can recall. And I have a sense that it had been going on for a while. So I honestly couldn't give you an age, but definitely before the age of six.

Adeel [3:45]: And around that time, so yeah, you said like the usual kind of chewing mouth sounds, things like that.

Jay [3:52]: Yeah, like off-key singing.

Adeel [3:54]: Are you a singer or musician, by the way? No, you are.

Jay [4:00]: Not by trade or anything. It's just sort of a casual one. I played piano for well over a decade. I've done Suzuki violin. I play guitar on occasion. I do like to sing. I'm just not good at it. But I come from a musical family.

Adeel [4:16]: Gotcha. By trade, musical family?

Jay [4:21]: Yeah, my dad was first chair trumpet in the symphony here for like 30 years.

Adeel [4:26]: Wow. Okay. Yeah. So how did, I'm assuming the home family members were kind of first triggers. I would imagine what was their, and correct me if I'm wrong, but then what was their reactions to you as you were, and how was she, I should ask first, how were you reacting? Like, how were you expressing yourself at that early, early age?

Jay [4:53]: Back then, I didn't I obviously didn't understand what was going on. And, you know, now looking back, I can say with certainty that like my fight or flight response was triggered, as I know it's triggered for a lot of people. And so I would react like I would feel like this weird pit in my chest. I would start to feel like angry at the sound going on. And or that I needed to get away as quickly as possible. So I remember like covering my ears. I remember begging my my mom to stop chewing gum or asking her to stop singing, asking my dad to like not chew with his mouth open and stuff. And It wasn't always in a very, you know, polite, polite manner. A lot of times it was very frustrated because I would, you know, I had a sense that this wasn't like something that you do. And so I would try to like stick it out for as long as I possibly could, but then it would just boil over at a certain point. So I would speak a lot of times out of frustration.

Adeel [5:54]: How did your family members react?

Jay [5:57]: Not well. I don't think anybody's family members react well. Am I right?

Adeel [6:04]: Yeah, right. Well, that's where they're kind of the, you know, the, all that, that shame and that, that real, that kind of like bottled things, bottling things up that they kind of just kind of keeps coming at us starts. Did you start to feel that kind of like, feel kind of guilty? I shouldn't be feeling like this.

Jay [6:26]: Oh, absolutely. Immediately. Because I was told, you know, that is not a normal thing to ask. Don't ask it again. That is your problem, not my problem. Do not ask us again.

Adeel [6:39]: And this is even when your mom was an LMFT therapist, right?

Jay [6:46]: Oh, yes, there's a whole thing there.

Adeel [6:48]: Okay. Let's crack that open. That sounds interesting.

Jay [6:54]: Oh, boy, you're just like my therapist.

Adeel [6:58]: Yeah, well, just to remind the audience, I am not a therapist, but I like to kind of like crack things like this open. Well, I mean, we'll get to it when we get to it. But as you were growing up, were triggers starting to multiply? Were they starting to get into school and whatnot?

Jay [7:14]: yeah so i definitely i don't know that i necessarily experienced like more triggers happening but the ones that did trigger me became worse uh initially it was just sort of like with the people closest to me and like if we went out to a store or something and somebody was popping and snapping gum i'd be irritated but like it wouldn't be horrific but then as the years went on and as I continued to keep the feelings bottled up inside it got worse and worse and you know going to elementary school kids don't really have like the best manners yet and so that was you know fairly difficult to deal with um in a quiet class if a kid was like sucking on a piece of candy or chewing gum again or eating or something like that it was very very difficult to to deal with and i would excuse myself to go to the bathroom often yeah okay because i wasn't i didn't feel empowered enough to ask somebody to stop you know yeah did you ever at some point start to tell people to kind of like tone it down or you just did not No, I actually I never have. I I throughout elementary school, middle school, high school, college, I've never asked a classmate not to. I internalize all of it, which is a failing of my own that I have to do. But I just I never, ever asked anybody else to I would just walk out of the classroom and stay out for as long as I felt was practicable or I would just sort of internally self-destruct.

Adeel [8:51]: Yeah, well, you're not alone there. I mean, we've internalized... I'll just generalize and say society has kind of put us to the bottom of the priority list of things to worry about. Just before we leave kind of the early years, was there anything happening around in your early childhood that may have been kind of difficult? I don't know, like stresses, deaths in the family or moving around? Well, you said you've always lived in San Diego and just any, I don't know, anything you remember? Anything been difficult over those?

Jay [9:23]: Not particularly. I mean, generally speaking, I had a fairly good childhood. I mean, I, my mom and I didn't really have a strained relationship until I was in my teen years. So before then it was it was honestly okay. We moved to a different house when I was like about eight years old. My younger brother was born when I was seven. I did have I think one of my grandparents died around when I was 10. But, you know, honestly, it really, you know, it wasn't, yeah, yeah. It wasn't anything horrifically traumatic. You know, I, I wasn't, I didn't experience any sort of traumas back then. It was generally very good childhood.

Adeel [10:07]: And then those teenage years with your, was it, do you think it was like kind of misophonia related that you were starting to butt heads maybe with your, with your mom?

Jay [10:22]: No, not at all. That was an entirely separate issue, although it did exacerbate the issues that I was experiencing. Yeah, not at all. Oh, my God. It made things so much worse. And actually, my misophonia was weaponized. um as a way to gaslight me and to make me feel less than like for example my mom would be chewing gum and i would we'd be in a car so i would be unable to leave um and i would beg her to stop like i would be like screaming and crying like begging her to stop you know you know that feeling when it just goes on for that long and she would crinkle a piece of paper in her fingers and be like i'm not chewing gum you're crazy i'm just i'm just crinkling this paper in my hands You know, and it would just be used as a way to torment me for whatever reason. So it just made things exponentially worse.

