#228 - B

Adeel [0:00]: Great, when you do the welcome, I'll just say B, and that's probably good enough. Okay. Well, B, welcome to the podcast. Great to have you here.

18753086 [0:06]: Yeah, B is great. Thank you. Thanks for having me.

Adeel [0:15]: So yeah, I usually like to ask people for starters, roughly where they're located and what they do, but feel free to share whatever you feel comfortable with.

18753086 [0:26]: Sure, yeah. Right now I'm based in the New York metro area and in this exact moment I'm on the move through central Pennsylvania.

Adeel [0:37]: All right, okay, cool. Well, yeah, so obviously like for most people, I don't really like to ask too much upfront, but maybe we can just kind of start with what's your misophonia situation like these days?

18753086 [0:54]: Totally. Yeah, my misophonia situation these days is, you know, as I'm sure everyone can relate to, still really bad, but like manageable, more manageable now than it ever has been in my life. I'm about 30 and in the past couple of years. Yeah, has become more manageable in my life. It's sort of like one of, if not the biggest part of my life or my biggest struggle in life. And my trigger sound is like mouth sounds, eating, gum popping, chewing, loud slurping. Yeah, classics, classico style.

Adeel [1:43]: Classics. Yeah. Yeah. And if you have things that more manageable now, I'm assuming you're probably, I don't know, maybe kind of living relatively independently and there is a lot of other triggers around most of the time. You have a little bit more agency maybe? Is that kind of what I'm reading?

18753086 [2:05]: I do, well, I have roommates, but I do live like independently. I have lived independently since I was 17. But it's more about for me, I used to get like really, really choked up and really nervous to tell anyone that I needed like accommodations. Almost like asking for accommodations would trigger like a similar misophonia style response where I've become like red and hot and like almost immediately crying. And over the past couple of years overcome that a bit. Just feel a little bit freer to be like direct and confrontational about my needs. think like also the conversation around like sensory needs has like really opened up in a way that most of the time now I'm not even questioned. People are just pretty accommodating, which was not the case for most of my life.

Adeel [3:16]: Mm-hmm, mm-hmm. Yeah, and August, when did you find out that it had a name?

18753086 [3:22]: I was, I think I was in, maybe fourth grade. I am lucky to have been raised by a mental health professional. So it took a couple of years, but my parent realized pretty early on that the reactions I was having to trigger sounds were not within the realm of... sort of average or normal responses to sensory input. Whereas like, you know, I think again, as common, you just kind of get labeled like a difficult child or like sensitive. And my, my parent was able to recognize fairly quickly that it was outside of the breadth of that. And started doing some research, took me to some auditory specialists and I don't remember exactly who it was that put us on to the name, you know, Miss Ophonia, but I do remember going to an auditory specialist in Philadelphia who gave me what looked like hearing aids, but they were white noise generators. They were like white noise generator hearing aids. And I remember being told like, is to treat the misophonia.

Adeel [4:58]: Mm-hmm. Yeah, that's a common, an audiologist must have given you something like a Widex. It's one of the brands, I guess. Did that help?

18753086 [5:16]: Yeah. I never really came around to using them because they were really, really uncomfortable in my ears. Like really itchy and I think at that age, know, especially in the area where I grew up, which was very monocultural, anything that...

Adeel [5:28]: Hmm.

18753086 [5:47]: you'd bet about you that set you apart was not something you really wanted to be doing so yeah, I never really used them and sort of just struggled through primary school and high school. And what's funny is that whenever I was given a pair of AirPods a couple years ago, and they have, you know, the white noise feature. And until I got loop earplugs or whatever they're called recently, the AirPods white noise feature was just like what I was using anytime I was like going to be around that trigger noises and I was like oh this is like exactly the same as what they tried to give me you know 15 years ago.

Adeel [6:45]: Yeah, yeah, no, it's very similar. I mean, with the Widex, they try to tell you that they're doing some kind of fancy tuning, but it's really just white noise. But loops are a little different because obviously they're more like expensive earplugs. Was that also helpful in a different way?

