#195 - Tracey and Leah

S0 E195 - 6/13/2024
In this episode, the guest discusses how they first realized they had misophonia during their high school years, describing how certain sounds, especially eating noises, triggered intense reactions. The conversation explores the guest’s journey of understanding their condition, including initial confusion and isolation. They share how they sought professional help and found strategies to manage their symptoms. The guest highlights the importance of support from friends and family, and how misophonia has impacted their relationships and everyday life. Additionally, advice is given on coping mechanisms, such as using headphones with white noise and setting boundaries in shared spaces.
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Transcript

Tracey [2:11]: Thank you for having us. Yeah, thank you for having us.

Adeel [2:14]: Yeah, yeah. So do you want to tell us kind of around where you're located?

Tracey [2:18]: Sure. Do you want to say where we are?

Leah [2:21]: We are in Pennsylvania.

Adeel [2:26]: Jenkintown. Jenkintown. Cool.

Leah [2:28]: Yeah.

Tracey [2:29]: Which is right outside of Philadelphia.

Adeel [2:31]: Right on. Right on. Okay, cool. Yeah, that's great. Yeah, so let's see. I mean, yeah, we have Tracy Anley here. Do you want to kind of tell us kind of like what brought you both to the podcast? Like who's got misophonia? And just kind of like we'll get into everyone's stories.

Leah [2:48]: Well, we both have misophonia. And I don't know. How did you find the podcast?

Tracey [2:59]: I think I just Googled it and saw that, wow, there's a podcast. And we started listening to it on our drives to school. Leah goes to my school. I teach at a Quaker school. in Philadelphia. And yeah, so that's how we found the podcast. And as Leah said, we both have misophonia. I've noticed that Leah's misophonia has gotten like a lot stronger over the last year. And yeah, it's becoming much more of an intrusion on her life.

Adeel [3:43]: Yeah. And Tracy, you have misophonia as well.

Tracey [3:45]: I have misophonia as well.

Adeel [3:48]: Yeah. Well, I guess maybe we can go in reverse chronological, I guess, maybe talk a little bit about Leah. When did you first start noticing misophonia?

Leah [3:59]: I think it was like when we were up at my my mom's house this one time she was eating cereal across the table from me and I just couldn't handle it. It like you know for some reason like I just thought like everyone was like a bit annoyed by chewing and I was just like a little bit more. than other people. I didn't know that chewing just didn't really bother people. And then it didn't really bother me for a while. And then I went to school, and I have this friend. This is a different school than the one that mom teaches at. And her chewing, I just could not. I would ask her to chew with her mouth closed. And she just didn't understand.

Tracey [4:50]: And she was one of Leah's best friends.

Leah [4:52]: Yeah. And that was really hard because I couldn't escape that. And... Yeah, and then it like, it just like progressively started getting worse. And every day when I got up for school in the morning, my brother, you know, he would like, we would eat breakfast at the same time. And I would always like bring a blanket down and like put it over my head to like hide from the sounds and like the visual trigger from eating.

Tracey [5:23]: Right. This is sort of before I picked up that this was happening.

Leah [5:27]: Yeah. I kind of like put my head down. Sometimes I would like put the cereal box right in front of him so I couldn't see him.

Adeel [5:36]: Yeah.

Leah [5:37]: Yeah.

Adeel [5:37]: It's funny. I used to do that too now that I recall when my brother was having, but I didn't, I didn't, I don't remember if it was due to sounds or other things. That's interesting.

Leah [5:48]: I know. I just like, yeah.

Adeel [5:51]: Did your, um, you said your, your mama, your grandma, uh, did that happen kind of overnight on one of the trips kind of thing? Or was it like, you know, not a big deal then all of a sudden?

Leah [6:02]: Uh, yeah, it just like, I don't know. I just like sat down for breakfast one morning and it was like, why is everyone chewing so loud?

Adeel [6:13]: Was anything kind of going on unusual about that weekend or week? Yeah.

Tracey [6:21]: I'm wondering if that was... You know, my mom has dementia. Yeah. So, you know, there was, you know, a period where, you know, my dad had died and then she was living alone. And we were going up there a lot to kind of try and take. And it was pretty stressful because we'd go up and there would be all manner of messes. And, you know, it was kind of a disaster.

Adeel [6:53]: maybe maybe you know that that was also in the background yeah it's just i just asked because there's often some something going on unusual um uh interesting uh the understanding data point and then um yeah and then it just started to progress so tracy you said you said yeah you said you have this funny you didn't you didn't pick up on this uh was it just you didn't notice it i was going to ask like were you as a misophone were you maybe looking at for some of this

Tracey [7:22]: um yeah you know like i you know of course hope my kids wouldn't get it yeah and and actually for for me um uh you know also i was was always worried that like maybe my kids would become a trigger and unfortunately uh uh her her brother um his his chewing bothers me too and so bad about that and i yeah i feel terrible about it you know like and it didn't it didn't bother me until you know i don't know last couple of years maybe yeah it doesn't usually when they're first born and yeah when they're little it was more when he was like you know I don't know, baby, teenager.