Adeel [11:16]: Yeah. Wow. No, we're very familiar with the car environment. And yeah, that's crazy. I should cut that out. I should not say the word crazy. I hear that. Yeah. And again, I mean, not to, you know, in the heat of the moment, I want to make clear that we're not. parent blaming or anything, this is what happens. But again, this is, I mean, this is not a statement about your mom, but she was a therapist at this time, right, during teenage years. And I only mention that because even amongst skilled therapists, this was not known. It was not taken seriously. It still isn't really taken seriously. So it's not usually something that people are sensitive to.

Jay [12:00]: Exactly. And there's a whole side thing that goes along with the issues that I had with my mother. And yes, she has been a mental health professional for basically my entire life. But she has a lot of her own problems. And she and I had and she was extremely abusive towards me throughout my teen years. And honestly, up until I cut her out of my life at about 24 or so. And that is just an entirely separate issue from the misophonia and from the understanding of it and so the in this case the Misophonia was weaponized as a part of her abuse, but not necessarily just because of it being misophonia.

Adeel [12:40]: Yeah Gotcha. And any, I mean, you know, I'm not going to pry into that, but was there any roots of that taking root maybe from those early years when you were starting to develop Misophonia, do you think? Or no, it was completely separate, started later on?

Jay [13:01]: No, it definitely developed over time. It developed over time. Yeah, it went from, you know, you're not allowed to ask these questions of people. This is our environment, not yours to, you know, you're being you're being the big C. You're being crazy. Like you can't ask that stuff of people to know you're absolutely out of your mind. That's not happening. It's something else entirely and just gaslighting. So it's something that develops.

Adeel [13:28]: Yes, gaslighting. I guess what I meant was I was just curious if that side issue that resulted in you cutting out your mom. Oh, sorry. No, no, no. I'm trying to be sensitive about the question, but I'm just curious if there are any maybe roots or hints of that, whatever those issues from your early years, like before five kind of thing, or if it was something that just came later completely.

Jay [13:56]: It definitely did have roots. And I can say that because I'm in therapy and my therapist told me that. But, you know, I was describing my idyllic childhood and she was like, Jay, that sounds like abuse. So, you know, it just yes, it was definitely something that started in my early years, specifically around when my my younger brother was born. That was when my dynamic with my mother changed entirely and became a lot just we stopped being very close she much preferred to be close to my brother and i have an assumption you know i'm not personally a mental health professional but i have an assumption that that was because he was the more quote unquote normal one of the two of us interesting and then that was the normality obviously mr point is by part of it was there anything else that um she preferred him for over you yeah so he was a lot more um outgoing than i was i prefer i was you know sporty and on a lot of sport teams and stuff i actually did synchronized swimming for a number of years um but i would yeah it was super cool it was like yeah it was awesome i miss it every day but I would much have preferred to be in my little treehouse type deal or up in my bedroom just quietly reading a book. That was just my thing. And she thought that I should be more social and, you know, had a lot of. issues comparing me to what she was like when she was a kid, you know. So there were just these expectations placed upon me that I needed to be a certain way, kind of like a quintessential popular girl. And I just wasn't that. Whereas my younger brother was. He was a very social and fun kid. And that seemed to be more relatable to her.

Adeel [15:55]: Gotcha. Okay. Okay. Well, I guess, yeah, getting back to, yeah, I just want, thank you for doing that. I just want to get that, that kind of complete picture from, well, as complete as we could sum up in a few minutes, but get that lay of the land just because having, having heard a lot of interviews, you know, often there is, some issues with the parents that can result in walking on eggshells and just kind of like confusion and the brain kind of being trained to look out for anger or weird expectation issues. So just wanted to put it out there just for people listening. who might be able to relate um okay so and by the way did your did your brother um notice your um sounds like you probably would have noticed that you were having sound issues did he ever um i don't know use it against you too or or maybe support you or or not even notice yeah right i mean

Jay [16:57]: I don't know that he necessarily noticed because it was a problem I dealt with my whole life and thus his whole life. I think he only noticed when my mom started pointing it out to him as being unusual. he he never really used it against me not the way that my mom did uh he didn't really participate in in those issues like when i would be you know being gaslit in the car and stuff and being called names he didn't really participate in that but he certainly didn't stand up for me Which I didn't expect because he's, you know, seven years younger than I am. You know, he was a little kid. But yeah, he didn't really, you know, even as an adult, he has never stepped in about that.

Adeel [17:42]: Were you being called names related to misophonia?

Jay [17:45]: Oh, absolutely.

Adeel [17:46]: What kind of stuff, if you don't mind? We love to kind of hear what the others call us. Or at least I'm curious.

Jay [17:56]: Yeah, absolutely. I mean, it was mainly just a couple like it was mainly just being called crazy, very specifically being called crazy or like weird. I she would accuse me of being autistic, which, you know, why weaponize a mental health as a mental health professional? Like, it's so stupid. Yeah. She was like, you know, only autistic people are like this. And I was like, well, that's a weird thing to say, but OK. Wow. Okay. Yeah. Yeah. So mostly it was mostly revolved around mental health because that's her profession and that's what she knows.

Adeel [18:34]: Right. Okay. Um, and, and what about your, where was your dad in all this?

