[00:00:00] Adeel: Jay, welcome to the podcast. Good to have you here.

[00:00:03] Jay: Thank you. It's good to be here.

[00:00:05] Adeel: Yeah, let's just ease into maybe just where whereabouts are you located?

[00:00:09] Jay: 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. And yeah. So I guess you, and we were talking a little bit earlier, you're pretty new to the community and how did yeah. How did you know, when did you learn about it?

When did you learn that it had a name? Who led you to that and what happened around that time?

As far as like finding the community or finding out about misophonia?

[00:00:39] Adeel: Let's start with funny out about misophonia. Yeah.

[00:00:41] Jay: So misophonia, I actually first heard the word when I was a teenager. I think I was like 14 or 15 years old.

My mom is actually a licensed marriage and family therapist. And she ba I 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

[00:01:07] Adeel: you have. Yeah. Okay. And this is when you were a teenager?

[00:01:11] Jay: Yeah. But I had been struggling with the symptoms of it. Honestly, as far back as I can remember, like even when I was, a very small child, I remember having real problems with, things like people chewing gum or smacking their lips when they're eating, or even sometimes like people singing

[00:01:28] Adeel: , but real small child. Do you know around which age or just as far as back, far back as you can remember?

[00:01:34] Jay: 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

[00:01:51] Adeel: and around that time it was yeah.

You said like the usual kind of chewing math sounds, things like that.

[00:01:56] Jay: And off key singing .

[00:02:00] Adeel: Are you a singer musician, by the way, but have never more

[00:02:03] Jay: not by trade or anything. , it's just a casual one. I played piano for over 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.

[00:02:18] Adeel: Gotcha. By trade? Musical family, or just Yeah, my,

[00:02:22] Jay: yeah, my dad was first chair trumpet in the symphony here for 30 years. Wow.

[00:02:28] Adeel: Okay. Yeah. So how did so I'm assuming, yeah, home family members were first triggers.

I, 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, actually I should ask first, how were you reacting? Like, how were you expressing yourself at that early, early age? .

[00:02:49] Jay: Back then I didn't, I obviously didn't understand what was going on and 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 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. Yeah. So I remember like covering my ears. I remember begging my mom to stop chewing gum or asking her to stop singing asking my dad to not chew with his mouth open and stuff.

And it wasn't always in a very, polite, , polite manner. A lot of times it was very frustrated because I would, I had a sense that this wasn't like something. that you do. And so I would try to 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. How did your

[00:03:46] Adeel: family members

[00:03:46] Jay: react? Not well. , , I don't think anybody's family members react well. Am I right? ?

[00:03:54] Adeel: Yeah. And that's where the kind of the the, all that that, that shame and that, that real, that kind of like bottle things, bottling things up, that, that kind of just keeps coming at us starts.

Did you start to feel that kind of feel, feeling guilty? I shouldn't be feeling like this? Oh,

[00:04:10] Jay: absolutely. Immediately because I I was told, that is not a normal thing to ask. , don't ask it again. That is your problem, not my problem. Do not ask us

[00:04:21] Adeel: again. And this even when your mom was An L M F T A therapist, right?

Oh,

[00:04:27] Jay: yes. There's a whole thing there. Okay, .

[00:04:32] Adeel: Let's crack that open. That sounds interesting. Oh

[00:04:35] Jay: boy. You're just like my therapist, .

[00:04:37] Adeel: Yeah. Yeah. I just to remind the audience, I am not a therapist, but I like crack things. I like to like it crack things like this open. We'll, we'll get to it when we'll get to it, but as as you were growing up, were triggers starting to multiply.

Were they starting getting to school and whatnot?

[00:04:50] Jay: 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. Initially it was just like with the people closest to me and if we went out to a store or something and somebody was popping and snapping gum, I'd be irritated.

, 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, going to elementary school kids don't really have the best manners yet. And so that was, fairly difficult to deal with. 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 difficult to deal with.

And I would excuse myself to go to the bathroom often.

[00:05:37] Adeel: Yeah.

[00:05:37] Jay: Okay. Because I wasn't, I didn't feel empowered enough to ask, say it, somebody to stop,

[00:05:42] Adeel: Yeah. Did you ever at some point start to tell people to tone it down or you just did not? No, I

[00:05:51] Jay: actually, I never have. 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 deal with . 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 internally self

[00:06:16] Adeel: TTR

Yeah. You're not alone there. We've internalized I will, I'll just generalize and say society has put us to the bottom of the priority list of things Absolutely. Things to worry about. Just before we leave, the early years, was there anything happening around in your early childhood that, that may have been difficult?

I don't know, like stresses, deaths in the family or moving around? You said you've always lived in San Diego and just any, I don't know. Anything you remember. Anything being difficult over those? , not

[00:06:43] Jay: particularly. Generally speaking, I had a fairly good childhood. I, my mom and I didn't really have a strained relationship until I was in my teen years.