Leah [8:07]: Yeah, I think your brain just, like, kind of knows it's not a threat. Like, when you first meet someone, usually they're not triggering to me. Because, like, it's like, you know, you just met them. Can you, like, give me a break for a little bit? And then, like, you know, like, when I first came to the new school, no one really triggered me at first. But then, like, after, like, a month or so, or probably a little bit less than that, they started triggering me, like, a lot.

Adeel [8:39]: Mm-hmm. Mm-hmm. Yeah. Interesting. Okay. And so I guess maybe leave it for you. How long has it been, then, since you've had misophonia? Because you're still in school.

Leah [8:51]: I don't know.

Tracey [8:53]: When do you think? Yeah. I don't know that the incidents that like Leah with the friend, I think that was like around four. Was that after COVID that when you went back?

Leah [9:07]: Yeah. Or was it pre-COVID? That was like.

Tracey [9:10]: So that would have been third grade? Third grade, yeah.

Adeel [9:13]: So on eighth or so.

Tracey [9:14]: And Leah is currently a seventh grader. So that's. Yeah.

Adeel [9:17]: Gotcha. Okay.

Tracey [9:18]: And the incident with my mom would have been earlier than that.

Adeel [9:22]: Yeah.

Tracey [9:24]: Yeah, that might have been like second grade.

Adeel [9:27]: Gotcha. Okay. And then you did mention visual triggers as well. So it seems like they kind of came on also pretty quick.

Tracey [9:35]: yeah and and you know she's added triggers because uh it's a lot of the classics i mean like now now that i see other people i'm like oh yeah i've got this i'm not very creative i have the same triggers that everybody else has yeah yeah it was hard for me because

Leah [9:57]: I think my mom is a teacher, so she would be on Zoom and teaching her class. And she would be in this room. And I would be up in my room doing my work, I think. And I could hear kind of what she was saying, but not quite. And it was kind of distorting that, like, set me off. I could not listen to that.

Adeel [10:21]: The kind of muffling that you hear through floors.

Leah [10:23]: Yeah, the muffling, like, voices.

Tracey [10:25]: yeah yeah yeah i would like try to shut all the doors and like yeah and we had we had again like leah in you know her room callum in his room Dad was sometimes here in the bedroom and I was out here. So yeah, there's no escape.

Adeel [10:44]: Yeah, right. Yeah, COVID was interesting. That's kind of the last thing I want to get just before COVID is new misophonia. Okay, interesting. And I guess, how are your other, your brother and your other family members who don't have misophonia kind of reacting? Like, how do they treat it?

Leah [11:03]: uh yeah like we went to a restaurant a couple days back and like usually oh wait okay so yeah usually like wait so when we eat at home Like we all sit on the couch and we- In a line. In a line. My dad's chewing does not trigger me. I don't know why, just like it doesn't trigger me. So I usually sit next to my dad. Like we all have like spots, squares on the couch. And yeah, we eat with like the sound, the volume up. And if there's like a quiet moment or like- Like it stops for a second. We pause it. Everyone like stops eating.

Tracey [11:47]: Yeah. We have a saying, no sound forks down. So we don't start eating until like the TV's on and the sound is up. So we have like, um, yeah, background noise.

Leah [12:04]: okay okay and everyone in line on this okay so so they're at least it's not like they're at least understanding and accommodating yeah and we went to a restaurant like what i was just saying a couple like weeks ago and um like i was being like triggered because like it wasn't it wasn't that loud there and like we had like our extended family there and i don't think they know about

Tracey [12:29]: yeah i don't think they they do now um and actually but it's interesting because like pop-up and tear and um terry like they're all like kind of like oh yeah like which makes me wonder they might yeah they might have um some like variations some variation on misophonia

Leah [12:51]: But I was sitting next to my dad and actually my great uncle got me a sound machine. Anyways, I had he was like trying to distract me with like he was playing a fan noise and we were playing like Mastermind on his phone and I got like really bad. So we like just got up and like took a walk outside of the restaurant. And that was nice. Just like, wow.

Adeel [13:16]: Yeah. Gotcha. Okay. And, um, yeah. And Tracy, maybe do you want to go back to kind of like when you first noticed it? I'm assuming was it around childhood? Yeah.

Tracey [13:31]: You know, so for me, um, you know, cause because I didn't, I didn't know it was a thing. Um, you know, I had a lot of. theories to explain. But for me, like it definitely emerged around like third, fourth grade. And it was at the dinner table. It was like my sister's chewing and my dad's chewing and my mom's breathing. So mom loud breathing and my dad and my sister, you know, loud chewing. But also around that time, my sister had an eating disorder. So, you know, the dinner table was also kind of like a battleground. Also, because there's always like a lot of conflict because they'd be trying to get my sister to eat and she wouldn't eat. And, you know, it was a lot of fun. a thing yeah um uh yeah so there was a there was a lot of like uh kind of trauma drama around around like eating so it like made sense to me that that was a thing but then like then at school like in fourth fourth grade i distinctly remember this like um david keller still remember his name sat behind me and sniffled like david that's such a david thing to do Right. And yeah. And so I just, you know, I was like, what the heck? You know, I thought this was I thought this was just because, you know, because of how horrible eating is right now for everybody. But then like the sniffle and then, you know, and then like I had another friend who was sitting in a squeaky chair and like the squeaky chair and the sniffle like was like killing me.

