Liz G. - Navigating misophonia with humor and therapy.

S5 E14 - 1/15/2022
In this episode, Adeel talks with Liz, a Canadian from Toronto who shares her experience with misophonia. Highlighting being a misanthrope and finding humor in their similar disposition, they delve into Liz's struggles with postpartum depression, other comorbidities, and the challenges of raising a lively son during the COVID-19 pandemic. Liz reveals her late diagnosis of misophonia and her reluctance to discuss it outside therapeutic settings, although she has found solidarity in therapy groups, especially a parenting therapy group. She emphasizes the importance of dialectical behavior therapy (DBT), particularly in distress tolerance and mindfulness skills, as crucial for managing misophonia. Liz's journey reveals the power of community in navigating the complexities of misophonia and the effectiveness of specific therapeutic methods in coping with its challenges.
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Transcript

Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 14. My name's Adeel Abad, and I have Misophonia. Another episode a few days late, but I'm happy to bring my conversation with Liz, yet another Canadian living up in Toronto. We talk about being a misanthrope, someone who doesn't necessarily like a lot of humans. And for a couple of misanthropes here, we share a lot of laughs. We talk about postpartum depression, other comorbidities, raising a lively son during a pandemic, as well as dialectical behavior therapy. And I'll have a link to some information about that in the show notes. Please follow the show on Instagram at Misophonia Podcast, also on Facebook, Twitter at Misophonia Show, and sometimes on TikTok. If you like this episode, you can leave a quick rating or review wherever you listen to the show. A lot of people have been leaving ratings on the new Spotify feature. That's great. Thank you. All right. Now, here's my conversation with Liz. Well, then I'll just say welcome, Liz, to the podcast. Good to have you here.

Liz [1:11]: Thank you. Glad to expose myself.

Adeel [1:15]: Yeah. Well, that's what it is with a lot of people. More and more now, it's the first time they've talked to anybody with misophonia. So it's, I guess, well, yeah, maybe we'll start there. Is this something that you've, you know, we'll talk about your history, but have you talked to anybody else about misophonia?

Liz [1:35]: Um, recently, yes. Uh, no, I was diagnosed only, hmm, in the last four, three or four years. Yeah. And, um, before that, I just thought I was nuts. But, uh, I, even learning what it was and that sense of relief and having a name for something and knowing that it's not, I'm not being an unreasonable person. Right. I didn't really and I still don't actually trust telling people about it. But I have recently in certain therapeutic settings started to discuss it and I have come across maybe one other person who has it and knew what it was and one other person who had learned about it from somebody else that they were providing therapy for.

Adeel [2:35]: Oh, gotcha. Okay, yeah. I mean, just all interesting stuff. We'll get into that. First, maybe, you know, whereabouts are you?

Liz [2:43]: Toronto.

Adeel [2:44]: Toronto. Okay, cool. Yeah, I used to live at Young and Lawrence very briefly when I was on a co-op term when I was at Waterloo. I grew up in Ottawa, so I've obviously been to Toronto many times. So, okay, okay. And I guess, what do you do up in Toronto?

Liz [3:03]: um i'm a single mom of a five-year-old boy and that's pretty much it okay yeah i uh unfortunately i've got a whole lovely uh list of diagnoses that i could go into but i'm on disability

Adeel [3:23]: Gotcha. Gotcha. Okay. Um, yeah, you, yeah, you mentioned you, uh, you know, you've been in therapeutic settings, uh, that sounded like they were not necessarily misophonia related. Um, so be kind of, and this, I mean, a lot of us have kind of comorbidities with, with other things. And, uh, so, okay. Um, yeah, so I guess maybe do you want to, um, let's start, maybe start back to early days for you, for Liz. Um, When did you start noticing that you were so sensitive to sounds?

Liz [3:57]: I have tried so hard to figure that out and I have no memory.

Adeel [4:02]: We're going to need the day and the minute.

Liz [4:05]: I have no memory of not being, honestly. I know from the people that I've heard in your podcast, they can usually pinpoint moments. The one distinct memory I do have of a physical reaction is to it is, and I understand this is relatively common for people with misophonia, are different versions of misokinesia at the same time. Right. And so I cannot handle repetition in any form. So somebody saying the same thing over and over or watching the same thing over and over. And so when I was about 14 or so, I don't know if you might be familiar with a program called Spitting Image.

Adeel [4:50]: Yes. Can you remind me what that is again? Was it a British show that was kind of a satire or something?