Jay [18:39]: Uh, so he, it was, so he and I had a better relationship for most of my life and we're actually very close now. But, um, prior to him, uh, divorcing my mom, he just divorced her actually a couple of years ago. Thank God. But, um, he, he didn't really step in and I, he told me later, I, I obviously don't know if this is the case. I have no way of verifying, but, um, he told me that he would have talks with her, you know, like, Hey, you're being pretty harsh on Jay. Like, shouldn't you like chill? And she would basically override him. She's a very strong, very strong person. And she would override him saying, you know, I'm the mental health professional, I know what I'm doing, you have no right to question me, etc. So in a way, it was also abusive of him, because he just sort of stepped back and just enabled her to do whatever she wanted.

Adeel [19:32]: yeah gotcha okay interesting um okay so you right okay where are we now we're again i guess like high school college and in and then how about let's just talk about me friends how how did uh did you it sounds like you didn't mention to anybody but i'm curious nobody yeah nobody absolutely not

Jay [19:57]: your friends trigger you at all maybe start there or um oh yeah of course i had one friend in particular who you know unabashedly loved to chew gum which to me is the worst it's the worst trigger for me i mean just i i can't stand it it just kills me every time and i You know, I never wanted to hurt her feelings or, you know, make her feel bad or anything. So I never said anything to her. And I also I never I never told anybody I have misophonia ever until probably the last like four or five years, maybe just because I had been so stigmatized my entire life and used as a weapon against me that I just never felt safe to. So none of my friends knew. All of my friends triggered me constantly, but I never said anything about it because I didn't want to invite that drama.

Adeel [20:52]: Yeah. How did you deal with it with your friends? Was it like the flight situation?

Jay [20:59]: Yeah. So when possible, I would leave. um if i could uh i i oftentimes would clench my fists so hard that my nails would would cut my palms um i would you know pinch my thigh to distract me and bite the inside of my mouth or my tongue or my lip um just anything anything to distract me so that i wouldn't do or say anything

Adeel [21:24]: just to just feel something different feels yeah different kind of pain um yeah did you i don't know bring headphones or earbuds or anything to situations or um was it what was some of your other coping mechanisms if you had any

Jay [21:39]: yeah i i definitely you know i was pretty attached to my my headphones i'm gonna age myself a little bit i loved my ipod um and you know my walkman and my disc mint in the 80s oh my god i i had a pretty sick disc man for a long time and it finally just it dropped out of my hands one day and died and i've never been sadder that was like the worst day of my life but um yeah so i would take that with me and i would have earbuds and i would get noise cancelling ones if i could afford them uh you know on babysitting money and stuff like that um but i you know in social situations i tried really hard not to use them because i wanted to be present i wanted to hang out with my friends um so it was mostly flight and fight with myself yeah yeah what about like uh what about work and stuff work situations so working actually wasn't that bad i you know i worked basic jobs throughout my my teens and 20s you know like retail um i only recently started working at an actual office job i'm actually a paralegal and i started doing that within the last five years Um, and that was extremely difficult, you know, cause you have the deathly quiet corporate office, uh, and every sound is amplified. And I discovered that if I just wear tiny wireless earbuds, nobody notices and I can just listen to podcasts or music and no one will say anything. Um, for the most part, you know, some people, when they would come up to talk to me, would have to like wave in my face to get my attention. Um, but yeah. other than that they you know they didn't really care i work with a bunch of attorneys who really only care about my work product so as long as i'm producing good work they don't really mind if i wear earbuds to do it you know right yeah absolutely uh yeah that's that's one of the uh

Adeel [23:39]: Yeah, one of the good things about a lot of these, well, even this work from, are you actually working from home now maybe since COVID or are you still going to offices? Yeah.

Jay [23:48]: No, I've been lucky enough to be able to continue working from home and it's been awesome. You know, like I haven't had to deal with any of the triggers in the office. I don't have to go out to lunches anymore with people and sit there and silently die inside. Oh, God.

Adeel [24:04]: I always wondered why I did not like work lunches. This is long before I knew what Miss Phonia was. I did not like work lunches with my coworkers. I just thought they were always, I thought maybe I just thought they were boring, which they probably were too. Yeah, they are. But having to then, yeah, having to then like cringe, anticipate triggers and be bored just was just like hell. It's so much. That's why I never really got promoted.

Jay [24:31]: Yeah, it's been great working from home. And I'm actually finishing up my bachelor's degree at the same time. And I'm doing that remotely. And I like that is by far my favorite part of all of this, because being in quiet classrooms, especially during tests and exams and stuff. That was a nightmare. That was an absolute nightmare. And I never sought any sort of disability service or mental health disability service for that because I didn't think it counted. I didn't realize until recently I could have just gotten a note from a therapist.

Adeel [25:07]: You don't even need a note. It's part of the ADA. You can get accommodations without having to get a doctor's note.

Jay [25:20]: There you go. That's amazing. I so wish I had known about that. I would have just worn giant sound-canceling headphones every day, and nobody could have said anything.

Adeel [25:29]: Yeah, most people don't know about that, but that is true. Yeah, that's great. And what did you, what are you, can I ask, what are you getting your degree in? I'm just curious, like, you know, are you thinking, it sounds like you're... you've had some decent work experiences. Are you thinking, is misappointing a part of your thinking as you're planning your next career move and whatnot?

Jay [25:51]: Totally. Yeah, no. So I actually, I have a couple of associate's degrees already. I have one in social and behavioral sciences, another in German. I also have a German language certificate, but my bachelor's ironically is in psychology.

Adeel [26:09]: Maybe not ironically. Are you going to change the world of Misophonia with this degree, hopefully? I wish.

Jay [26:19]: We'll see. I mean, I kind of dig the little niche I've worked myself into at my corporate job. But I mean, maybe I can use that to fund a master's degree and maybe I can do some research.