So before then 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. Honestly, it really, it wasn't felt though.

Yeah. Yeah. It wasn't anything horrifically traumatic, I wasn't I didn't experience any sort of traumas back then. It was generally very good childhood.

[00:07:18] Adeel: And then those teenage years with your, was it do you think it was like misophonia related that you were starting to butt heads maybe with your mom?

[00:07:28] Jay: No, not at all. That was an entirely separate issue, although it did exacerbate the issues that I was experiencing. It didn't help correct ? Yeah, not at all. Oh my God. It made things so much worse. And actually, I my misophonia was weaponized as a way to gaslight me and to make me feel less than for example, my mom would be chewing gum and I would, we'd be in a car, so I would be unable to leave

And I would beg her to stop. I would be like screaming and crying, like begging her to stop, you know that feeling when it just goes on for that long. And she would crunk, crinkle a piece of paper in her fingers and be like, I'm not chewing gum. You're crazy. I'm just crinkling this paper in my hands, and it would just be used as a way to torment me for whatever reason. So it just made things exponentially worse.

[00:08:17] Adeel: 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. But succeed. Okay. Yeah. And I, again, and not to I, in the heat of the moment I want make clear that we're not parent blaming or anything.

This is what happens. But a again this is, this is not a statement about your mom, but she was a therapist at this time, right? During teenage years. And it only mentioned 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. Exactly.

[00:08:54] Jay: 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 an ex 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 isop. Yeah.

[00:09:31] Adeel: Gotcha. And any, I'm not gonna pry into that, but any, was there any roots of that taking root maybe from those early years when you have When you were starting to develop misophonia, do you think or no, it was complete separate, started later on?

[00:09:47] Jay: No, it definitely developed over time. Okay. It developed over time. Yeah. It went from, you're not allowed to ask these questions of people. This is our environment, not yours to , you're being the big sea . Yeah. Yeah. You're being crazy. Like you can't ask that stuff of people to No, you're absolutely out of your mind.

That's not happening. It's something else entirely. And just gas lighting. So it was something that developed. Yeah.

[00:10:11] Adeel: Yes. Gaslighting. I guess what I meant was, I was just curious if the, that side issue that was that resulted in you cutting out your mom, that, that abuse, sorry, with that, if that No, at all.

It's fine. I'm trying to like be sensitive about the question. I'm just curious if there are any maybe roots or hints of that, whatever that, whatever that, those issues from the early or your early years, like before five kind of thing, or if it was something that just came later completely.

[00:10:36] Jay: No, it definitely did have roots and I can say that because I'm in therapy and my therapist told me that OK . I was describing my idyllic childhood and she was like, Jay, that sounds like abuse . It just, yes, it was definitely something that started in my, earlier specifically around when my my younger brother was born.

That was when my dynamic with my mother changed entirely. Okay. And became a lot, just, we stopped being very close. She much preferred to be close to my brother and I have an assumption, I'm not. Personally a mental health professional, but I have an assumption that was because he was the more quote unquote normal one of the two of us.

[00:11:18] Adeel: Interesting. And then, was the normality obviously disappointed is probably part of it. Was there anything else that she preferred him for over you?

[00:11:29] Jay: Yeah, so he was a lot more outgoing than I was. , I prefer, I was, sporty and on a lot of sport teams and stuff. I actually did synchronized swimming for a number of years US Cool.

But I would, yeah. 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, had a lot of, issues comparing me to what she was like when she was a kid, . So there were just these expectations placed upon me that I needed to be a certain way, 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.

[00:12:20] Adeel: Gotcha. Okay. Okay. Yeah, getting back to, yeah. I just want thank you for joining. Yeah, no problem. I just wanna to get that kind of complete picture from as complete as we could sum up in a few minutes, , but get that lay of the land, just cuz having heard a lot of interviews in often there is some issues with the parents that can result in walking on eggshells and just like confusion and and the the brain kind of being trained to look out for Anger or ex weird expectation issues. Just wanted to absolutely put it out there, just, for people listening who might be able to relate. Okay. And by the way, did your brother notice your sounds like he probably would've noticed that you were having sound issues.

Did he ever I don't know, use it against you too? Or maybe support you or not even noticed ?

[00:13:06] Jay: Yeah, 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 never really used it against me, not the way that my mom did. He didn't really participate in those issues, like when I would be, 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. Gotcha. Okay.

Which I didn't expect, cuz he's, seven years younger than I am. Yeah. He was a little kid. But yeah, he didn't really, even as an adult, he has never stepped in about that.

[00:13:44] Adeel: Were you being called names related to misophonia? Oh, absolutely, I was. What kind of stuff, if you don't mind, just, we love to hear what the others call us, or at least I'm curious.