Liz [4:58]: Exactly. Yeah. And I used to love that show. Anyway, there was this absolutely ridiculous song on that show. And I was trying to copy down the lyrics. So I had to keep rewinding and going back and rewinding. And so it was repetitive. And I noticed before I even got to the end of trying to copy the lyrics, I had to run to the washroom and vomit.

Adeel [5:21]: Wow.

Liz [5:22]: Yeah. I could not handle the repetition. And that was probably the very first physical response that I noticed to this problem. But as far as identifying sensitivity, I've always been, as far as I can remember, both in sound and in certain visuals and tactile experiences. I don't know a time that I wasn't.

Adeel [5:50]: Gotcha. It's interesting because a lot of people have developed the mesokinesia stuff later on, I think. But for you, everything, all your senses were bothersome or sensitive pretty much right from the beginning. Yeah, interesting. And you probably never, sounds like you never stepped foot in a techno club or house music.

Liz [6:16]: Actually, the only music that does it to me consistently is country music. And I had never understood why I hated that music so much until I was diagnosed. Then I'm like, oh, because there was actually a day that when I was doing my undergrad, I walked into the lab and somebody was playing a country music CD. And without even thinking this, like, I just totally reacted, walked up to the thing, ejected the CD and snapped it in half. And of course, the owner of the CD looked at me and I was like, never play country music in here when I'm here. And then I just handed her the two pieces of the CD. Wow.

Adeel [7:03]: And they're your best friends?

Liz [7:06]: Well, she wasn't upset by it. I think she was. probably more frightened um yeah but uh so she was not upset by it okay a little bit frightened obviously yeah surprised um so probably more speechless than anything else but we never it it was never brought up again after that but even i of course was stunned after i realized what my action was because it was just so instantaneous i wasn't thinking

Adeel [7:37]: very few of us act out at all. So that's interesting. Were there other situations that you have acted out? Because that was like, you know, you're in college. So you've gone through all your kind of earlier years where it's tougher for kids to kind of like verbalize or process what's happening.

Liz [7:59]: Funny enough, I don't think... i did i probably like most of us you know where we we hit a breaking point and we yell for people to shut up and be quiet and whatever but i don't recall any other moments specifically like that um i do know that i was really really hooked on this one television show um it was sherlock holmes the one that starred jeremy brett and any time that i would put that on nobody in my home in my family was allowed to come into the same room because i could not handle any other sound and i would actually chase them out so they got to know when they heard the show to just avoid the living room

Adeel [8:47]: Oh, yeah. I'm sure they got that. Wow. Okay. And I was like... What was it about the show? It was that just... It just happened to be a show that didn't have triggers and you were just kind of...

Liz [9:00]: Yeah, I think that's it. Like, everything about that show I could focus on and immerse myself in. And actually, thinking about Musophonia, one of the things that I kind of realized as my coping mechanism is music. I very much immerse myself when it comes to music. It's the sound, the lyrics, everything. And I never realized until recently that I was so deeply affected

Adeel [9:28]: buy it and now i i think that's where my brain goes to relax to get to avoid any other sounds are you a musician as well sorry are you a musician as well i wish no i'm not yeah no that's that's uh this is fair i mean uh just a lot of misophones tend to tend to have a creative bend so i'm just curious if uh if you were also a musician maybe that uh I don't know if you use that as therapy, but immersing yourself in music is a great form of therapy or a great way to cope. Okay, so what were your first triggers after the spitting image? Was there also the canonical chewing sounds around the dinner table also? Not.

Liz [10:21]: Quite so much the chewing sounds. Although I guess at times it's that smacking sound. But for me, it's what I've always referred to as organic sounds. So somebody coughing, clearing their throat, sneezing. Instantaneous rage, I want to choke them. You know, so I don't know if anyone has that degree of experience with it, but yeah, it's, it tends to be those particular sounds, coughing, anybody coughing, sneezing, sniffling, any of those sounds.

Adeel [11:02]: Yep. I understand that. Interesting. And so, and was it, so how was home life then? Were you constantly on guard or trying to avoid family members?

Liz [11:13]: I think I was really just more constantly difficult to deal with. I was a very angry person. In fact, I was thinking about this recently, you know, the high school years with the raging hormones or whatever else going on. There's the teenage angst. I don't think I was so much angsty as angry. And when I think about the misophonia, I now know why. The other thing that I really wondered about a connection was I've been a misanthrope as long as I can remember as well. I actually cannot stand humans. And I think that's also connected to the misophonia because there is not an animal sound that I've ever experienced that bothers me. or a sound in nature that bothers me. It's human creative.