Adeel [26:33]: Yeah, no, I just, I'm just curious if misophonia kind of played a role in helping you decide to pursue this particular degree.

Jay [26:42]: Yeah, I mean, yes and no. I've always been very interested in psychology. I don't really think about misophonia a lot because I try not to. The more I think about it, the worse the triggers are for me. So maybe not intentionally, maybe subconsciously I did.

Adeel [27:02]: Yeah, no, you make a good point. I mean, a lot of us, you know, we feel it so intensely during a trigger. The rest of the time, we really don't want to think about it. I mean, I do because I have to do the podcast. But like, you know, it's yeah, it's something we generally don't want to think about. So that's interesting. But yeah, obviously, you seem to have an interest in this. And maybe you'll make up for your... your mom's feelings in the psychology arena. I'm sure she did great work for some people, but I don't want to criticize anybody.

Jay [27:37]: She's a wonderful therapist, yes. Yes, she's a great therapist, just not the best mom.

Adeel [27:43]: Not for misophonia. No. I won't comment on her mothering, but it sounds like there were some issues there. Definitely not a misophonia, not an ally of misophonia. Not at all. okay so um let's let's see okay so yeah then i guess then you said yeah i guess around four or five years ago you heard it so that was okay so that was your mom googling it so this is before you cut her off it sounds like yes so she actually googled it when i was a young teenager probably 14 or 15 years old yeah right right right

Jay [28:22]: yeah and she presented it to me and was like i found out what you have and it has a name and stuff and i was like oh my god that's crazy and then she was like yeah never tell anybody about it this is a secret and i was like wonderful any uh any more any elaboration on that did she give did you tell her or was it just the obvious that she was embarrassed by it probably or that you that you have it or she just didn't think much of it Oh, absolutely. It was a, you know, part of it was a reflection of her, of course, you know, that, that her daughter has something, has an issue and it's, you know, potentially a mental health issue. God forbid.

Adeel [29:04]: Oh, so it could have been anything like she just didn't, didn't want to project any weakness of her kids to the outside world.

Jay [29:15]: yeah well not necessarily weakness of her kids but just anything that made her look less than perfect was absolutely unacceptable um additionally because so little was known about it and is known about it you know that's always very scary and she didn't want me to be a medical mystery um she needed me to be absolutely perfect so yeah a lot of it was because it reflected badly on her She used again the word crazy. You know, this is what crazy people have. This makes you sound crazy. So you can't tell anybody about it.

Adeel [29:48]: okay um gee wow okay so this is i'm so sorry yeah no this is uh i'm smiling at words no i shouldn't be smiling this is so uh yeah it's just interesting i mean a mom and mental health professional and but you know it's this is what we deal with i mean this is what we do uh wow okay so and then and then then eventually um

Jay [30:13]: um yeah like you said it's not wasn't misphonia related completely but you cut her out of your life so there's no communication with your mom anymore uh we're currently low contact very very very low contact yeah but for a number of years i want to say so that was probably when i was like 24 so like um probably for about three years straight i just did i did not speak to her at all um and i only opened up a little bit with her because i felt like i should give it the old college try you know there you go you know just like really you know really stick my foot in the door and also because you know all i've ever wanted is for my mom to love me that's all i've ever wanted and i would die inside if i didn't at least give that like the smallest chance and uh i know a lot of people view me being low contact with her as kind of a weakness you know like like jay you really shouldn't be letting her back into your life but uh it it does something for me mentally you know i can look back on you it's not something you wanted but you had to do the the cutting her off yeah okay absolutely yeah no it wasn't i did not want to do it but i had to for my own mental health and i also had to allow like some low contact for a lot of reasons but mainly because if you know the world ended tomorrow i wanted i want to know that i did what i could to salvage any any vestiges of of of this relationship gotcha okay um and so i guess

Adeel [31:52]: How's your, okay, so how's your misophonia been kind of, I guess, recently? I mean, it sounds like work and school are pretty, pretty remote. You know, you found out how to name, you know, quote unquote, thanks to your mom. But you said also kind of in our little pre pre roll here that you just found out in the past year or so that there was a community. Are you starting to learn more about Missophonia? Is it is it ramping up in its problems for you or. I guess, yeah, it's been recently.

Jay [32:30]: I'm dipping my toes, so I i started talking and acknowledging that i have misophonia within the last like five or seven years something like that um i currently i'm i'm engaged and my fiance is very supportive i told him super early on in the relationship that you know this is these are the issues that i have these are my triggers please don't mess with me yeah so you told him but you said you don't you otherwise you haven't been told anybody Yeah, not really too many other people. I only told him because I felt safe. He was the first person that I really felt safe telling that to because as you might imagine, I have an aversion to mental health professionals, and I don't really have a lot of them in my life. So I hadn't really told anybody else but We were getting serious and I wanted to do our relationship long term. But I just I could not take another day of pretending that I wasn't triggered by stuff when I was. I just I couldn't do it. I couldn't pretend anymore. And, you know, it was it had already destroyed my mental health for decades. I and I needed to have someone and somewhere that I could be. not triggered and be myself and just have like a normal day.

Adeel [33:51]: How did you approach that initial conversation? Because I'm sure a lot of people are in a similar situation.

Jay [33:59]: Yeah, I mean, it was nerve wracking. Me personally, I just sort of jumped both feet in. So I word vomited all over him. You know, I came with a printout of what misophonia was and I sat him down and I said, I have this. Um, I haven't told you about it because I was scared and I was embarrassed, but this is what I have. This is what I feel when I am triggered by sounds. These are the sounds that trigger me. And then I got even more specific and I said, these are the sounds that you make that trigger me. Um, and I can't live like that. So if this is, you know, if you can like accommodate me with this and if you can work with me on this and try, um, to be understanding and to understand that I am not reacting to sounds that you make because I don't like you or because I am trying to control you or anything. I don't have any, any control over my reaction. If you can understand that, then we can move forward together. You know what I mean?