[00:13:57] Jay: Yeah, absolutely. It was mainly just a couple it was mainly just being called crazy, very specifically being called crazy or like weird, I. She would accuse me of being autistic, which, why weaponize a mental health reporter as a mental health professional? It's so stupid.

Yeah. She was like, only autistic people are like this. And I was like that's a weird thing to say, but okay. Wow. Okay. Yeah. Yeah. So mostly it was mostly revolved around mental health because that's her profession and that's what she

[00:14:30] Adeel: knows. Okay. And what about your, where was your dad in all in all this?

So

[00:14:35] Jay: he, it was he and I had a better relationship for most of my life, and we're actually very close now, but prior to him divorcing my mom, he just divorced her actually a couple years ago, thank God. But 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 he told me that he would have talks with her, Hey, you're being pretty harsh on Jay.

, shouldn't you, like chill ? And she would basically override him. She's a very strong person. And she would override him saying, no, I'm the mental health professional. I know what I'm doing. You have no right to question me, et cetera. So in a way it was also abusive of him because he just stepped back and just enabled her to do whatever she wanted.

[00:15:21] Adeel: Yeah. Gotcha. Okay. Interesting. Okay. So you okay. Where are we now? We're in, I guess like high school, college and then how about, let's just let's talk about maybe friends. How did did you, it sounds like you didn't mention to anybody, but I'm

[00:15:35] Jay: curious. I told nobody.

Yeah. Okay. Nobody, absolutely not. , did

[00:15:39] Adeel: your friends trigger you at all? Maybe start there, or

[00:15:42] Jay: oh yeah. Yeah, of course. I had one friend in particular who, unabashedly loved to chew gum, which to me is the worst. It's the worst trigger for me. Just I can't stand it. It just kills me every time and I.

I never wanted to hurt her feelings or, make her feel bad or anything. So I never said anything to her. And I also, I never told anybody I have misophonia ever until probably the last, like four or five years maybe. , just because I, it 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 wanna invite that drama .

[00:16:28] Adeel: Yeah. How did you how did you deal with it with your friends? Was it like a, the flight situation? Yeah. So when

[00:16:36] Jay: possible, I would leave if I could I oftentimes would clench my fists so hard that my nails would cut my palms. , I would, pinch my thigh to distract me. I'd bite the inside of my mouth or my tongue or my lip. It just anything to distract me so that I wouldn't do or say anything,

[00:16:52] Adeel: Just to feel something different.

Feel, feel a different kind of pain. Yeah. Did you, I don't know, bring headphones or earbuds or anything to situations or was it, what were some of your other coping mechanisms, if you had any ?

[00:17:06] Jay: Yeah I definitely, I, I was pretty attached to my headphones. I'm gonna age myself a little, but I loved my iPod

. And, I was

[00:17:14] Adeel: my Walkman and my Discman in the eighties and oh my God,

[00:17:16] Jay: so suck . I had a pretty sick discman 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 yeah. So I would take that with me and I would have earbuds and I would get noise canceling ones if I could afford them on babysitting money and stuff like that.

But I, in social situations. I tried really hard not to use them because I wanted to be present and I wanted to hang out with my friends. So it was mostly flight and fight with myself.

[00:17:49] Adeel: Yeah. Yeah. What about what about at work and stuff? Work situations. So

[00:17:54] Jay: work, it actually wasn't that bad.

I, I worked basic jobs throughout my teens and twenties, like retail. 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. And that was extremely difficult, cause you have the deathly quiet corporate office.

Yeah. 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. For the most part, some people when they would come up to talk to me would have to like wave in my face to get my attention.

But other than that, they, 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 your buds to do it,

[00:18:46] Adeel: yeah, absolutely. Yeah that's one of the yeah, one of the good things.

But a lot of these even this work from home, are you actually working from home now, maybe since Covid, or are you still Yeah. Going to offices? Yeah.

[00:18:57] Jay: Okay. No, I've been lucky enough to be able to continue working from home and it's been awesome. Like I, 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

[00:19:13] Adeel: God. I always wondered why I did not like work lunches. This is long before I knew what Ms. Funny was. I did not like work lunches with my coworkers, and it was, I just thought they were always, I thought maybe I just thought they were boring, which they probably were too, but yeah, they are , but having to then, yeah, having to then cringe, anticipate triggers and be bored just was just like, hell so much really got promoted, but

[00:19:37] Jay: Yeah. Yeah, it's been a great working from home and I'm actually finishing up my 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 medical 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, but or not even,

[00:20:13] Adeel: you don't even need a note.

Yeah. Just it's this part of the ada, you can get accommodations without without having to get a doctor's note. It's for Oh, there

you

[00:20:21] Jay: go, . Yeah. That's amazing. I so wish I had known about that. I would've just worn giant sound canceling headphones every day. Yeah. And nobody could have said anything,

[00:20:30] Adeel: Yeah. Most people don't know about that, but it, 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 are you thinking, it sounds like you're, you've had some decent work experiences. Are you thinking is disappointing a part of your thinking as you're planning your next career move and whatnot?