Adeel [12:03]: Interesting. What about, I'm curious about if you're out with other humans in a very rural setting. I'm wondering if it's, this has come up on, I don't know, at least one or two shows recently, just the idea of just a lot of people around in kind of modern sounds and just kind of modern habits. I'm curious if maybe that's me living in one of the biggest cities in the world. I'm curious if part of it is kind of, I don't want to say overpopulation, but just kind of the intensity of a lot of people around you. If that is a big factor and if people bother you as much if you're kind of out in Ontario cottage country.

Liz [12:49]: Oh, people bother me no matter where I am. What I could say about that is one of the things that I noticed in my personality type, and I can link a lot of these things if I just sit here and think about it, but I have a very strong personality. My personality enters a room before my body does. And I'm not kidding.

Adeel [13:17]: I've been told this. I'd love to hear some examples of that. I'm sure a lot of people can relate.

Liz [13:26]: I am one who is really entertaining to other people. And I have always found that I don't like people, I don't like crowds, but I do love an audience. And I think the reason for that, if I could link it to misophonia, is that I am then in control of the environment. So I'm okay with being around crowds and that sort of thing if really I'm the one who's the source of the focus and I'm the one dictating what's going on in the environment. Otherwise, up until I had my son, I always immersed myself in music when I was out anywhere, unless I was out in nature. So I would have stuff blaring pretty loudly in my ear so I couldn't hear anything else.

Adeel [14:16]: Yeah, that's really interesting. I feel like myself and tell me if any of this relates to you, but myself and some people I've talked to kind of refer to ourselves as kind of like sometimes extroverted introverts where we just feel like I'm definitely naturally love to just kind of be on my own. And so that's been kind of the one good part of like quarantining. But I do like making jokes and comedy and having, you know, making people laugh and getting that reaction and I wonder if that's part of it where I kind of when I'm with a lot of other people it's more it's it's I feel better if it's like I'm kind of entertaining people and seeing their reactions but then I immediately want to after the event just kind of want to retreat and kind of be by myself and immerse myself in music

Liz [15:06]: Yeah, there you go. Sort of, yeah. People's laughter very rarely triggers me. I mean, there's some of those really weird laughs out there, but those are rare and they're few and far in between. And so, yeah, I think, you know, that sound is comforting for me.

Adeel [15:26]: But the control theme definitely comes up a lot. That's really interesting. And so then when you were coming up, like in school and whatnot, how was school basically being in high school and whatnot? Obviously, it sounds like you ended up in some kind of a research capacity. You probably did pretty well.

Liz [15:50]: I have a master's in molecular epidemiology.

Adeel [15:53]: There we go.

Liz [15:56]: I loved high school. In fact, I often sink into those memories and just enjoy those. I was a straight A student and I was also, I guess, considered gifted. I was in the gifted program. oftentimes I would find, like I know a lot of times they will link behaviors of really bright people to being bored, which I guess is part of the time. But again, if I link it to the misophonia and about me being in control again, I can remember certain scenarios in different classes where I would initiate something again so that I was fully in control like especially in my English literature class I would get into fights with my teacher we would have full-on arguments about Shakespeare and everybody else in the class would just sit there silently I don't know if they were dumbfounded or you know had no clue but That was how I engaged and it worked very effectively for me. But there were times like, for example, one of my calculus classes, I was telling somebody recently, I kept finishing things for the teacher or correcting what he was teaching. So he was starting to get frustrated and a little overwhelmed. And so he would send me for walks during class and just tell me to just go for a walk. And I went to a Catholic high school, relatively rigid. You were not allowed to be seen in the hallways during class time. So there were always teachers in the hallways, you know, walking around looking for any rogue students, but they never bothered with me. They'd be like, oh, you got sent for a walk, didn't you? So I was quite well known in my high school. But like I said, I enjoyed high school thoroughly.

Adeel [17:54]: Gotcha. And how about the situation with friends? Right. So do you have a lot of friends? Because, you know, you're... I guess I did.

Liz [18:08]: I mean... I could think of specific individuals who would have been like my closest friends. And, you know, of course, there's the whole clique life throughout the high school experience, but I never fit into a clique. I kind of was cross-clique. I was just socialized with everybody.