18753086 [6:55]: Yeah, yeah, totally. the loops.

Adeel [7:10]: Yeah.

18753086 [7:12]: Yeah, they've been hugely helpful. They've been hugely helpful. Those were also given to me. So many of my like tools have been gifted to me by friends, which is really so, so sweet because I'm kind of like a curmudgeonly type that's like, I don't know about all this. I don't know about this air pod shit. Like I don't know about all that, you know, and

Adeel [7:21]: Mm-hmm.

18753086 [7:41]: then it will turn out to work and I become a proselytizer for the product. yeah, loops have changed a lot for me, especially in terms of the AirPods were cool and working, but they're really, really anti-social. Unless I had communicated to someone beforehand, I'm gonna be wearing AirPods. I'm just playing white noise, you know, like I can still hear you, but if you can speak up, that would help me. La la la. People just think you're like listening to a podcast or something. You're like, you don't want to be talking to them. And then there's also the layer of like in some conversations I'm in, in some spaces that I'm in are like absolutely no electronics. And so if I had to go to a meeting or what have you where

Adeel [8:18]: Right.

18753086 [8:35]: it was no phones, then I couldn't take AirPods either, right? So the loops are a bit more discreet, obviously not connected to any type of like geo tracking or surveillance. And for me, they don't, they like just lower the threshold, know, massively lower the threshold and buy me more time. Cause it's really how I think about my misophonia is like. if I can buy time until I get to the point where I'm crashing out, like fight or flight is on 100. I'm like, you know, anything to just like buy some time before I get there is like sort of my coping strategy.

Adeel [9:22]: Yeah, no, that's exactly how I would say it too. Yeah, just to kind of make that slope to burnout slower, gives you time to, and hopefully gives you time to recover after whatever happened, if you don't get to maximum. Do you know what kind of loops, I know there's like a billion different varieties, I'm just kind of curious if you remember the model.

18753086 [9:33]: Yeah. You know what? I don't think I know because I didn't order them. But I'll look it up and I can send you afterwards.

Adeel [9:55]: Yeah, yeah, yeah, no worries. Yeah, I was just curious. Well, that's cool. Sounds like, mean, one of my questions was going to be like, have you told anybody, like, what do your friends think and whatnot? But it seems like you're, especially in the last couple of years, you've been a little bit more open about it and friends have been supportive.

18753086 [10:12]: Yeah, totally. I mean, it was like pretty clear early on that it wasn't going to be an option for me to not tell people. Especially like I struggled a lot in high school, like tried to keep it somewhat of a secret and people found out and I was not the most popular person in my monoculture.

Adeel [10:18]: Yeah. Mmm.

18753086 [10:41]: country hometown. And you know, people found out and would sort of torture me by like passing out gum to everyone in class and I would have to like leave school. ended up, I ended up like not going to school a ton in the last couple years of school because I really couldn't take the sounds anymore. And

Adeel [10:54]: I

18753086 [11:10]: Yeah, it just like, it just became clear that like, whether I kept it a secret or not, was not going to have any material effect on my comfort. You know? And the best I could do is, was try and like... just be honest and in my youth especially like ally myself with people in positions of power to say like you know this is something I really need like try to ask teachers or try to ask professors or you know whatever you know this is something I really need I would I needed to come from you I need you to ask the class that that there can't be food or there can't be gum, and that there might be penalties or something because I won't be able to, I can't acclimate to it. And it was hard to get people to understand that it was not something I could get used to. And actually as time went on, if it persisted, it would get much worse and I would have to remove myself from the environment completely, whether or not there was a trigger sound, because I would always be expecting it. And that part is the one that I think people really...

Adeel [12:01]: Mm-hmm.

18753086 [12:29]: struggled to understand, but again, like less so now, like people are more with it now for sure.