Adeel [35:02]: And how was his reaction there?

Jay [35:06]: He was very supportive. He, He was confused at first. He had never... Wow, what could possibly be... I know, right? What could possibly be confusing about any of that? But he had never heard of it, of course. Who has?

Adeel [35:22]: Right, right, right.

Jay [35:24]: So he asked for clarification. But other than that, he was really, really supportive and still is. Like, he absolutely will not chew gum. He won't do it. So that's been very helpful. And anytime I tell him like, hey, that's triggering me. He might get a little irritated sometimes if he's like grumpy and tired. He's like, I'm not doing it on purpose. And I'm like, I know. I know. I'm so sorry. But other than that, he's been great.

Adeel [35:53]: and then your current therapist not wanting to disturb the therapist patient uh confidence but like did your therapist know as any therapist that you've had know what misophonia is other than your mom the mom um no like um

Jay [36:14]: I've only had like two, three therapists, I think, in my life. Two of them were for a period of less than a month and I got freaked out and left. But I did mention misophonia to my current therapist who I've been seeing for a few months and she's never heard of it. um i got to educate her and tell her about it um nobody i i've spoken to a couple mental health professionals aside from her um just in a in a neutral situation like i happened to meet them for lunch or dinner or something and they were like a friend of a friend nobody's ever heard of it nobody's heard of it at all

Adeel [36:58]: wow it's funny well not funny but I mean the therapists that I know that know about misophonia that's all they do now because they're so overwhelmed because these other jokers don't have never heard of misophonia so it's like the and I mean jokers as a joke because there's so much demand and no one knows about it that the people who do know about it they are like overflowing with people and another thing too is that I don't think that they've really

Jay [37:28]: I know it's not in the DSM and that's because it's not it's not necessarily a psychiatric disorder. And that, I think, is part of the problem is that they don't know what it is. I've heard people tout it as a psychiatric problem, which is absolutely off base. And those people should be catapulted into the sun. No violence intended. I've heard it touted.

Adeel [37:49]: You can talk about violence.

Unknown Speaker [37:51]: It's fine.

Adeel [37:52]: Just don't act on it.

Jay [37:54]: I will never catapult anybody into the sun. I can promise you that. But, you know, it's been a psychiatric disorder. I've heard people tell me it's an audiological disorder, which I absolutely disagree with because you can, I'm sure you can relate. I'm triggered by the mere thought of my triggers. If I have on head, sorry, go ahead.

Adeel [38:14]: I probably came in prematurely, but yeah, I mean, it's not just audio because as you might have is visual triggers that come into play. And then there's also all the senses. So, you know, my current thinking is, I think, the sound part is kind of more of a canary in the coal mine. Because I was thinking about this recently, and I'm probably going to sound like a broken record on the recent episodes, but like, feel like for me like sound is the hardest um sense to kind of uh hide from because you can close your eyes to to not see things and obviously like touch taste and smell are very you know personal you can just not engage in those but like hearing like even if you block your ears unless you've got like amazing noise cancelling headphones or you're somewhere else like you can't really get away from a sound And so if your brain has been somehow learned to react to sounds as being some kind of a danger, that's going to be the first thing you're going to notice, I think. and then visuals will come after that usually and then other senses but i'm sorry getting back to you i think i was trying to reinforce your point about it not just being an audio thing i yeah i totally agree with that i think it's much more than ultimately it's much more than a sound issue

Jay [39:39]: It is. And I absolutely agree with you because, yeah, very much so. And I think that this definitely like I've heard it also called a neurological disorder, which I agree with, because I mean, if you think about this, like what you were just saying, like you can close your eyes to sights, but, you know, even if you have on incredible noise canceling headphones, you can usually still hear something. Most people can hear a lot better than they can see most. Not all, you know, but. It really goes to show that our fight or flight response is. like hyperactive, you know, because that I think is something that humans and the primates that we evolved from and everything have relied on in the past to tell them when there's danger, right? You hear a sound, you go, oh, my God, that is scary. Do I fight? Do I run? You know, and for us, it's sort of devolved into an everyday into an everyday issue. But I do think very, very sincerely that this is a neurological problem. And I think that once they I say the great they, I mean like medical community. Once they actually classify misophonia and take an interest in it, then we can start actually maybe doing something about it and seeing if there's anything we can do to alleviate symptoms. Because as it stands right now, it's just sort of a free floating like phobia, you know, like arachnophobia. Like there's not really treatment for that because it's just a phobia. And that's sort of how they're treating misophonia. you know, as like a personal problem rather than an actual disorder.