[00:20:48] Jay: Totally. Yeah. No, so I actually, I have a couple of associates 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.

[00:21:04] Adeel: Maybe not, ironically, are you ? Are you like gonna cha you know, change the world of misophonia with this degree?

Hopefully, or I

[00:21:12] Jay: wish . Yeah. We'll see, I dig the little niche I've worked myself into at my corporate job, but maybe I can use that to fund a master's degree and maybe I can do some research.

[00:21:24] Adeel: Yeah. No, I just, but just, I'm just curious if if, yeah. Ms. Funny, played a role in helping you decide to pursue this particular degree.

Yeah.

[00:21:33] Jay: It, yes and no. I've always been very interested in psychology. I, I. 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 .

[00:21:51] Adeel: Yeah, no, you make a good point. A lot of us, we feel it so intensely during a trigger the rest of the time.

We really don't want to think about it. I do cuz I have to do the podcast, but it's, yeah, it's something we generally don't wanna think about. So that's interesting. But but yeah, obviously you seem to have a an interest in this. And maybe you'll make up for your mom suck, , your mom's maybe feelings in the psychology.

I'm sure she did great work for some people, but I don't want to

[00:22:16] Jay: She's a wonderful therapist. Yes. She's a great therapist. Just not the best mom. Not for Mr.

[00:22:22] Adeel: Or No. Okay. Yeah, . I won't comment on her mother mothering, but but sounds like there was some issues there. Definitely not a dysphonia, not a, not an ally of misophonia, let's put it that way.

Not at all. Okay. Let's see. Okay so yeah. Then I guess then you, you said, yeah, I guess around four or five years ago you heard it had, so that was, okay. So that was your mom googling it, so this was before you cut her off, it sounds like?

[00:22:48] Jay: Yes. So she actually Googled it when I was a young teenager, probably.

Oh, 14 or 15 years old. Yeah. 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.

[00:23:09] Adeel: Any any more, any elaboration on that?

Did she give, did you tell or was it just the obvious that she's embarrassed by it probably? Or that you have it or she just didn't think much of it?

[00:23:20] Jay: Oh, absolutely. It was a, part of it was a reflection of her, of course. The, that her daughter has something, has an issue and it's, potentially a mental health issue, God forbid,

Oh, so

[00:23:33] Adeel: it could have been anything like she just didn't want to project any weakness. Yes. Of her kids to, to, to the outside world.

[00:23:41] Jay: Yeah. Not necessarily weakness of her kids, but just anything that made her look less than perfect was absolutely unacceptable. , additionally, because so little was known about it and is known about it, that's always very scary.

And she didn't want me to be a medical mystery. 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, this is what crazy people have. This makes you sound crazy, so you can't tell anybody about it. , oh my

[00:24:10] Adeel: god.

Okay. Gee. Wow. Okay. ,

[00:24:13] Jay: this is,

[00:24:14] Adeel: I'm so sorry. Yeah, no, this is I'm smiling in it. Words is not, I shouldn't be smiling. This is yeah, it's just interesting. A among and mental health professional and, it's, this is what we deal with. This is what we deal with. Yeah. Wow.

Okay. And then eventually yeah, like you said, it's not, wasn't mis fornia related completely, but you cut her outta your life. So there's no communication with your mom anymore?

[00:24:33] Jay: We're currently low contact. Low contact very low contact. Yeah. But for a number of years, I wanna say.

So that was probably when I was like 24. So probably for about three years straight. I just did, I did not speak to her at all. And I only opened up a little bit with her because I felt like I should give it the old college try, yeah. There you go. , , just like really, really stick my foot in the door.

And also because, 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 the smallest chance. And I know a lot of people's view me being low contact with her as kind of weakness, Ja, like Jay, you really shouldn't be letting her back into your life.

But it. It does something for me mentally . Yeah. I can look back on

[00:25:21] Adeel: you. It's not something you wanted, but something you had to do. The keep cutting her off. Yeah. Okay.

[00:25:27] Jay: Absolutely. Yeah. No, it wasn't, I did not wanna do it, but I had to for my own mental health and I also had to allow some low contact for a lot of reasons, but mainly because if, the world ended tomorrow, I want to, I wanna know that I did what I could to salvage any vestiges of this relationship.

[00:25:47] Adeel: Gotcha. Okay. And so I guess how's your then, okay, so how's your Mr then been re I guess, recently? It sounds like work and school are pretty, pretty remote. You found out I had a name that, quote unquote thanks to your mom. But , you said also kinda in the, in our little 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 Misson? Is it ramping up in its problems for you? Or how, yeah. How's it been recently?