Adeel [12:36]: Yeah, I know. And sounds like, you stuck to your guns, you stuck to your instincts, and you kind of just kept asking for a combination. you know, finding that circle of friends, did that, did you just happen to, did you just always have a core group of friends, even though you weren't the most popular, who were understanding? Or was there something that you learned about how you were communicating it that, you know, helped you find allies.

18753086 [13:10]: When I was younger, I think that... Like, to be real, I think my reactions were so extreme and so intense. And I've always just been kind of, I think Misophonia has like made me a reactionary and like at times very angry person just by nature because of how on edge I am and have been for like my whole life. So I think that when I was younger, especially like the reactions were so intense that think my friends were a little afraid of me, like a little afraid to trigger me, a little afraid of like the death glance, you know, if they forgot. And then as time went on, sort of evolved past just like pure reactionary living in like anger, anger, anger all the time. I've always just had like really, really tight homies in my corner and friendship is.

Adeel [13:49]: you Yeah.

18753086 [14:14]: Friendship is like the most important thing to me just in my life. It's like a part of my core value system to like really prioritize my friendships. And I think when you're putting that kind of energy into friendships, it's really easy to ask for things. So yeah, my friends have all, yeah, I mean, they slip up constantly, but they all know and are able to tell people that I don't know as well as them.

Adeel [14:39]: you

18753086 [14:45]: especially before parties or before hangs or whatever, we're bringing a new person into the fold or whatever. My friends will take it upon themselves to talk to new people for me and be like, hey, Belle has this, sorry, Bea has this thing. Thank you. It's something that we just need you to be conscientious of so they can have fun and be chill and whatever.

Adeel [15:00]: I'll cut that out, don't worry. Yeah, no, that's great. I guess going back, like when did you first start to notice this? this, yeah, did you say like around fourth grade or even earlier?

18753086 [15:24]: I think I started noticing around like third grade, yeah? Like maybe when I was... nine or so, like very, very, very early. I'm like a pretty, I would say I'm like a textbook case where like at the very, very earliest onset of puberty is also when misophonia started showing up.

Adeel [15:45]: you Yeah, and I guess, it your home life? Was it people at home who were triggering you? Just kind of curious how that kind of evolved.

18753086 [16:01]: Yeah, my earliest memory and to this day some of my most intense reactions that I can remember were from sitting in the backseat of my dad's truck. We used to make this two hour drive to my grandma's house every couple of weeks or so. My dad would chew dentin ice and keep the dentin ice gum in his visor. And as soon as I would like be sleeping or playing a game or whatever reading and as soon as he would reach for the visor, like my whole body would go stiff, you know? And he was like a really, really loud chewer and he would like pop a couple pieces and just be smacking. I would get, I would like pretend to be asleep and just like kick the shit out of the back of his seat. He'd be like, yo, yo, yo, stop. And I'd just be like, be like, sorry, I was sleeping. And I would ask him like, please, please like, shoot with your mouth closed. And before he knew what was up, you know, he'd be like, you need to mind your own business. Like, you know, I'm driving my car, but yeah, just like really intense, violent, like for a kid at least, like violent outbursts, like kicking the seat, thrashing, just feeling like I wanted to like jump out of the truck. And that is like my earliest.

Adeel [17:13]: Mm-hmm.

18753086 [17:31]: memory of like a trigger.

Adeel [17:33]: Yeah, was anyone else in the car? Mom, siblings?

18753086 [17:37]: Yeah, my sister typically. Let's switch out to just say my sibling.

Adeel [17:39]: Gotcha. Was he a sister? Yeah. Okay. Yeah. Yeah. And were they also triggering or was it just your, your dad?

18753086 [17:44]: Yeah, my sibling was in the car. I don't really remember my sibling being triggering, but over time everyone, you know what mean, like everyone became, especially like now.

Adeel [18:00]: Hmm. Yeah.

18753086 [18:18]: My mom is my like, one of my main trigger people. And I don't even really remember like being triggered by her early on. Yeah.

Adeel [18:31]: Mm-hmm. And I guess what was, were these trips to your grandma something that you were looking forward to? I'm kind of curious, you know, when you got into the truck, what was the vibe like, around home, at that age?