Adeel [18:26]: Yeah, yeah. so yeah yeah it's interesting i was kind of crossed as well just kind of like um you know the gifteds down to the um well i don't want to say down but just yeah all the different groups um i was always like pseudo gifted all my friends were gifted but somehow i must have not tried on the test or something that day in grade five but uh uh anyways the interesting uh yeah okay so yeah yes you're a lot of friends you enjoyed the challenge uh i guess i mean in high school the thing i mean you're in in school you get to focus i think that's one thing that's important to us is the ability to focus and so if you probably um if you're in an environment where you can't focus that's kind of good for us in a way that doesn't distract us

Liz [19:15]: yeah um i don't know if i would say that my particular high school was conducive to an environment that allowed you to focus but like i said i tended to create my own environments right yeah you you took control of the uh the conference the discussions with your teacher exactly like um the reason i found out that i ended up in the gifted program in high school was It happens through teacher referrals, so there's no testing or anything like that. The teachers just observe things about you in the class and next thing they're referring you for a gifted program. And I was referred by two teachers. One was my chemistry teacher because I would literally finish his sentences in class. And the other one was my computer science teacher. That was because he could never get me to sit in the chair. I was always laughing, literally rolling around on the floor. I just didn't take that class seriously. So I guess he figured I was so bright I was bored.

Adeel [20:15]: Interesting. Okay.

Liz [20:17]: But I just had a friend in there who was really funny.

Adeel [20:20]: Yeah. Okay. Interesting. Interesting. All right. And what were your, at home, like what were your parents, they're obviously noticing this. Are they noticing specifically? Yeah.

Liz [20:34]: I don't know if anybody honestly observed anything. To this day, I have never spoken to a single relative about this.

Adeel [20:42]: Ah, okay.

Liz [20:43]: Gotcha.

Adeel [20:43]: Yeah.

Liz [20:44]: So I still suffer in silence at home. Yeah. Again, you know, angry kid. So probably just chalked it up to me being an angry kid.

Adeel [20:54]: Yeah. Did you have siblings as well? Like, did they have any reference point?

Liz [20:58]: I have two older brothers.

Adeel [20:59]: Okay. Okay.

Liz [21:01]: Yeah, I can't think of any particular experience where they would have identified that I was being irrationally enraged by a sound. It's not something that I think anybody would have picked up on. I have started to wonder if perhaps my father actually has a form of it himself, but I haven't spoken to him about it. This kind of falls into the area of why I don't trust people around this, because the reason I don't typically share it with people is I don't have an appreciation for sadistic curiosity. so i mean i do on my part but not on others so for somebody to be curious about what this is because obviously if you don't have it you have no idea unless somebody's exposed you to it right so for me to explain it to somebody my concern is always are they going to want to test it out and yeah exactly and i've had somebody else who i talked to about this the one other person i met who had it and she was very familiar with that particular part of humanity where it's like they don't believe it's real so they kind of want to do all the things to trigger you

Adeel [22:27]: Or if they believe it's real, it doesn't click that it's serious.

Liz [22:31]: So they feel like, oh, it's just something I can... And so I prefer to avoid being exposed to those triggers because I do always, you know, I have actually had physical responses. Number one, I don't want to start throwing up on somebody. And... i'm never 100 certain that i will maintain and control my rage because you know i snapped that person's cd so um and the the desire to literally put my hands around somebody's throat when they cough is so strong like you know it's it's torturous to fight that all the time so i don't tell people about it so that they don't have an opportunity to test it

Adeel [23:15]: Yeah, that's the dilemma we face. I don't know anyone who doesn't have some level of exhaustion of having this stuff tested or dismissed when you try to say something. So at some point, we always... Basically, the older we get, the less likely we are sometimes to bother telling people because the odds that... something undesirable is going to happen or pretty high. And so it's like, why bother when you can just leave? So interesting. Okay. So yeah, high school was great. You got into college. Then how was college? Was that kind of similar? Obviously you have a master's, so you were rocking it.

Liz [24:02]: I went from high school to college to university and then another university. But yeah, college was a great experience. I don't really recall being triggered in any specific setting other than the usual. So if somebody came to class and had a bit of a cold or something, they were probably people who... I sat as far away from as possible, but that's also because, you know, I think it's disgusting that people want to come share their virus anyway. So to my benefit. I may have actually snapped at people at times who like sneezed and said, shut up. But it happens. But for the most part, no, there's nothing specific that I can. I did enjoy college a great deal. I got very involved in student politics and pretty much came that way through.

Adeel [25:05]: yeah okay okay um good um a good way to channel the anger that people created i was gonna say uh yeah in the you know in your debates with your english teacher and uh political debates uh i mean that's a great place to kind of maybe use your use the energy that that we have and kind of channel it to something you know at least more productive um i definitely found that out Yeah, yeah. So then getting into the real world, did things start to get really bad? As you know, there's often like a initial period of kind of a honeymoon period where we're kind of out in the world on our own and can kind of make more decisions for ourselves in terms of our environment. But then things start to get bad as we go into our work environments and whatnot. Yeah, how did that arc go for you?