[00:26:18] Jay: I'm dipping my toes, so I started talking and acknowledging that I have misophonia within the last, like five or seven years, something like that. I currently I'm engaged and my fiance is very supportive. I told him super early on in the relationship that, this is, these are the issues that I have, these are my triggers. Please don't mess with me.

[00:26:43] Adeel: Yeah. So you told him, but you said you don't, you o otherwise you haven't been told anybody.

[00:26:48] Jay: Yeah. Not really too many other people. Okay. 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. Yeah. 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 Steph when I was I just, I couldn't do it.

I couldn't pretend anymore. And y it was, it had already destroyed my mental health for decades. I, and I needed to have someone in somewhere that I could be not triggered and be myself and just have a normal day.

[00:27:34] Adeel: How did you approach that initial conversation? Cause I'm sure a lot of people are in a similar situation.

[00:27:40] Jay: Yeah. It was nerve-wracking. Me personally, I just jumped both feet in. So I word vomited all over him. ? , I ca I came with a printout of what misophonia was and I sat him down and I said, I have this 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. And I can't live like that. So if this is, if you can accommodate me with this and if you can work with me on this and try 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?

[00:28:37] Adeel: . And how was his reaction there?

[00:28:39] Jay: He was very supportive. He he was confused at first. He had never

[00:28:44] Adeel: Why? What could, he had never, he could possibly be

[00:28:47] Jay: No.

What could possibly be confusing about any of that? But he had never heard of it. Of course. Who has? So he asked for clarification and, but other than that, he was really supportive and still is. Like he absolutely will not chew gum. He won't do it.

Gotcha. Okay. 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 I'm not doing it on purpose. And I'm like, I know. I know. I'm so sorry. Yeah. But other than that, he's been great.

[00:29:19] Adeel: And then your current.

therapist not wanting to disturb the therapist patient confidence . But did your therapist know as any therapist that you've had know what Misson is other than your mom?

[00:29:35] Jay: the mom? No. I've only had 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'm, who I've been seeing for a few months, and she had never heard of it. I got to educate her. Yeah. And tell her about it. Nobody I've spoken to a couple mental health professionals aside from her in a neutral situation.

, like I happen to meet them for lunch or dinner or something. And they were like a friend of a friend. Yeah. Nobody's ever heard of it. Nobody's heard of it at all.

[00:30:12] Adeel: Wow. It's funny. Not funny, but the therapists that I know that Noah miss Funny, that's all they do now cuz they're so overwhelmed cuz these other jokers don't have never disonia.

So it's like the and jokers as a joke yeah, , it's just like there's, 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.

[00:30:33] Jay: And another thing too is that I don't think that they've really, I know it's not in the dsm and that's because 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.

[00:30:57] Adeel: You can, it's fine. , just don't act on

[00:31:01] Jay: it. I will never catapult anybody into the sun. I can promise you that. It's been a psychiatric disorder. I've heard people tell me it's an audiological disorder, which I absolutely disagree with because you, you can I'm sure you can relate, I'm triggered by the mere thought of my triggers if I have on headphones.

Sorry, go ahead.

[00:31:21] Adeel: I probably came in prematurely, but but yeah, it's not just audio because as you, what you have is visual triggers that come in play. Yes. And then there's also all the senses. My current thinking is I think the sound part is more of a canary in the coal mine because sound, I was thinking about this recently, and I'm probably gonna sound like a broken record on the recent episodes.

But I feel like for me, like sound is the hardest sense to hide from, because you can close your eyes to not see things and obviously like touch, taste, and smell are very, 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 canceling headphones or you're somewhere else you can't really get away from a sound.

And so it's absolutely if your brain has been whether yeah, somehow learned to be to react as to sounds as being some kind of a danger, that's gonna be the first thing you're gonna notice, I think. Yeah. And then visuals will come after that usually and then other senses, but.

Sorry, getting back to, 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.

[00:32:31] Jay: It is, and I absolutely agree with you because Yeah. Very much and I think that this definitely I've heard it also called a neurological disorder, which I agree with because if you think about this, like what you were just saying, like you can close your eyes to sight, but 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, but , it really goes to show that our fight or flight response is like hyperactive, 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? . And for us it's devolved into an everyday into an everyday issue. But I do think very sincerely that this is a neurological problem. And I think that once they, the, 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.

Cuz as it stands right now, it's just a free floating like phobia, arachnophobia, like there's not really treatment for that because it's just a phobia and that's how they're treating misophonia. Yeah. As like a personal problem rather than an actual disorder.