18753086 [18:49]: I mean, things are pretty chill. To be honest, I had like a pretty textbook, like a pretty textbook, like Small Town American Life. I was just like really angsty, really angsty, like troubled, depressed kid from the jump. just really like precocious, really anxious, wanted to like

Adeel [18:59]: Mm-hmm.

18753086 [19:19]: relate to adults, had trouble relating to kids my age. But yeah, like home stuff was fine. mean, like not just as fraught as like everyone else raised in the early 2000s, but nothing like notably traumatic, I will say.

Adeel [19:44]: Yeah, were you younger or older someone?

18753086 [19:48]: I'm the older one,

Adeel [19:49]: Gotcha, gotcha, okay, cool. Yeah, so okay, yeah, so around that age. Oh, actually, do you want, your parents, guess, I mean, were they also kinda anxious? I'm just kinda curious what kind of vibe they kinda generally had.

18753086 [20:08]: Yeah, yeah, yeah, they're, they're like mom, deeply anxious sort of like in denial type person. Super sweet, like, just keeps a keeps a very solid veneer of like, wants to keep everything at the surface. And then crashing out whenever

Adeel [20:24]: or something or...

18753086 [20:39]: things went anywhere beyond that. And dad, like definitely, definitely anxious, anger issues. Like the vibe in the house was like, you know. It was anxious. Yeah, for sure.

Adeel [20:58]: And by crushing it, I'm kind of curious, what did you mean by that? Just overwhelmed and.

18753086 [21:04]: just like a crash out being like, you're just like freaking out. Yeah.

Adeel [21:09]: Yeah. Did you, do you remember much like, you know, lot of, a lot of us kind of remember like a kind of a walking on eggshells situation where, you know, things seemed fine, but you know, as long as we just kind of didn't at certain times didn't kind of like, I don't know, trigger somebody's anxiety. Did you kind of remember feeling that when you were younger? Yeah.

18753086 [21:32]: Yeah, yeah, definitely, definitely. Yeah, definitely.

Adeel [21:36]: Gotcha. So then obviously your parents noticed when you were kicking the back of the seat and whatnot, did it turn into being triggered in the house too, maybe around meals? How did your family deal with your misophonia?

18753086 [21:56]: Yeah, I mean, once they knew, it was a lot of like, all right, make sure to like, you know, chew with your mouth closed. We were never super a family that all sat down to eat together anyway. Me and my sister would be given dinner and we'd eat fast and then go do our own things. So it wasn't, for me, it wasn't like a huge paradigm shift. to be like, I don't really want to be at the dinner table, you know? And yeah, I feel like that's all I have to say about that.

Adeel [22:34]: Yeah, did your, I mean, guess did you go to, I don't know, therapy or did your parents feel like taking you somewhere to get your misophonia looked at? Kind of curious.

18753086 [22:48]: Yeah, yeah, so when...

Adeel [22:52]: I guess the Y-dex, I remember, but yeah, anything kind of before that.

18753086 [22:56]: Well, no, actually after that. I guess maybe I was 14, 15, 16. I started seeing a therapist who was working on like mindfulness techniques with me, playing, would like hook up to a heart monitor and play some like visualization games that had like.

Adeel [22:59]: Mmm.

18753086 [23:22]: you know, a balloon floating or whatever. And it's like, as you can regulate your heart rate through like breathing exercises, theoretically, like you, you know, you can stave off like the over-saturation moment of like the trigger sound longer. And so my therapist, we would work on like her pulling out a pack of gums from the purse and like, let me regulate my breath. opening a piece of gum and just like playing with the rapper, regulate the breath, have her chew it, whatever. And I do genuinely feel that my misophonia stopped getting worse after that intervention. I know a lot of people, the intensity of...

Adeel [24:07]: Mm-hmm.

18753086 [24:17]: the trigger, the breadth of the trigger noises can sort of expand into the early 20s. I do feel that, yeah, mine has sort of stayed the same since early high school.