Liz [26:00]: It really kind of just stayed the same. I pretty much plateaued until I had a child and then everything went bananas. But as far as work environments go, like I ended up in a few different environments that I would not have predicted I would get into, but they are in areas of research. There were a couple where I was alone, so I was in complete silence and loving it. My last job was in a political office and it was a small political office, but I had to share with two people and there might've been a few times where one of them may have sniffled or something and I would just like throw an item in the room. they wouldn't know I didn't throw it at them it was just like reaction so I was just like throw a pencil and then get up and go get it just something to kind of distract myself um there was actually this is now that I think about it I really wondered there was this one individual that I worked with in my first job when I was like 17 18 who I could not stand um now i cannot recall if he was triggering me in any sense of sound but i used to throw stuff at him like i threw a stapler at his head once i was so irritated with this individual and he had no idea

Adeel [27:30]: Wow. So what did he do? The staplers coming at him, maybe did it hit him in the head or was it?

Liz [27:34]: No, I missed him. And so he just walked over and picked it up and like, he didn't even look at me. And it's like, I don't know if he knew where it came from. Anyway. Oh yeah.

Adeel [27:44]: It just, it just happened to be the, yeah. Just a stapler flying through the room.

Liz [27:48]: Yeah. I guess it's common. I worked in a retail space, so, you know. I don't know how common you should expect that to be when you go shopping.

Adeel [27:58]: Right, right. Okay, interesting. All right, so, yeah, so, yeah, it seems like, yeah, you'd plateaued. Yeah, then what happened? You had a...

Liz [28:13]: child was it was your child like triggering you or was it just other stuff very interesting part so I gave birth to my son and three weeks later developed postpartum depression but I wasn't diagnosed until he was six months old so I pretty much suffered right up until that and that's a whole other problem all on its own It's almost like you don't exist in your own body. You're not in your own head. And so I think during that time, I didn't even have mesophonia to be honest. Like I, my brain wasn't with me. So I remember at one point when I was speaking to somebody about it, probably when he was about maybe eight months old or so, and they had said, wow, you have a baby? Like, way to go with misophonia. You're going to get treated nonstop. And I had thought so, too. And it didn't happen. And I kind of rationalized. it's a survival thing, right? Like, you know, you need to be able to hear all the sounds that a baby makes to be able to tend to them. And so they don't come across the same way.

Adeel [29:29]: They don't come across as a threat, which I think is what all other sounds seem like.

Liz [29:33]: Exactly. But I can tell you, I've said this to a few people several times, that COVID will kill me, and it will not be an actual infection. It will be the fact that I was trapped in my home 24-7 with a five-year-old with a lot of energy, and I have misophonia. And as a five-year-old does, they like to make sounds. And so as he has gotten older, I have found it harder and harder to tolerate his sounds. Fine when he was a baby and he needed my help. But for example, you know, I have two guinea pigs and I never knew this until we got guinea pigs. But guinea pigs have like seven to 11 different types of sounds that they make to communicate. It's fascinating. And I like hearing all their sounds. He tries to imitate them. I don't like that.

Adeel [30:29]: Again, you're the nature versus.

Liz [30:33]: And so the moment he starts doing like one of the sounds that's very common is called weaking. And this is a sound that guinea pigs make when they want a treat. And it sounds like, right?

Adeel [30:45]: Yeah.

Liz [30:46]: He tries to imitate that squeak and I just want to smack him in the head. So I'm usually trying to find some space in my home where he isn't audible, but I live in an apartment and that doesn't really happen.

Adeel [31:04]: I'm assuming you probably have tried ways to get him to maybe not make sounds.

Liz [31:10]: I have thought about trying to actually communicate this openly with him to get him to understand. I haven't found the language yet to talk to him about this and so unfortunately because it's that zero to 100 rage there's almost no space in between the sound and my reaction excellent point yeah you don't when you do think about it it's not the time

Adeel [31:36]: You're not in any condition to talk about it.

Liz [31:39]: I'm usually trying to, if I have any energy left in me, I will try to redirect and distract him so that he just stops doing it. But more commonly, especially since COVID, I'm just like in a permanent state of irritability. And so usually I'm just like, stop doing that. Stop it.