[00:33:55] Adeel: Yeah. Yeah. It has been the def current definition, the cons consensus definition that was released in the past year does officially call it a disorder. But that's, that's taken years to get to that point. Yeah. To even call it officially that. And yeah, I know there's it's an interesting time because I think I think there's still debate raging as to how 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 a tug of war be between there's a back and there's a, I think there's a back and forth between does a maybe a genetic or neurological component to it. But then it also can be flipped on 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 , and, but I think it needs to be a lot more research to figure that out. But I'm personally hearing a lot of common ish, coming ish stories of people having, similar situations, like something difficult happening early in childhood, whether it's a single event or a chronic parental anger kind of issue.

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 turning.

[00:35:18] Jay: Yeah. Yeah. 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. And it's right. It's just making everything worse. And I'd also be interested too, if this is if this truly gets classified as like a brain disorder I'd be interested too, to see if anybody had, or how many of us had any type of head injuries as children.

Cuz I know, kids run into stuff constantly, and I wonder if there's just like a particular spot on your head where if you hit it too hard, like it just, it messes up with those, with that stimuli.

[00:35:59] Adeel: Good. Your researchers are yeah. Many different directions that the, that we're yeah.

That we could be going to. Yeah. There's so

[00:36:07] Jay: much to learn.

[00:36:09] Adeel: . Interesting. Okay. And so you're and so your current therapist, you're, they're seeing you educated them on Misson. Have they tried to address it at all or is there just enough other stuff, , to get you first ?

[00:36:23] Jay: To be honest she just left it by the wayside.

, I don't think that was intentional. I just, I, she probably looked it up and was like , I don't think there's much I can do there as a therapist. Yeah. So I will wash my hands of that, and there are other things going on that we wanna 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.

[00:36:48] Adeel: Gotcha. And I guess not to prior not to kinda rank things, but, compared to all, , the other stuff that you talked about, would you, in your mind, would you put Misson roughly near the top of like the things that you, that are, that kind of bother you?

Yes

[00:37:06] Jay: 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.

As far as my, as far as I'm concerned, I'm doomed. This is it, this is what I have and I have it forever. So 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, .

[00:37:45] Adeel: Yeah. You've expressed what I think a lot of field, which is honestly sad, right?

That we are, that we just like this giant 800 pound gorilla in the room, we've learned to just shove it into a tiny hole. And we've even around a professional, we're like there's probably no way I deal with this. This is normal for me now. And I'm just gonna keep internalizing it.

, I, , if that therapist maybe had some ideas or had knew about it, known about it, obviously you'd probably wanna 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 our, dealing with it on our.

Absolutely. And

[00:38:19] Jay: I liken it to because I also have chronic migraines and I liken it to having a headache every single day of your entire life. Most people, they get a headache, they take some ibuprofen, some Tylenol, Motrin whatever your brand of choice is, you take it and you move on with your life.

And if you have a week where you have a headache after headache, it's annoying. And you start to like question oh, maybe there's something deeper wrong. But if you have a headache every single day of your life, you're not gonna take meds every single day. , if it's not something dire, you just move on with your life and get used to it because you have to live. And that's I think what everyone with Meson has done is they've just crammed it into the back of their head and never sought any relief because it just feels so, so chronic and so lifelong.

[00:39:00] Adeel: . Yeah. So interesting.

Okay. Any we, yeah, we're getting guess we're getting into yeah. About north of North 5 40, 45 minutes here. So I want to maybe Yeah. Talk about that, 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 have, are you, do you mention misophonia, at all to your family members now?

[00:39:30] Jay: No. No,

[00:39:31] Adeel: not at all. What about extended family members? Anybody else? It sounds like nobody does. Yeah.

[00:39:37] Jay: No, definitely nobody. I know my mom has talked about it too.

I, 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 few regardless. Whereas my mom's side, there's a ton, there's 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.

And I don't have a very close relationship with them anyway as they, they live clear across the other, on the other side of the continent. 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.

[00:40:22] Adeel: Why did she tell them? Because she, she said that she didn't want to talk about it with anybody.

[00:40:27] Jay: I know. It's really, she's full of contradictions. My mom . It wasn't anything kind to be sure. It was more of oh, I'm such a martyr, 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 more of a complaining session. Yeah. It was more about her . Yes, absolutely. Everything is . Not to sound salty or anything, but . Yeah. No. Saltiness. None at all.

[00:40:57] Adeel: Okay. Okay. And what about your fiance's family?

Do they know about it?

[00:41:03] Jay: No, not at all. And for very different reasons. My fiance is a person of color, not, he's not African American. I don't wanna say too much about him to identify him or anything, but he is not an American citizen by birth. He is from a completely different country. His family is from a completely different culture. Mental health is not recognized as an actual issue there, as as it is in a lot of other countries. 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, obviously am not gonna just, thrust my 800 pound gorilla, as you said upon them, they wouldn't understand it and they wouldn't appreciate it. And it's just, it would just make our very good relationship, a little weird , it would color things for them.