Adeel [41:15]: Yeah, yeah. It has been, the current definition, the so-called consensus definition that was released in the past year does officially call it a disorder, but that's, you know, that's taken years to get to that point to even call it officially that. Um, and yeah, I mean, I, I know there's, it's, it's an interesting time because I think, um, I think there's still debate raging as to how, like, are you condemned by being born in, born with it and there's no way out of it. I feel like there's something, there, there is some, I feel like there is some, um, uh, uh, kind of a tug of war between well there's a back and there's a i think there's a back and forth between like um this a um uh maybe a genetic or or um neurological component to it but then it also can be flipped on or or left dormant by your environment for so for example things like things that happen in your environment as you're growing up, I feel like there is some kind of a play between those two. But I think there needs to be a lot more research to figure that out. But I'm personally hearing a lot of common-ish stories of people having similar situations, like something difficult happening um early in childhood whether it's a single event or a chronic parental anger kind of issue um and so i feel like the whole walking on eggshells experience seems to be quite common and i feel like maybe that is activating something that we are predisposed to our brains are maybe predisposed to um turning on

Jay [42:59]: so yeah yeah like maybe because we're being forced to walk on eggshells it's making us more like it's activating our fight or flight response even further because we're being taught like this is a bad thing you shouldn't be doing this if you do this expect an angry response you know and it's just making everything worse and i'd also be interested too if this is like if this truly gets classified as like a brain disorder Um, I'd be interested too, to see if anybody had, or how many of us had any type of head injuries as children. Cause I know, you know, kids run into stuff constantly, you know? And I wonder if there's just like a, a particular spot on your head where if you hit it too hard, like it just, it messes up with this, with that stimuli.

Adeel [43:43]: Good. If researchers are, uh, yeah, many different directions that they, that were, uh, yeah, that we could be going. yeah there's so much to learn um so interesting okay and so you're um and so your current therapist they're seeing you educated them on misophonia have they tried to address it at all or is there just enough other stuff to get you uh to be honest um she just sort of left it by the wayside i don't think that that was intentional i just i

Jay [44:20]: she probably looked it up and was like, well, I don't think there's much I can do there as a therapist. So I will wash my hands of that, you know, and there are other things going on that we want to focus on. But yeah, aside from when I mentioned it the first time and then followed up later and asked her if she had looked more into it. And she said, yes, aside from that, we haven't talked about it at all.

Adeel [44:42]: Gotcha. And I guess not to prior, not, not to kind of rank things, but, you know, compared to, you know, the other stuff that you're talking about, would you, in your mind, would you put misophonia kind of roughly near the top of like the things that you, that you, that kind of bother you?

Jay [45:02]: Yes and no. If I think about it in a, if I think about it in an unbiased way, then yes, absolutely. And the reason I say no is because I have dealt with it every single day of my conscious life. And so at that point, It's just become normal for me. And so I don't really think of it as like this freestanding issue that I could potentially work on. You know, as far as my as far as I'm concerned, I'm doomed to like this is it. This is what I have and I have it forever. So I I generally don't even rank it among issues that I'm personally having because it's just always there and it's always going to be.

Adeel [45:45]: Yeah, I mean, you've kind of expressed what I think a lot of feel, which is, I mean, honestly, kind of sad, right? That we just, like, this giant 800-pound gorilla in the room, we've kind of learned to just shove it into a tiny, tiny hole. And we've kind of, even around a professional, we're like, well... there's probably no way I deal with this. This is normal for me now. And so I'm just going to keep internalizing it. I mean, if that therapist maybe had had some ideas or had known about it, obviously you'd probably want to, and they would probably want to help you address it. But in the absence of that, yeah, we just, to us, it's like just another day dealing with it on our own, right?

Jay [46:28]: Absolutely. And I liken it kind of to because I also have chronic migraines and I liken it to having a headache every single day of your entire life. You know, most people, they get a headache. They take some ibuprofen, some Tylenol, Motrin, whatever, whatever your brand of choice is. You know, you take it and you move on with your life. And if you have a week where you have a headache after headache after headache, you know, it's annoying. And you start to like question like, oh, maybe there's something deeper wrong. But if you have a headache every single day of your life, you're not going to take meds every single day if it's not something dire, right? You just move on with your life and get used to it because you have to live. And that's sort of, I think, what everyone with misophonia has done is they've just crammed it into the back of their head and never sought any relief because it just feels so chronic and so lifelong.

Adeel [47:17]: Yeah, so interesting. Okay. Any, yeah, I guess we're getting into, yeah, about, well, north of, north of our 40 minutes here. So I kind of want to maybe get, talk about the present and maybe we can get into kind of like other things you've learned or final words kind of things. But now that you're, sounds like you're, You're bringing maybe your mom back into the picture. I'm just curious, these folks that you've grown up with, do you mention misophonia at all to your family members now? No.

Jay [47:57]: No, not at all.

Adeel [47:58]: What about extended family members? Anybody else? It sounds like nobody.

Jay [48:03]: Yeah, definitely nobody. I know my mom has talked about it too. I really only have extended family on my mom's side. My father only had one brother and they were not close. So I'm not really close to the cousins on that side. And they're very, very few regardless. Whereas my mom's side, there's a ton, you know, there's like There's so many people on my mom's side of the family and I know she's talked to them about it, but I never have. Um, and I don't have a very close relationship with them anyway. Um, as they, they live clear across the other, on the other side of the continent. Um, and so I never really had a chance to have a super close relationship with them. And I honestly, once my mom had already told me that she had told everybody that I have misophonia, I felt such shame. Like I never wanted to bring it up again.

Adeel [48:54]: Why did she tell them? Because she said that she didn't want to talk about it with anybody.

Jay [48:59]: I know, I know. It's really, she's full of contradictions, my mom. It wasn't anything kind, to be sure. It was more of like, you know, oh, I'm such a martyr. You know, my daughter's got this and it's making her crazy and look at all this work that I'm doing and having to do to mitigate it. And it was sort of more of a complaining sesh.