Adeel [32:03]: Right. So he gets that a lot. How does he react to that? Is it, I mean, he obviously knows you're not doing any kind of malice, but I'm wondering if you think about the tone. Maybe that, I mean, that's something I think about too. My kids aren't triggering. Right. We all have, whether it's our children or family growing up or friends or partners. Yeah, there is that kind of guilt and shame that we kind of carry with us. Yeah, something you've thought about it as well.

Liz [32:40]: I snap at him, then I feel horrible after because it's like he's not doing something intentionally to annoy me. Although I do believe there is an element in a five-year-old boy that is sadistic.

Adeel [32:53]: Or looking for, curious about the reaction.

Liz [32:55]: I do refer to him as my little researcher. And so that's exactly it, right? Like he sees that there's a response. He wants to see if it's consistent. He wants to see, you know, if it's him who's causing it. That part, and the thing is, I can't not have an appreciation for that being a researcher. right i was gonna say maybe you're researching him researching you and then it's a cycle in a sense uh i because there are times where oh i'm absolutely fascinated by his ability to turn anything into a game just to waste time i'm like wow there is no way anybody enjoys life as much as this kid He could make every single moment into something fun for him.

Adeel [33:45]: Yeah, yeah, yeah.

Liz [33:47]: You have to admire that. Right, right.

Adeel [33:51]: Right, right. Yeah, that's something, yeah.

Liz [33:56]: Sorry, I do wonder. If he has some sort of a sensory sensitivity disorder, for example, and I know I'm going to sound like a horrible parent here, but he has to vacuum his room once a week. Yeah, five-year-old vacuuming his room. But he wears soundproofing like earmuffs when he vacuums. And he is really sensitive to when the vacuum is on. Like if I have the vacuum on, like I turn it on without warning him first so he can go and cover up his ears, he freaks out.

Adeel [34:39]: Gotcha. Okay. Are there other sounds as well, like motors and... Loud, loud sounds.

Liz [34:46]: So yeah, motors definitely, definitely none of the ones. I don't see him reacting to anything that triggers me. But there's definitely some sensitivity there. And there's actually been certain body movements that make me think that perhaps he has a tactile sensitivity. Because it's almost like he's responding to being irritated by a tag in a shirt or something like that. So yeah, I do observe my kid a lot.

Adeel [35:19]: Yeah, well, no, it's part of your nature. I mean, part of our nature as misophones, we're aware of our surroundings, but also obviously you're a researcher. So, yeah, that makes sense. And what about... I guess like, um, maybe also like relationships as you know, you've, um, as you've gotten older, as they're kind of affected, um, um, that like, um, um, you know, in your personal life.

Liz [35:53]: Yes, definitely. Cause I know this happens with a lot of misophones that it's the ones you're closest to that annoy you the most. They trigger you the most. Um, yeah, in relationships, definitely. any sneezing, coughing, like it's like get out of the room. So yeah, definitely. Usually I will get out of the room because it's like, okay, you're sick.

Adeel [36:17]: Yeah. Oh, that too. Yeah.

Liz [36:19]: You're, you know, you're sick and it's making me angry. Like this is obviously irrational. But the one thing that really stands out for me, again, is that problem I have with repetition. And so, you know, with a partner, you may have those brainless moments where you're just like, say, stroking somebody's arm, right? And it's a repetitive movement. It's supposed to be intimate and affectionate, but it makes me want to vomit. And I'm like, stop, just stop touching me.

Adeel [36:48]: Yeah. Yeah. Interesting. Okay. Yeah. So it's a lot of bodily. So obviously foot shaking, leg shaking and rocking, those kinds of things.

Liz [36:58]: Very much.

Adeel [36:59]: As well as the touching. And so the repetitive touching, is it the actual tactileness as well? Or is it just the repetitive aspect of it? It's the repetitive aspect. Yeah.

Liz [37:12]: Okay. I love, I'm actually a very tactile person. I love massage. But if I went and went to a massage therapist and they focused too long on an area, same thing. Like I got to find somewhere to vomit. So.

Adeel [37:26]: Move on. Yeah. Oh, really? Okay. So, so vomit, vomit, obviously you mentioned that one time you'd vomit. Is this, do you do this common? Like it happens pretty often?

Liz [37:39]: Uh, it doesn't happen often. I get nauseated pretty quickly.

Adeel [37:42]: Nauseated. Okay. Yeah. So you, you know, you have that warning sign that something's going to happen. Yeah.

Liz [37:49]: So it's like, okay, no, you're making me sick. I have to get out of here.