Adeel [15:26]: Yeah, somehow generalized. That's interesting. I mean, your initial theory kind of, yeah, that makes sense around the trauma drama, which is another meme I want to borrow. But yeah, it's funny how, well, not funny, but it's interesting how it just seems to generalize to a lot of things that you're, I'm assuming it's like you had the fight or flight danger.

Tracey [15:46]: Yeah. I'd want to kill them. I'd want to turn around. I want to kill David, too. Sorry, David. I didn't do that. The other thing with me, and I think with a lot of misophones, it seems like I also knew it was totally irrational. I didn't really feel like I could... you know, say to David Keller, you know, because the poor guy was congested, you know, like that, whatever, you know. So I didn't really feel like I could, you know, really ask him to not sniffle because I knew he couldn't not do that. So I like... And it also seemed totally irrational to be so angry about sniffling. So I thought something is obviously wrong with me. Well, that's interesting.

Adeel [16:45]: You didn't feel like, because a lot of us, well, it's interesting that you at that age were able to rationalize that. it's not his fault because sometimes we we have this part of the back of our mind is like they're doing it on purpose kind of thing um but you know but it's that's interesting that you know you caught that at an early age we're able to rationalize that

Tracey [17:08]: Yeah. Yeah. I mean, for better or for worse, though, because it also I think like maybe it was compounded by the fact that I never felt like like I had the ability to speak up or ask for someone to stop doing something. So I also, my bedroom was right above the living room. So like the muffled sound of the TV would drive me nuts. I like developed a way of sleeping, holding my, you know, sleep, lay on my back and I'd hold my ears and be able to go to sleep that way. Because again, I was like, it's irrational. I can't, you know, I didn't feel, I didn't feel like able to like go downstairs and say, could you turn the TV down?

Adeel [17:56]: Gotcha. Gotcha. And was it just because of, was that the only kind of issue that you weren't able to, that you felt you weren't able to get accommodations for? Or like in general, was your family, you know, pretty open to feedback?

Tracey [18:12]: I don't know. Like I said, that time period and, you know, my parents were like lovely people, but they're pretty volatile people. And, you know, yeah. And like everything was real. Like my sister was such a like so in crisis that I felt like it just felt like, you know, like there's a fire going on because my sister was like severely anorexic at this point. So she's like, you know, five, seven, 80 pounds. Like my little noise thing just seemed kind of like. like kind of a minor, a minor issue compared to like the much bigger fire that was going on.

Adeel [18:59]: Gotcha. Gotcha. Yeah. And okay. and so you kind of bottled it up and it just every night was probably kind of torture listening to uh um the tv and whatnot um and and for you as well like visual triggers were they kind of like popping up too yeah a little little bit you know like so yeah like i didn't have to hear them if i saw them chewing and i just like What about friends? Did you confide with anybody? You couldn't tell at home.

Tracey [19:30]: Not really. Not until later in life. I can't even remember if I told people in high school. In college, yes.

Adeel [19:48]: What did you tell them? Because you didn't know what it was at that point. Yeah.

Tracey [19:54]: I didn't know, yeah, I didn't know what it was, but, like, so, I don't know, like, the one thing I remember, so, when I was in college, there was a day, like, my mom and her aunt had been downtown, like, we, I went to school in Philly, and they had come downtown for something, and we were hanging out, and we were, like, I don't know, like, on this tour, and, like, this church, and it was, like, quiet, and my mom's, like, like chewing gum and oh my god it was like a disaster um and then you know i went went back home they went they went back home uh but on my way home i ran into these women who invited me to a buddhist meeting and right and i went and um uh At the Buddhist meeting, they were saying that Buddhist practice was about developing a happy state of life, no matter what your circumstances are. So I thought, because as I was being triggered, I was like, I don't know what I want in life. I just know that I want to be happy. So anyway, these people said that this is how to be happy. So I was like, okay, I'm going to give it a try. And so, you know, I decided to try practicing Buddhism, which involves chanting, so it's not silent, which I think probably wouldn't work for me because I'd be sitting there, like, being triggered by all noises, but it's chanting, so you're, like, actively making sounds.

Leah [21:27]: So it's like someone's, like, sniffling. You just chant louder. Chant louder.

Tracey [21:31]: Exactly, exactly.

Adeel [21:34]: Just make sure the chant's not, shut up, shut up.

Tracey [21:38]: That's usually our chant. But anyway, so I became a Buddhist as having pretty much decided I was an atheist. I overnight decided to become a Buddhist.

Leah [21:58]: It's an atheist religion, so.

Tracey [21:59]: Yeah. Right. So it works. But anyway, so I had an altar in my room. I lived in a big house with a lot of people. Um, which yeah, it was another thing.

Adeel [22:13]: Yeah. I was going to ask that later.