Adeel [24:34]: Okay, so it hasn't gotten much worse in terms of like new triggers or intensity of triggers since then.

18753086 [24:41]: No, no, no, yeah.

Adeel [24:44]: Gotcha. And it hasn't gotten much worse. It just feels kind of the same since that.

18753086 [24:50]: What was that?

Adeel [24:52]: Oh, and it hasn't gotten worse in any way, kind of feels like it's stabilized a bit.

18753086 [24:58]: Yeah, I think it's definitely stabilized,

Adeel [25:01]: Do you consciously think about those kinds of techniques and skills, different kinds of breath work or whatever while you're being triggered?

18753086 [25:12]: No, not so much anymore. The earplugs, the air pods, removing myself, for me it's extremely difficult to, as my nervous system is like ramping up super hard, like I find it near impossible to settle into like a breath work exercise, especially if I'm around other people, it's like not natural for me. And I know that that's something that takes practice, but

Adeel [25:15]: Hmm. Yeah, yeah.

18753086 [25:42]: I think that type of thing is like in my life, pretty much only useful in a controlled environment. And I guess you could argue that every environment that you're in is a controlled environment if you are willing to take control of it, but it doesn't always feel that way.

Adeel [26:06]: Yeah, right, yeah, that was definitely a spectrum. And I guess, so you mentioned, I don't know, you mentioned professors at one point. you, after high school, did you go to college?

18753086 [26:15]: Yeah, yeah, Yeah, I went to school.

Adeel [26:22]: And how did that go there in terms of, I guess, accommodations? I guess, because you probably went around the time when there's starting to maybe be a bit of awareness, if not misophonia, then just kind of like neurodivergence in general. How was that in terms of getting, you know, recognized and some kind of accommodation?

18753086 [26:38]: Yeah, I, you know, I, to be real, struggled pretty intensely in my early and mid-20s with substance abuse because it was one of the ways I coped with misophonia. My triggers were less intense when I was drunk or high. So college is in fact a little fuzzy for me, but bit of a blur.

Adeel [27:01]: Mm-hmm.

18753086 [27:08]: But I just remember taking steps like I rarely signed up for night classes, for example, because I knew that people would be bringing snacks or it's like a time when people want to, you know, those classes would have a break and people would go get things from the lounge in the basement of the building or la la la. I studied a discipline that

Adeel [27:10]: Yeah, bit of a blur. Yeah. Hmm.

18753086 [27:39]: I don't know, culturally was like a little different than, I took classes in like the business school at my school for like scholarship eligibility and the culture in those classes was much more gum, snacks, like we are in, like it is a free for all. And no offense to any business majors out there, that is just what I noticed. And the discipline that I was in. Yeah, well, it's just exactly like everyone is like both taking themselves so seriously and also like treating it like, I don't know, like daycare or something like you need a snack to get to a 45 minute lecture. It's crazy. but I studied it is when that I studied art history and museum studies. And I think that that tends to attract a little bit more of a like quiet, thoughtful crowd.

Adeel [28:10]: It's go, go, Wall Street, making deals. Smackin' gum.

18753086 [28:37]: I'm making really sweeping generalizations here, but not a lot of eating in those classes. And so, yeah, it was not something that I had to ask for explicitly much, but I did request several times to take.