And I don't wanna I just don't have the skillset to be able to broach that, so I'm not

[00:41:59] Adeel: going to . Yeah. No. Do I tell Ms. Films, just do things on your own terms. You've, you've, we've dealt. , we've dealt with this every day. We've dealt with , other people's reactions every day for our entire lives.

So I, I think once we recognize what it is we should give ourselves the grace to like you, trust our instincts, in how we deal with it. Yeah.

[00:42:22] Jay: Yeah. And honestly, like using the royal we here, like we have dealt with enough . Yeah. If you need to avoid that conversation because you're tired of having it, don't, just don't have the conversation.

Yeah, that's fine. ,

[00:42:34] Adeel: no I do that. I, even though I have this podcast, I'm like, I'm not, I'm I don't, I'm, I don't have time to be Mr. Public awareness to people who don't 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 wanna have that conversation one day don't do it, don't you? We've, we, yeah. The royal we have, we've dealt with this more than enough and let's. Work on ourselves and get tips from each other and and leave it at that .

[00:43:04] Jay: Yeah. Honestly, and additionally, it's not our, it's, not to sound harsh or anything, but it's not our responsibility to educate every single person on the planet.

About misophonia. We can educate as many people as we want to, but as soon as you don't wanna do it, it's okay to stop. If someone is genuinely curious, they can Google it. We have the Google, like they can look it up. They don't, they can look up an Instagram

[00:43:25] Adeel: group. Maybe it's in the Encyclopedia Britannica by now, who knows?

But yeah, there's . Yeah. Or Phono frame. Yeah. Yeah. No, this is interesting. Any other yeah, any other words of advice than to other missed phones? It's like you haven't really talked to any other missed phones, but you have opinions, so I'm curious to,

[00:43:40] Jay: I have so many thoughts and opinion. Yeah.

Please. Yeah, I haven't, I really don't know anybody else who has Meson 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 hon, I don't have too much else to say except if something makes you uncomfortable, like you can totally pull yourself out of that situation.

If you're sitting at dinner and somebody is chewing really loud and it's making you extremely uncomfortable, you can just get up and go, . , we, I'm sure a lot of us are adults and even if we're not we're allowed to have boundaries and sure, you don't have to be a jerk about it, but you can get up and walk away and say I'm gonna need a minute.

If they don't know that you have Meson and you don't wanna tell them about it, just ex you can excuse yourself to the bathroom as many times as you need to. 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 , honestly,

[00:44:31] Adeel: and honestly, any other condition?

I might be exaggerating. But any other condition, even if you made up a fricking word like that, would be taken more seriously than if you can explain what Misson is. Yeah. Cuz everyone's oh,

[00:44:44] Jay: it's just a pet peeve. Yeah. Absolutely. It is not, and it's not like you have a control, have control over your reaction to these sounds.

You know it. Oh, I totally agree with that. And just hearing that makes me so mad. ,

[00:44:57] Adeel: oh fuck. I don't wanna make you feel mad. Should be com camaraderie. We're on the same page. Do you have you ever had I had had a couple of job interviews in the past year or so and where the person interviewing me said something like, oh, I have a mild bass pony.

I think . What? I'm like, oh, come.

[00:45:17] Jay: I, this is not gonna work. Yeah, absolutely. You know what I'm gonna say? A hard pass to this job and good luck to you. Yeah. One person did one of my,

[00:45:26] Adeel: I don't wanna judge anybody, but it's I can tell from that person that it was just like, it like wanting to, everything has to be, I could tell you it was like everything would have to be about them.

And so of course they just want to feel like they know everything

[00:45:39] Jay: and it's and it's minimizing it. Like if everybody has it, then nobody does. It's also, it's similar to when people are like, oh, I have to make sure to clean my bathroom once a week because I have Ooc d.

It's like absolutely no, you don't have OC ocd. Ooc D 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 tear your head off physically, you don't have misophonia, . And you shouldn't be appropriating that

[00:46:06] Adeel: And it's not just because we are. and, easily ticked off or something. It's not like a no it's different than anger management or any other kind of like gross subversion or whatever. It's like it's neurological slash past experience. I don't wanna say, I don't want to, the word trauma is a loaded term, but it's, it, it could be very much it trauma related trauma to, to, to something that Trump tend in itself.

But it could be related to, to, like we talked about earlier, just other issues stresses in the environment growing up, which again, this doesn't necessarily have to lead to Miss sw, it could lead to many other things. Miss SW just happens to be, or one other thing. But it's happens to be the one thing that right now, here in 2022, it's still taken as a joke.

[00:46:52] Jay: Yeah, absolutely. And it's not, it's like the least funny joke I've ever been told. This is not funny and it needs to stop .

[00:47:01] Adeel: Yeah. Okay. So yeah. Any other, I'm trying to see if we could explain any other your opinions, cuz I'm sure I'm, there's tons of people who are listening who've probably been googling it a lot and have, obviously go through it and have amassed opinions.