Tracey [22:16]: Like fortunately, like there was one bedroom on the first floor and all the other rooms were on the second and third floor. And I was kind of like isolated. It was, it was perfect actually. So that, that worked out well. But anyway, I had this altar and this friend that I had met, like, um, came into my room for something and was like, wow. And he immediately asked, what made you decide? That seems like kind of a drastic move. What made you decide to do that? And so I told him about my misophonia. That was my goal. of Michael and Parise. And actually, I think Michael also, you know, just recently in the last, like, few months or whatever, I finally put it together that Michael also has misophonia. But he didn't say that at the time. And at the time, like, it didn't occur to me that this was a thing. So we didn't, like, really, like, oh, I have that, too. But, like, he definitely had that, too, has that, too.

Adeel [23:23]: interesting okay and um so you know so i'm curious kind of like you can well convert it or you start practicing buddhism did it help with misophonia like um actually it did yeah um yeah and and in fact um i think quite a bit because i i think it like really changed the trajectory of my life um

Tracey [23:46]: Because at the time, though, I was disappointed because I was hoping I was going to like chant, you know, like the mantra. And I would not have misophonia anymore. But it didn't work that way. um so do you use it when you're being triggered to kind of like redirect your thoughts or something or i i do and i also just i also just just like the practice like i chant you know usually twice a day like in the morning and then again at night before i go to bed and I find that if I do that, it helps me just be more grounded so that when I'm assailed by sounds, the sounds are the same, but I can respond differently.

Adeel [24:37]: Can I ask how long do you chant for? Is it a mantra, the same mantra morning and evening?

Tracey [24:43]: Yeah, so it's the same. We chant, the phrase is Nam-myoho-renge-kyo, and then we also do a recitation from the Lotus Sutra. And that can be, I can chant anywhere from, you know, like five minutes to, you know, hours.

Adeel [24:59]: Yeah.

Tracey [25:00]: But depending on like what is happening in my life and whatnot. Usually I try and chant, you know, like, I don't know, about a half hour in the morning, a half hour at the end of the day. It's sort of my steady state.

Leah [25:13]: gotcha gotcha okay interesting and uh leah have you have you um has this passed on to you a little bit are you uh yeah yeah yeah it it does help to like to just be able to like you know and uh we also go to like um buddhist meetings and yeah i help out there as much as i can

Adeel [25:37]: No, that's great. I mean, because, you know, I'm 47. I just found out about, well, I knew about Miss 20, but I just found out about things like the nervous system and how important it is to just calm that down. I didn't even know what the heck it was. So I've been looking to try to, you know, establish a meditation practice or something. So this is kind of inspiring because, yeah, I mean, whatever I feel like can give you control over your nervous system. And I think awareness of your senses is going to help because I think a lot of this is just a nervous system just being overactive, but also I think feel like some kind of dissociation with our senses. And I don't think hearing like misophone, the sound part is the only thing. I think it's something else that is much more multisensory. So I think it's great what you're doing. It's great that it's helping. It seems to be helping a little bit, but maybe not 100%. There's obviously still misophonia going on.

Tracey [26:34]: Yeah, I think for both of us.

Adeel [26:37]: Do you feel like it at least kind of gets you back to, you know how sometimes when we're completely caught off guard and triggered, it takes us like hours, sometimes days to get back to norm. Does it help you in that recovery? Because even that's valuable.

Leah [26:54]: Yeah.

Tracey [26:56]: Yeah, yeah, for sure. Like, I feel like I feel like I no longer have that. Like, like, that's something I feel like I don't have anymore. Is that lingering?

Adeel [27:07]: Yes.

Tracey [27:08]: It's like, if I can, if I can remove myself from the situation. I'm good.

Leah [27:13]: Yeah, I can just, like, ruin your day. Like, I'm just, like, taking a deep breath. Like, we went to, like, this, like, color day thing at my old school today, and this guy, I don't even know, like, what he was doing, but he was just, like, triggering me with, like, a mouth sound.

Adeel [27:29]: Was it David again?

Leah [27:34]: Haunting your family. And then he was, like, sitting next to me and my brother. And then these other people came with, like, these, like, pastries. And they sat at the other side of me. And I was just like. Oh, no. But then they counted. So it was okay.

Tracey [27:51]: Yeah.

Adeel [27:52]: Gotcha. And Leah, how about in school? Do you get any kind of accommodations?

Leah [27:58]: Oh, yeah. Yeah, yeah, yeah. For testing, I take tests in a different room. And I just wear earplugs the entire day at school. Like I can't like one time I forgot one of my earplugs complete like panic. Yeah. Panic. Like I didn't know what I was going to do, but then I found my friend. I think she has something like misophonia because, yeah, she also gets, like, triggered.

Tracey [28:32]: Right, and it also happened to be carrying earplugs, which is unusual.

Leah [28:35]: Yeah, also, we always, like, complain about, like, we have, like, code words for someone's triggering me and, like, and, yeah, this guy in particular triggers a lot. Michael? yeah so earplugs are good enough for you because i mean you could probably still hear some triggers right yeah i can so yeah he sits next to me and some classes and sits behind me which is really bad but i sent an email to my teachers about it like explaining this I don't think my math teacher really gets it, but I don't think he needs to. I think he just needs to move me to where I need to be. But yeah, he did that. And that's like, that's good. And yeah, like.

Tracey [29:23]: And your, your homeroom. teacher and science teacher has been really, really... Yeah, she's been really accommodating for me. Yeah.