Adeel [49:22]: Yeah, it was more about her. yes absolutely everything is not to sound salty or anything but no no no saltiness none at all okay okay and uh what about your um fiance's family do they do they know about it

Jay [49:43]: no not at all and for very different reasons my fiance is um a person of color not he's not african-american i i don't want to say too much about him to identify him or anything but he is not an american citizen by birth he's from a completely different country his family is from a completely different culture mental health is not recognized as an actual issue there as you know as it is in a lot of other countries um and so anything related to mental health or struggles of that nature anything that could be even misconstrued as mental health is just not talked about and so just out of respect for that i you know obviously i'm not going to just you know thrust my 800 pound gorilla as you said upon them you know they wouldn't understand it and they wouldn't appreciate it and it's just you know it would just make our very good relationship a little weird. You know, it would colour things for them. And I don't want to... I just don't have the skill set to be able to broach that, so I'm not going to.

Adeel [50:47]: Yeah, yeah, yeah. I tell music films, just do things on your own terms. You know, we've dealt with... we've dealt with this every day we've dealt with other people's reactions every day for our entire lives so i think once we recognize what it is we should give ourselves the grace to kind of like you you know trust our instincts in how we do yeah yeah and honestly like using the royal we here like we have dealt with enough like if you need to avoid that conversation because you're tired of having it like do just don't have the conversation that's fine no i i do that even though i have this podcast i'm like i'm not i i don't i'm i don't have time to like be mr public awareness to people who don't you know have misophonia i'm more about just helping us heal each other and share our own stories and share tips like this where you know just yeah if you don't want to have the conversation one day don't don't do it don't you we've we yeah the royal we have we've dealt with this more than enough and um Let's work on ourselves and get tips from each other and leave it at that.

Jay [51:59]: Yeah, honestly. And additionally, it's not our it's, you know, not to sound harsh or anything, but it's not our responsibility to educate every single person on the planet about misophonia. You know, we can educate as many people as we want to. But as soon as you don't want to do it, it's OK to stop. You know, if someone is genuinely curious, they can Google it. We have the Google, you know, like they can look it up.

Adeel [52:20]: They don't look up an Instagram. Maybe it's in the Encyclopedia Britannica by now. Who knows? But yeah, there's. Yeah. or phone a friend. Yeah, that was interesting. Any other words of advice than to other misophones? It's like you haven't really talked to any other misophones, but you have opinions, so I'm curious. I have so many thoughts and opinions.

Jay [52:43]: Yeah, I really don't know anybody else who has misophonia at all. You're the first person I've spoken to who does, but I have a lot of very strong opinions, and I just like... I don't have too much else to say except like if something makes you uncomfortable, you know, like you can totally pull yourself out of that situation. Like if you're sitting at dinner and somebody is chewing really loud and it's making you extremely, extremely uncomfortable, you can just get up and go. Yeah. we i'm sure a lot of us are adults and even if we're not like we're allowed to have boundaries and like sure you don't have to be a jerk about it you know but you can get up and walk away and say i'm gonna need a minute if they don't know that you have misophonia and you don't want to tell them about it just you can excuse yourself to the bathroom as many times as you need to you know like it's none of their business why you need to get up and walk away just take care of yourself and I just don't want anybody to internalize it the way I did.

Adeel [53:36]: Honestly, any other condition, I might be exaggerating, but any other condition, even if you made up a freaking word, that would be taken more seriously than if you tried to explain what misophonia is.

Jay [53:49]: Yeah, because everyone's like, oh, it's just a pet peeve. Like, absolutely it is not. And it's not like you have control over your reaction to these sounds, you know? I totally agree with that. And just hearing that makes me so mad.

Adeel [54:04]: I don't want to make you feel mad. It should be camaraderie. we're on the same page do you um have you ever had i had uh had a couple job interviews in the past year or so and uh where the person interviewing me said something like oh i have i have a mild dysphonia i think i'm like oh come on you know i actually yeah absolutely you know what i'm gonna say a hard pass to this job and good luck to you but um you know one person did one of my i mean i don't want to judge anybody but it's like i i can tell no person that it was just like it kind of like wanted to everything has to kind of be i could tell it was like everything would have to be about them and so of course they just want to feel like they know everything

Jay [54:55]: well and it's minimizing it right you know like if everybody has it then nobody does it's also it's similar to when people are like oh you know i have to make sure to clean my bathroom once a week because i have ocd it's like absolutely no you don't have ocd ocd is debilitating and you know what else is debilitating misophonia if you don't like certain sounds but you don't feel like you need to run out of the room or like tear your head off physically you don't have misophonia and you shouldn't be appropriating that

Adeel [55:24]: And it's not just because we are, you know, easily ticked off or something. It's not like a... It's different than like anger management or any other kind of like gross subversion or whatever. It's... like it's neurological slash um you know past experience um like you know i don't want to say i don't want to the word trauma is kind of a loaded term but it's it's you know it could be very much related to to to to something that uh traumatizing itself but but it could be related to to you know like we talked about earlier just other issues um stresses in the environment growing up which again i mean uh this doesn't necessarily have to lead to miss when it could lead to many other things specifically just happens to be one other thing um but it happens to be the one thing that right now here in 2022 it's still taken as a joke yeah absolutely and it's not it's like the least funny joke i've ever been told like this is not funny and it needs to stop um yeah okay so yeah any other i'm trying to see if we could explain any other any other your your opinions because i'm sure uh there's tons of people who are listening who probably like been googling a lot and um have you know obviously go through it and uh have amassed opinions like um when you um well i guess are you maybe on social media like are you following the community online like anywhere or

Jay [57:05]: I'm following a couple pages on Instagram at the moment. That's actually how I found you. I can't remember the name of the account, but it popped up and it was like, oh, this guy's doing podcasts about misophonia. And I was like, what?

Adeel [57:18]: He's this weirdo. Yeah. Why would you do that?

Jay [57:21]: Yeah. I was like, literally, why would you do that? What is wrong with you?