Adeel [29:04]: Yeah, I that's fascinating because I'm a slight digression, I'm reading some philosophy books and there is a discussion about active life versus the contemplative life and are kind of modern. The active life is kind of like taken over and the contemplative life obviously is not, it's kind of obvious it's kind of gone down and there's talk about how that's at a meta level has led to a lot of that. what this philosopher calls neuronal issues like depression, ADHD and whatnot. So it's interesting that you mentioned that contrast between business and art history. Very interesting, okay. Yeah, no, that's an interesting experience. And then after you got out of school, you're probably trying to get into the workforce. How did misophonia start to evolve then? Mm-hmm. Mm-hmm. Yeah. Yeah, I also never liked the kind of the assumed or the forced kind of like eating with your coworkers situation. I was just like, I just want to like take this time to myself, but you know, oh, sit at this table. Hey, let's talk about trivial matters. I guess, so going back to kind of, I don't know, don't have to get into too much detail, but you know, substance abuse to go into oral commissifonia. it really mainly the misophonia? Were there other kind of co-morbid issues that you were kind of maybe dealing with around that time? And, well, let's start there, I guess. Mm-hmm. Hmm. Mm-hmm. Gotcha. Yeah, no, there's a lot right there. And yeah, your body parts self-medicate from sounds like a kind of a lifetime of kind of chronic vigilance that you needed to express starting at sounds like a young age when there was always the threat of something you said crashing or someone crashing. And then, you know, that just kind of like sticks with you if it happens often enough into adulthood. At least that's my theory. Did you or, yeah, and interesting notes about, yeah, that's kind of the glamour in our culture and that's probably what parts of our bodies who are vulnerable will snap onto and think, that must be the way out. Did your, again, you don't have to get into it, but was there any self-medication going on with your parents or were there any patterns that you were witnessing around family in that kind of culture? Yeah, yeah, yeah. Do you, I guess now, do your parents know about misophonia? I'm just kind of curious how they talk about it, if they do. Yeah. What are their thoughts? Okay. Was it always like that or were there, you know, moments of... Yeah, that's great. A couple of things with that history that I'm curious, you got that OCD diagnosis. that very separate from misophonia? I'm curious sometimes without misophonia sometimes being misdiagnosed as something like could be OCD, could be other things. I'm kind of curious if that was a distinct thing. You don't read the DSM every night? I'm just kidding. Right, right, Yeah, no, that's interesting. Yeah, I'm curious, I guess, your... Yeah, being raised by a mental health professional, guess, yeah, I'm just kind of what that complexity is with the mental health. I definitely have some as well. I'm just kind of curious kind of what you thought of it and did you ever talk to your parent who was a mental health professional about that tension? Mm-hmm. Yeah. Mm-hmm. Yeah, yeah, no, you probably don't have to. With only about 10 minutes left, we don't have time to get into all that. that is it. Yeah, those are all fascinating things that I love to think and talk about. but kind of wanted to just take a peek there. But yeah, you're right. mean, things got things in the last 40 years got a pendulum swung away from psychoanalytics to medication, which you're right helps in some ways, but also masks. and reinforces structures that actually make things worse at a macro level. Yeah. Mm-hmm. Yeah, can tell you insurance companies don't like that and capitalism in general doesn't like that, yeah. Right. Fast dating. Well, yeah, mean, we're getting close to an hour. I'm curious. Yeah. Anything, I guess anything else you want to share about where you've been on the journey and yeah, kind of how you see, guess, that you're still young. How do you see the next five, 10 years, the rest of your life? We didn't even really get into partners and whatnot. I'm kind of curious how you... how you plan to navigate this for you. Yeah, no, a lot of great insights there. Yeah, it's tough. Yeah, I'm surprised that a lot of people complain about the whole school, snacks, work snacks. And that's another cultural pendulum, I guess, that has been changing. But yeah, also like what you said earlier about like, how do we manage to get through situations when Yeah, there's a lot of different needs. And I guess something you said even earlier about like knowing when there is kind of an end time sometimes helps, just kind of knowing that they're looking, having something to look forward to can help get through maybe a situation when needs need to be compromised a bit. Well, that's great. Yeah. No, that comes up a lot. so, no, I'm glad to see that's that's helping a lot of people. Well, yeah, well, it be this has been great. Great talking. Thanks for reaching out. And yeah, I guess that I wish I wish you the best. And I might reach out with some with some books on the on the political or psychological side that I've been reading that might be interesting to you and maybe vice versa. But yeah. Yeah, yeah, again, thanks again for coming on and hope you enjoy time with your family. And cut, and that's kind of how I know when to.