Adeel [29:32]: How about other friends? Sorry, go ahead.

Tracey [29:34]: Yeah. In theory, also, Leah, just fairly recently, because I was like, gosh, it's great that during tests, Leah can take it in a quiet room. Um, but like, you know, it doesn't help like during lectures, if you have to like have earplugs in, hold your ears, whatever, um, or leaving the room isn't the answer either. Cause then you miss everything that's been, you know? Um, so, but I, but I felt like a lot could be, you know, just, just knowing you can move. I think like knowing, um, in terms of the fight or flight, I think like knowing that you have a little bit of control.

Leah [30:20]: Yeah. And we go to a Quaker school, so there's something called Meeting for Worship, which is kind of a nightmare.

Tracey [30:29]: It's a misophones nightmare.

Leah [30:31]: Yeah, it's so everyone, like pretty much everyone sits in this... echoey room with and it has to be completely silent completely silent the entire time it never is except for all the trigger sounds they say it's completely silent but it's not like yeah they think it's right yeah oh those are all my great one person that's sitting behind you and like sniffling or chewing gum or like wait so they let people chew gum They let people eat in class. I was sitting in my math classroom this one time and some girl was giving out gum and she had a cupcake and strawberries and she was just smacking her lips and I was like, can I go to the bathroom please?

Adeel [31:30]: And Tracy, is this the school that you're a teacher at? Yeah.

Tracey [31:33]: Are you able to kind of like... Yeah, so I have been advocating with her homeroom teacher who's the advisor. So I'm not in the same division as Leah because I teach in the upper school. She's in the middle school. But I have like talked to the school psychologist. I've also talked to... the uh person in charge of the accommodations which you know we we put the quiet room in place also um in her learning plan is something that says she can like get up and move if she needs to, you know, like the back of the room or, you know, or sometimes I think having the sound right behind you is like the worst, I think.

Leah [32:23]: Yeah.

Tracey [32:25]: So, yeah. So there's some ability to like move around. The problem is there's also a lot of, I don't know, some classes you do some small group work.

Leah [32:36]: Yeah.

Tracey [32:36]: And then if you're paired with the, you know, the snuffler, that's really rough.

Leah [32:41]: Yeah. She was telling me that we were going into, like, a robotics project, and it was going to be, like, really loud, and she was wondering if I was going to be okay. But, like, that's kind of better if everything is, like, going on and, like, everyone's talking because then you can't really hear it, you know, and that's, like, better.

Adeel [33:02]: Yeah, get that robot's motors going and get that background noise.

Leah [33:06]: Yeah. And it's also really hard because the person that's the most triggering for me is in all my classes, my homeroom. Yeah. So, but my art class is like, I try to get my teacher to play music, but then like, like, cause like, you know, he can play music. He sometimes plays music for us and I ask him if he can play music or my friend asked him if he can play music. And like, he plays music for a little bit, but then it like, just like goes off for some reason. Like,

Adeel [33:44]: He plays one song.

Leah [33:45]: Yeah, like, one song, and we're like, are we going to play another? Yeah. But then, yeah, like, one time, like, it was just so bad, and, like, we asked if we could just, like, stand outside the classroom for a minute and, like, collect ourselves. Because she's something that's, like, kind of like my schizophrenia. I don't know. Yeah, we complained.

Adeel [34:08]: Your friend, you said?

Leah [34:10]: Yeah.

Adeel [34:10]: Okay.

Leah [34:11]: But the rest of my friends... Like when I tell them, when I told them about it, they were kind of like awkward about it. And like, oh and then they like kind of just like you know forgot about it but like i didn't expect them to really like take to it and every time i say it they always like oh you mean like this and then like you're right yeah you have to make the sound yeah yeah like that yeah we gotta work on that and yeah like every lunchtime like I sit down. I try to be the last person to sit down.

Tracey [34:53]: So you can strategically position yourself.

Adeel [34:59]: I hover between tables and then you don't really have to sit down.

Leah [35:04]: Our school doesn't have a cafeteria so we sit outside or in an art room. Recently we've been sitting outside because it's nicer weather so it's quieter. And, um, we sit on this little ledge and then my friends, my friends, I think some of them like to hear themselves chew.

Adeel [35:26]: Yeah. I've wondered that as well. I feel like for some people, I feel like it's part of the experience of eating for something or something like that. I don't know. But maybe that's, or maybe that's what I missed on your brain.

Leah [35:37]: Maybe that's just like my mind, your brain being like, right. But yeah, I try to like, like i love her but like i try to like not sit near when she's eating because i think she yeah i think she likes that sound and you know i've told some of my other friends in like classes and uh she she tries she's a sniffler so she tries to stop sniffling for me and that's really great and i told my other friend and she was like whoa you wear earplugs that's so cool and yeah

Adeel [36:22]: And you said, Tracy, you said at the school, there's a psychologist. Did the psychologist know about Miss Phonia at all?

Tracey [36:30]: She does now.

Adeel [36:32]: You locked her up in a room and you- She did not.