Adeel [37:52]: Okay. Okay. Interesting. And that on top of the, uh, I want to, you know, kill you. Yeah.

Liz [38:02]: Okay. Between, you know, throwing up on them or smacking them. Yeah.

Adeel [38:08]: Right. Well, yeah. You want to smack them first before you throw up on them so you don't get dirty yourself.

Liz [38:13]: Yeah.

Adeel [38:14]: Also, I guess another rough thing about wearing masks in this day and age, you want to make sure you're not triggered so you're not vomiting your mask. Maybe I'll delete that visual from this episode. Let's switch gears and talk about therapy. You said you've been in therapy settings recently. Do you want to talk a little bit about that? It doesn't sound like it was about miscephonia, but maybe it was about the postpartum?

Liz [38:48]: It was 100% not about misophonia. It was definitely about the postpartum. And the interesting thing, which I would be even more fascinated in researching if it didn't have such a detrimental effect on me, was in the process of trying to establish... the appropriate medication because, you know, brain chemistry is virtually impossible, right? It's all guesswork. So in trying to figure out the right drug for me, we ended up kicking in a high anxiety. What's the word I'm looking for? Like it just killed all my inhibitions. I had no impulse control on this one particular medication and I developed a gambling addiction wow yeah and so i have been in therapy for the postpartum depression and i have also been in therapy for an addiction um and what i have discovered in those settings is that these professionals have no idea what i'm talking about when it comes to misophonia and that can be at the very least irritating annoying but more so disheartening and distressing because when you have somebody whose life goal has been around learning all about the brain and all of its intricacies And then you tell them about this and they look at you like they don't believe you because they haven't learned it in school. And somehow you're just making crap up to be unreasonable. It really, really borders on me wanting to call a college of physicians and surgeons on some of those people. But there was a particular psychiatrist in a program that I was doing online. And this is actually a program for comorbidities with addiction. So it was perfect. But just going through, and of course, thank you to COVID, everything is on Zoom. So going through this Zoom therapy meeting with these other people and having them discuss their experiences was triggering me. that by the time they got to me, I was about to throw up. And so I guess, however I communicated, I don't know at that point, but I came across like I wanted to, I don't know, I thought everybody was an irritating juvenile or something. I don't even know what I'd said. I just know that I was contacted later on by my individual therapist because, of course, the facilitator of that group contacted them and expressed that somehow I was inappropriate.

Adeel [41:46]: Really? Okay.

Liz [41:47]: Yeah. I don't even remember. When you're triggering me to that degree, there's a point where my brain will shut off because otherwise what's going to happen? So it's almost like I go numb and I don't recall actions at that point or, or anything I say.

Adeel [42:07]: I think, I think I know exactly what you're talking about. And I'm sure most listeners do. It's like, yeah, we, yeah, it feels like a brain shutdown. We just want to get out there. We just say, say whatever, just to kind of let's let me get to the, let me, let me go 10 minutes in the future or whatever it is and forget I'm even here.

Liz [42:24]: Usually if I reach that point, even though I don't recall what I say, there's a part of my brain that's definitely functioning well. I'm generally quite articulate and I can be pretty venomous. And so it's kind of a default for me if I'm triggered to that extent that what comes out of my mouth is going to be offensive. yeah yeah yeah it's the Jekyll and Hyde switch so needless to say I'm not in that therapy group anymore because it's almost impossible to benefit from any form of therapy while being triggered all the time and actually there's a misophonia support group i found on facebook uh recently and i was reading some of the this one is just for people to fend and uh one person was asking They are addicts. They were, I think, going through some program and same problem. There was somebody in there who kept snapping their gum. And this person had tried to explain it. But then, you know, you're with other addicts and their mental problems. So catch 22. No idea how this person is surviving through that particular program. They probably need to seek some other form of help.

Adeel [43:47]: And when you told your therapist, like, did the word, like, anything come out of that? Or was it just like, whatever?

Liz [43:54]: That's why I'm not at it anymore.

Adeel [43:56]: Yeah.

Liz [43:56]: Because I said it to the psychiatrist who was facilitating at the time, and he obviously had never heard of it. so he was one of those who I was getting no sympathy from. It was just like, you are misbehaving.

Adeel [44:14]: They have entire goddamn bookshelves of books about every possible condition, and this always seems to be the one that no one seems to get or even want to acknowledge.

Liz [44:24]: As far as I know, Misophonia is in the DSM.

Adeel [44:27]: It's not, actually. At least not in the American one, no.