Adeel [57:25]: Yeah. That's kind of why I did it. I was like, it takes a special, well, I don't want to say special, but like, obviously these stories need to get out and, uh, and, you know, putting myself out there, like putting yourself out there, um, and sharing, like bothering to spend this much time on something that society takes as such a joke. Like it takes a certain type of personality because, oh, we're just ridiculed so much our entire lives. So I felt like, I think I have the, you know, personality to do it. Somebody has to do it. And so, but I think it's, I mean, it is helping a lot of people. The messages, not only people come on, but the messages they get from people who don't come on is pretty heartbreaking stuff. And so it's good to hear stories like yours, opinions like yours, because a lot of us have this debilitating thing and we've had similar experiences. And so the message I get from people saying that hearing these other stories completely changes their life or at least makes their past make sense is, I mean, what gets better than that?

Jay [58:33]: That's very interesting. Yeah. Yeah, it's having a community is always almost always an asset. And especially with something like this, because like you've mentioned a few times, like this is just something that everybody thinks is a freaking joke. And spending so many years thinking you're not normal and like you're all alone and stuff, it's depressing and you feel very isolated. And being able to tap into a community of people who understand exactly what you're going through is so valuable.

Adeel [59:05]: Yeah, yeah. Has it, well, I guess we should, yeah, maybe we should just start wrapping up soon. I was curious, like, the answer might be no, but has knowing that there's a community, just being able to kind of like go and hear other people's stories, has that kind of helped move the needle at all? Or, I don't know, given some kind of positive light on what you're experiencing?

Jay [59:29]: It made me feel good. good and bad i i was relieved to know that there were to see even just from these few instagram pages that i followed that there are a lot more people like me but it also broke my heart because nobody should have to feel this way like this is this is a tough a tough deck of cards we've been dealt and i just like yeah my heart just breaks for everybody that experiences true misophonia like it is it is the hardest thing i've ever dealt with um throughout my entire life and i've gone through a lot of stuff and You know, it just I I'm excited to see a lot more people reaching out and finding community in each other because I am always worried about other people's mental health, especially for something as chronic as this. And I just hope that. it helps people feel not so alone and to know that they have support from other people because i i never had that and i wouldn't wish that on my worst enemy um and i'm just i'm so excited to see people reaching out to each other but i'm just so sad that they have it yeah yeah well um yeah maybe let's leave it on that note um unless unless you have anything else else to share thanks uh jay for coming on and sharing everything here yeah of course and i i mean i guess if i leave anything behind i just you know if anybody is just now like finding out what misophonia is and or has found out what it is and is starting to explore what that means for them and like the community and stuff and has spent a lot of their life feeling abnormal or like an outsider alone like You're not abnormal. This is just your normal. And you can figure out coping mechanisms for it. And even better than that, you have a community that you can reach out to that will support you and help you through this. And that is just, you know.

Adeel [61:30]: best pot that's just the best thing honestly so lean into your community yeah i want to say yeah exactly so that that i want to i always want to emphasize that that the community is very um understanding and accepting because all the reasons that we talked about like that you know we've been beaten down mentally or told that we're idiots and crazy but um but also the weird thing I noticed and one reason why I started the podcast is because at these conventions I talked to when I meet people it didn't take much to feel like you really got really understood the person because we've had so many similar emotions and reactions and in some cases like like down to the situation experiences and so um almost is very surreal especially i mean even if you listen to a lot of these episodes how close some of our pasts were even though we're you know different people culturally or demographically or whatever and so uh yeah lean into the community you will quickly find people knock on wood you'll quickly find people that um that you share a lot in common with more than just misophonia yeah

Jay [62:41]: That's so important that knowing that you're not alone. I got to get to that convention.

Adeel [62:48]: You know what? I mean, it actually, this, it starts on the, this year starts on the 15th. It's online only. But if you go to, I don't know, you can Google it. Yeah, I'll Google it. um this will air probably after the convention but um i'll be doing um my talk on my less it's just me just going on for an hour about my thoughts and lessons from like talking to you know hundreds of people so cool yeah you know if there ever was a target demographic for a silent disco we're it

Jay [63:25]: i like if there's ever if there's another convention like with you know in in the physical world i highly highly vote for us to have a silent disco because that would be absolutely ideal for all of us yeah a silent disco or also like uh really loud shoot like my bloody valentine like really loud shoe games absolutely my bloody valentine yes or like afi or something yeah like just the loudest music possible

Adeel [63:52]: Oh, okay. It's so funny. I have dreamed about doing like a Misophonia music festival where maybe it might be kind of like a, this is aging ourselves, like a live age for mental health. But like, Misophonia is kind of like the main sponsor. And then all these bands come on to, you know, plug their, the more normal mental health conditions. But yeah, I kind of dreamed about eventually having a music, kind of a music festival. So.

Jay [64:20]: That would be amazing. I would absolutely attend.

Adeel [64:23]: Yeah. Yeah. Okay. Okay. I'll sign you up. Cool. Well, yeah, Jay. Yeah. This has been, this has been really fun and yeah, I'm glad you're part of the community now and thanks for sharing the stories. It's going to help a lot of people.

Jay [64:36]: Of course. Thanks for having me on. I really appreciate the opportunity to talk about it.

Adeel [64:41]: Thank you, Jay. It's great to have you here sharing this story and I hope you continue to be an active part of the community. 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 hellomissiphoniapodcast.com or go to the website, missiphoniapodcast.com. Easiest way to send a message is on Instagram at Missiphonia Podcast. Follow me there or Facebook at Missiphonia Podcast, Twitter with Missiphonia Show. Support the show by visiting the Patreon at patreon.com slash musicboypodcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [65:45]: Thank you. you