Tracey [36:35]: She did not really know much about it. But she did send me, like she reached out to someone and like, that's how I found out about the So Quiet thing. Um, so she sent me a lot of resources and actually, um, Leah was supposed to have, uh, like, uh, a therapy check in appointment. but we had to cancel it because of the stomach bug. But she has a first therapy appointment next Wednesday. The person is not, like, doesn't specifically work with misophonia, but it's really, I haven't really found anyone locally who does. And the person does, like, Leah is really, really artistic. She does a lot of, like, visual art stuff. And the person works with expression and art.

Leah [37:39]: Yeah.

Tracey [37:39]: So I thought, and she works with... children through adolescence. And she also said that if this isn't working, we'll start here. And she referred to someone else in her practice who does DBT, which I... Right.

Adeel [38:06]: It's a variation of CBT, I believe.

Tracey [38:08]: Right. So, I don't know. Well, we're at least like starting to try and get Leah some help. And yeah. So, because I, you know, I do, I feel urgency about this, but I, you know, kind of like, yeah, where to go, where to find help. there are i'm i'm encouraged by how many people are you know like the research community seems like research is like sort of taking off and on misophonia so that's encouraging um but it's hard to get like some immediate therapy slash relief. Um, and yeah, so we're looking, looking for that. I was also, I wanted to say, I was really encouraged and it made me think that, you know, perhaps Leah and I can do something at my school, like, um, Paige and her, her dad.

Leah [39:09]: Oh yeah. Yeah.

Tracey [39:10]: Um, you had a guest on and I don't know from what year, cause we were not necessarily listening to things in sequence, but you had a, a guest on who was also, I think in like middle school or high school.

Leah [39:21]: who had, you know, done some... Yeah, that kind of inspired us to go on the podcast, I think.

Tracey [39:26]: Yeah.

Adeel [39:27]: Yeah, there's been quite a few who were right in school.

Leah [39:31]: I remember, like, specifically that she was, like, she had, like, a speech and her dad was, like, underneath the bleachers because he was a visual trigger to her. Yeah.

Tracey [39:42]: Yeah, which that was also, because one of the things like, you know, I've been, you know, misophonic most of my life, but I've never been on the other side of it, like as the trigger, because like, I know I trigger Leah, and sometimes it makes me angry. Yeah. But I know just the same as I know. It's not rational. It's not personal, right? It's not like she hates me. She hates the sound I'm making.

Adeel [40:15]: Right. Yeah, that's good. At least you have the perspective because, yeah, most people immediately will get defensive because it's... they're supposedly not making any unusual sound. So that's cool. Yeah, it'd be interesting to hear kind of what happens. Because you're right, with the therapists, because most of them, if they exist, they're all booked up because of the demand for misophonia.

Tracey [40:39]: Right, because we did reach out to somebody who said that they work with misophonia patients, but they did not respond. They were like, yeah, we have a waiting list.

Adeel [40:50]: Yes. Yeah, there tends to be a big waiting list. Unfortunately, hopefully that will change with more awareness and research. Although the research is going to take time. And it's, I don't know, in my opinion, it's a little bit too incremental. But that's a whole other conversation. What about other, we don't have to get into them because a lot of us have like overlapping conditions. I'm kind of curious if either of you have noticed anything like, you know, a lot of people have ADHD and things like that.

Leah [41:22]: Well, my friend, she lives, like, oh, right, my neighbors. Like, they're probably, like, I've known them forever. And, like, yeah, but they pretty much get it. Yeah, like, they're very accommodating for me. And my one friend's a sniffler, but she does this. noticed like if she sighs right after she sniffles it makes my brain think that she's sighing not sniffling so that helps a lot so she disguises the sound yeah oh that's that's interesting i know it's so nice and also like whenever she's eating she'll like go in another room for me really nice and uh yeah but anyways um

Tracey [42:12]: But your question about ADHD or OCD, not that we know of.

Leah [42:19]: Yeah, that one was recently diagnosed with OCD. It's all good.

Adeel [42:28]: It's all good. However you want to get around it.

Leah [42:30]: Yeah, she was diagnosed with OCD. And she was talking about it. And I think it related a lot to me. Who? Emily. Oh, Emily. Yeah. Yeah, like it related a lot to me. So I was like, oh. Yeah, so I don't know.

Adeel [42:47]: Yeah, that's interesting. We did say earlier about how you said your friend was disguising a sound with a sigh. Because that is part of some research and some therapies is to try to think, try to attach a different source to the sound in your head. But it sounds like your friend was doing it on purpose. That's kind of cool.

Leah [43:07]: Yeah, yeah. Like when... when she, like when you saw you breathe in and then you breathe out. So she, so she breathes in sniffles at the same time, kind of, and then she breathes out. Yeah.

Adeel [43:20]: We'll have to get her to do a tutorial on YouTube or something. Yeah. People get, get trained David.

Leah [43:27]: Yeah. In Michael. In Michael, yeah.

Adeel [43:31]: Yeah, in Michael. Interesting. Tracy, we were, let's not use earplugs. What about coping methods for you when you're out in the world?

Tracey [43:41]: Yeah, so I'm, So I'm a teacher. Oh, yes.

Adeel [43:49]: That's another thing I'm going to ask you.