, when you I guess are you maybe on social media? Are you following the community online like anywhere or. ,

[00:47:25] Jay: I'm following a couple pages on 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? This is weirdo.

[00:47:37] Adeel: Yeah. Yeah. Why

[00:47:38] Jay: would you do that? Yeah. I was like, literally, why would you do that? What is wrong with you, ? Yeah.

[00:47:44] Adeel: That's kinda why I did it. I was like, it takes a special not, no, I don't wanna say it's special, but obviously these stories need to get out and and putting myself out there, like putting yourself out there and sharing, like bothering to spend this much time on something that society takes such a joke.

Like it takes a certain type of personality because, oh, we are just ridiculed so much our entire lives. So I feel, felt I think I have their, personality to do it. Somebody has to do it. And but I think it's, 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 and so it's good to have hear stories like yours, your opinions like yours because a lot of us have this debilitating thing and we've had similar experiences. And so the here just the message to get from people saying that hearing these other stories like completely changes their life, or at least makes their past makes sense, is, what gets better than that?

[00:48:42] Jay: 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. 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.

[00:49:12] Adeel: Yeah. Yeah. Ha has it I guess we should, yeah. Maybe we should just start wrapping up soon. I was curious that the answer might be no, but has it, has knowing that there's a community, just being able to go and hear other people's stories, has that kind of helped it moved the needle at all, or, I don't know, given some kind of positive light on, on what you're experiencing?

It made me

[00:49:33] Jay: feel good and bad. , 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. This is a tough. 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 the hardest thing I've ever dealt with throughout my entire life. And I've gone through a lot of stuff and it just 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 never had that and I wouldn't wish that on my worst enemy, . 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

[00:50:35] Adeel: Yeah. Yeah. Yeah, maybe let's leave it on that note. Unless you have anything else to share. Thanks Jay for coming on and sharing everything here. Yeah, of

[00:50:45] Jay: course. And I guess if I leave anything behind, I just, 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 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, the best po That's just the best thing, honestly. So lean into your community.

[00:51:23] Adeel: Yeah. I wanna say, yeah, exactly. So that. that I wanna I also wanna emphasize that the community is very understanding and accepting because all the reasons that we talked about like that, we've been beaten down mentally or told that we're idiots and crazy. But 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 down to the situation experiences.

And almost is very surreal, especially if you, even if you listen to a lot of these episodes, how close some of our pasts were, even though we're, different people and culturally or demographic or whatever. And yeah, leaning to the community, you'll quickly find people, knock on wood, you'll quickly find people that That you share a lot in common with more than just misophonia.

[00:52:19] Jay: Yeah. So that's so important that knowing that you're not alone. , I gotta get to that convention ,

[00:52:26] Adeel: It actually, this what is it starts on the, this year, it starts on the 15th. It's online only, but if you go to, I dunno, you can Google it. Yeah. I'll Google it.

Association does a convention and I'll be doing a this will air probably after the convention, but I'll be doing just my talk on my less, it's just me just going on for an hour about my thoughts and lessons from talking to, hundreds of people.

[00:52:47] Jay: Cool. If there ever was a target demographic for a silent disco, we're it

Like ? I like if there's ever, if there's another convention like. with, in, in the physical world. , I highly vote for us to have a silent disco because that would be absolutely ideal for all of us.

[00:53:07] Adeel: Yeah. Silent disco are also like really loud. Shoot. Like my Bloody Valentine, like really loud shoot gave us

[00:53:13] Jay: absolutely.

My Bloody Valentine. Yes. Or AFI or something? Yes. Yeah. Like just the loudest music possible .

[00:53:20] Adeel: Oh, okay. It's so funny, I have dreamed about doing like a mis funny music festival where maybe it might be, like a this is aging ourselves like a live age for mental health, but yeah.

But oh, like Misophonia is like the main sponsor and then all these bands come on to, plug their, the more normal mental health conditions. But yeah, I dreamed about eventually having a mu kind of a music festival. So

[00:53:43] Jay: that would great. That would be amazing. I would of course absolutely attend.

[00:53:46] Adeel: Yeah. Yeah. Okay. I'll sign you up. Cool. Yeah, Jay. Yeah, this has been really fun and yeah, I'm glad you're a part of the community now and thanks for sharing the stories. This's gonna help a lot of people.

[00:53:56] Jay: Of course. Thanks for having me on. I really appreciate the opportunity to talk about it.

[00:54:01] Adeel: 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. If you like this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You could hit me up by email@hellomisspodcast.com or go to the website misson podcast.com.

Easiest way to send a message is on Instagram. At Miss Podcast, follow me there or Facebook at Miss Podcast Twitter where misophonia show. Support the show by visiting the Patreon pat.com/supporting podcast. The music as always is by Moby In a tone next week, wish new, peace and quiet.