Tracey [43:50]: So it's like an interesting thing. So like with, you know, usually the classroom, there's like enough activity that it doesn't bother me. Sometimes, however, like during when kids are taking tests, I do like deliver tissues to kids. Yeah. Take it or you fail. Actually, as a teacher, I can also tell people that they can't... I say, you can't chew gum. If I hear it, you can't chew gum.

Adeel [44:20]: That's a good compromise.

Tracey [44:21]: As long as I don't notice that you're chewing gum. If you make it noticeable to me, then you must spit it out.

Leah [44:27]: Also, I find that... um the face that michael makes when he sniffles is triggering it's kind of just like a meh face you know like it doesn't it doesn't like it's gonna be hard to explain but like it doesn't bother him and it just makes me get so mad like angrier

Adeel [44:52]: So it's the expression he makes when you notice that he is triggering you?

Leah [44:57]: Or is it just... No, just like if he sniffles and I see it, the face that he's making while he sniffles also triggers me.

Adeel [45:06]: Okay. Cause it sounds like he's just, he thinks it's normal. I think I know what you're talking about. It's just that.

Leah [45:11]: Yeah.

Tracey [45:12]: It's just like that. Yeah. Whatever. I'm driving you nuts. Yeah.

Adeel [45:16]: Gotcha. Okay. Interesting. And yeah, go on.

Tracey [45:22]: Yeah. I was going to say, yeah, like I, I don't use earplugs cause I, I find that they block out, like they block out a lot of sound and then all I focus on is the trigger sound. so um but i do use noise cancelling headphones so like in my like we have a shared office of the whole all the teachers in the science department as well as the our office is kind of like chaos so um so i wear noise cancelling headphones but nobody thinks that that's terribly unusual because it's like

Leah [45:57]: Yeah. Kind of chaotic in there. Right. There's like one person that, that hums.

Tracey [46:02]: Oh yeah. Humming. That's another. Humming. Keyboard. Like I have a coworker who's like funks on her keyboard.

Leah [46:08]: It's not even like bad humming. It's just like, I don't know. It just bothers me. And she, like she sniffles. And like one time she was just like talking while eating. Like whenever I go into the office and like. Oh, no. And there's these kids that hang out and they're sometimes and like they're like talking and they're exchange students. So they're talking in a different language, but they're like talking and like goofing off and like having a good time and being happy. But just triggers. I don't know why. I wish it didn't. I feel so bad. And that reminds me like when when people are like talking and eating at the same time. We were at the cabin that one time and we were all playing a game together at the table and mom made popcorn and everyone was like talking and like eating the popcorn and like chewing like loudly and I like went in the bathroom and like collected myself and like and then I came back out and then I was able to handle it for a little and like

Tracey [47:20]: Now we have a popcorn room.

Leah [47:22]: So whenever we're eating popcorn, now since they know that I have mystifonia, every time we go to the cabin and we're playing a game and we have popcorn, the popcorn's in a room. So when anyone wants popcorn, they go into the room and then eat the popcorn. Yeah. And it's really helpful.

Adeel [47:42]: Yeah.

Leah [47:42]: We've made some adjustments.

Adeel [47:45]: Sometimes it just doesn't take much. Very cool.

Tracey [47:54]: I don't know. I think I was just ranting about my office. in general, I think, you know, I was saying this to Leah, as you get, as you get older, you know, I think it's like the worst when you're, when you first, you know, first onset. Cause like you have so little control over your life when you're in middle school, elementary school, middle school, high school. Cause you know, you have to be, you're, you have to be in this room with these people, you know, like, and you're around a lot of people. I think as you get older, you have a little more control and it becomes easier to manage.

Leah [48:31]: You might isolate yourself and then become completely... Right, yeah, the worry is.

Adeel [48:38]: Right.

Tracey [48:40]: Yeah. This is kind of like a little bit of a turn, but one experience, like a big... maybe turning point in like my misophonia journey was like, as a Buddhist, sometimes we have like, we chant in groups sometimes, like we chant by ourselves, but we also gather in meetings and chant together. And for whatever reason, there was this thing that we were going to chant for a really long time, for hours. So I decided I was going to participate in this. And chanting for hours, it was a thing. But I was really chanting about my misophonia. And I had this imagery of ripping it out by the roots. um like taking the music like ripping it out by the root so i would just you know get rid of it um and um And I don't know, in the whatever hour of Channing, that image started to change, where instead of ripping it out, it was this idea of not feeding it and allowing it to die. and feed the soil, right? Like nourish my life, feed the, feed the soil rather than like this, like violent ripping out. And, and actually like learning about the, the research on, you know, how this could be some like vestigial thing of, of self-protection and protection of the colony, protection of the, the community and,

Leah [50:44]: um it may go back to evolutionary kind of yeah like that like yeah like it's not just like this it's not just this evil thing right i totally agree and it's like for a purpose yeah i love that analogy where they were talking about like i would survive so well in a zombie apocalypse right i would be able to hear them like breathing loudly just yeah

Tracey [51:06]: Yeah.

Leah [51:07]: The dragging footsteps. I hate that. Yeah. You drag your heel a little bit. It doesn't take much.

Tracey [51:15]: Yeah. But that's like, yeah, like that ability to sound the alarm. So it really made me like, it changed my relationship with Zephonia. Not just hate it. To sort of see that maybe... you know, is part of who I am, part of like what's made me who I am. And that, you know, without it, I, you know, like all things that happen to us there, you know, like we can transform whatever it is, you know, like there's a saying in Buddhism to change karma into mission. um and uh you know so like whatever whatever the karma whatever karma is it's not just it's not just all all bad it's like for a purpose um and so you know i really feel like like the misophonia is not necessarily my enemy um And I loved how some of the people that you've interviewed have talked about sort of also talking to their their like misophonic person saying like it's okay i'm not you know we're not in danger yeah i do i do i do that sometimes like when yeah when i just take a deep breath and like why does this bother you doesn't have to bother you right and it helps it helps it helps me not hate it like oh i'm i'm being triggered but that's not a threat it's okay and and yeah yeah yeah it also like um

Leah [52:56]: Like whenever like someone's being annoyed by a sound, it's like, haha, it annoys you. It's not me this time. Like the sounds that annoy, like, I don't want to say normal people, but like. Oh, right.

Tracey [53:09]: When somebody is just being irritated by a sound.

Leah [53:11]: It doesn't bother me at all. It's like, whatever. But like, and then when they're like, oh, it's the most annoying sound in the world. Like, come on, guys.

Adeel [53:22]: Yeah, there's definitely a difference. Yeah, the difference between fight or flight and just regular annoyance. Yeah.

Leah [53:30]: Such an intense, like, anger that I just, like, have to cry. Like, you know?

Adeel [53:35]: right right because i think it is it is like i think trace you're saying it's there's something it's tied to something very deep um that is not necessarily like i think you both recognize is is acting in good faith it's not necessarily like a defect which in our society everything has to be like a medicalized defect that we need to like throw away but there's something positive about it that may have whether it evolved over you know thousands of years or something we were predisposed to that maybe got switched on because as our family life was kind of chaotic or something there's something um yeah i do believe that it's um i always yeah it's kind of kind of i always kind of like grimace when somebody talks about it as something is inherently negative like a defect so i love that analogy and that the imagery that you just had about the um yeah the roots and replanting the soil because i think that's where we're at or at least that's where i am i'm like i i believe all that now it's like how do we transform it out of it or um or feed it in a way that can it's it can be used for something more productive

Tracey [54:47]: right like what you're doing and you know like um you know doing this podcast and you know yeah because i think also like it's huge to just be able to like talk about it for a while because like whenever i talk about it like with your friends they always like shut you down

Leah [55:03]: And, like, you have to put that emphasis on it, like, the feelings that it makes you feel. Like, they won't listen to me unless I tell them, like, this is going to make me cry if you don't stop chewing. Like, unless they don't, like, hear me if I don't put that emphasis on it.

Adeel [55:22]: Right.

Leah [55:22]: Yeah. Except for, like, you know, Emily. She, like, Emily and Alina, they, like, understand. Like, Alina, it's like... You know, she kind of has it. And then Emily, she just, like, knows me so well that, like... Yeah. She just, like, understands.

Adeel [55:42]: And sometimes I wonder now if it's... In this... I feel like one of those people... In this day and age, like, we're supposed to just kind of conform to the same reactions to everything. I feel like if this was around... You know, this doesn't just start, like, a few decades ago. I feel like a long time ago, I think people were... you know you were not as connected to every single person in the world so you can kind of be yourself and you had your kind of role or you were the maybe the sensitive person you had this talent or that talent i feel like now we just have to we're supposed to think and feel the same way and that's not helping yeah yeah like we're all supposed to be normal right Right. No, this is great. So we're getting kind of flew by as it always does. We're about an hour into it. This has been great. We've covered a lot of great ground and I love how we kind of ended on one of my favorite kind of like angles on Misophonia. Anything else you both want to share about your journeys or what you've thought about? Not to put you on the spot, as I always do.

Leah [56:55]: Oh, just, like, I was filling out this survey, and it asked, like, it was talking about, like, what kind of learner you are, or, like, what mindset, I don't know, something like that. And it asked, like, would it, like, change your life dramatically if there was no music? And I said, I said, yes, because not in the way that you would think, like, I love music, but no, it's just like, whenever we're in the car, it covers up my triggers. And that's why. Yeah. We need that. The window or like put the window down. Yeah.

Adeel [57:44]: Yeah, that's kind of my go-to. I don't use earplugs so much because I just need to have something on top.

Leah [57:49]: But at school, you just, like, you can't have that.

Tracey [57:54]: Right, you can't have that kind of noise all the time.

Leah [57:57]: Yeah, so I use earplugs because it, like, softens all the sounds. And, like, I can still kind of hear people most of the time. Like, my friends sometimes, like, whisper to me during class. I'm just like... Uh-huh.

Adeel [58:14]: Right. Cool. Well, I mean, yeah, Tracy, this is great. Like, I can't wait to get this published and you guys can listen to it on your way to school. But this is great. Thanks for coming on. And yeah, I know it's going to help a lot of people.

Tracey [58:30]: Yeah. Thank you so much for doing this. I think it's really, you know, like I, you know, just, I'm sure like so many people like myself, like, um, you know, live their life just thinking they were, you know, a little, a little something, a little something off with that one.