Liz [44:33]: I'm like, of course, it's an immensely huge textbook, but if this is your specialty, this is a brain functioning thing. What are you learning? Aren't you guys supposed to keep up to date all the time in your career? Otherwise you stagnate. But whatever. The interesting thing was, I was diagnosed by a psychologist. And yet that same psychologist's colleague that I was referred to for a DBT program did not know about misophonia. And I was having to teach her about it. And it was like, but your colleague was the one. Okay.

Adeel [45:12]: Yeah, it's hit or miss. It's so hit or miss. It really is. Unfortunately, this is not an uncommon experience, just being ping ponging between therapists and 50-50 chance if they've even heard of it. And you spend your entire 50 minutes explaining it to them and pay for it.

Liz [45:30]: The fact that I learned about it in the first place and was diagnosed with it was purely incidental because I was seeing that psychologist for the postpartum depression. And just in conversation, what really stuck out for her as I was expressing different experiences, I brought up the one about spitting image and the vomiting. And she's like, sounds like you have nasophonia. And so she started exploring things with me.

Adeel [45:58]: Yeah. So that was the first time, it was pretty recent in the last five years, that you even knew it had a name. Okay. And that's when you must have been relieved. Did you go home and just kind of Google all over the place?

Liz [46:11]: no i didn't actually i was relieved that there was a name for it and that gave me the impression that i'm not the only one with it but uh i was really like even today he's five years old i i still have postpartum depression because i was diagnosed so late and so treated so late and so at that time where my brain was i wasn't into research

Adeel [46:36]: Ah, gotcha. Yeah. Okay. No, that makes sense. Um, and, uh, and then, so were you, it sounded like you then went on a medication, obviously one of them, at least one of them was not a good path. Um, did you try other medications for, for things like postpartum? And I'm curious, like, did you notice any of these having an effect on your misophonia? Whether good or bad, I'm just curious.

Liz [47:01]: I went through about three or four different medications for the postpartum and Oddly enough, of course, the first one that we started me on was the one we just sort of stuck with in the first place and stopped going around with it. But as far as the mesophonia, I can't say that I noticed. Well, no, that's not 100% true. I did discover that quetiapine had such a fogging effect on me. Like, I was just... almost incapacitated like i could have slept constantly um that yeah that definitely I was way more sensitive to sound because I was constantly irritable at having to be alert or awake. So yeah, that one definitely did it to me. But as soon as I noticed that it was doing that to me and making me so groggy, I came off it within two weeks. I was like, don't forget this. I can't. Because with the postpartum depression, it was actually making things dangerous.

Adeel [48:07]: Yeah. Gotcha. Okay. Okay. Um, and then, yeah, so, I mean, yeah, so those weren't really working. What happened, I guess your other, um, kind of coping mechanism sounds like, like music is a big one. I'm immersing yourself in that, but you can't always do that with a kid around. Um,

Liz [48:25]: In fact, that's one thing I definitely noticed after having a child was the relief that I sought and would find in music I couldn't. And I actually had more of a discomfort around immersing myself in music out of a fear of missing something. missing something right with your with my child to your child yeah exactly so it became this well i can't do that because i have to be listening all the time so i haven't up until recently i hadn't been able to enjoy music for i guess about five years right right okay so up until recently now that now he maybe he's a little bit older you can kind of get back into that a little bit

Adeel [49:13]: Yeah.

Liz [49:13]: Now I'm forcing my tastes on him, so.

Adeel [49:16]: Yeah. Well, yeah, we do that too. There's only so much, yeah, wheels on the bus that we can handle. Exactly.

Liz [49:25]: And those songs are competitive.

Adeel [49:28]: I was going to say, yeah, I was going to say like the whole baby shark and wheels on the bus and all that stuff. It's all like the whole point is repetition.

Liz [49:38]: And actually, that's another area where my son has triggered me. And it's just so strange. This is very common for kids that, you know, they see one show or one movie or one story and they for a level of comfort, they want that repeated again and again. That's kind of how they learn. and so my son has two bookcases full of books and he has become obsessed with the nat geo for kids books that he's received over the last year and there's one or two of them that he keeps pulling out every night for me to read to him and i'm like okay this is starting to make me sad

Adeel [50:21]: Gotcha. I only laugh because we have a bunch of natural books, the weird but true books.

Liz [50:26]: These are the little kids' first big book. Those things are amazing. The information is fascinating. My child runs around talking about tectonic plates and people stare at him like he's an alien. I can only hear that same thing coming out of my own mouth so many times.

Adeel [50:45]: Right, right, right, right. yeah yeah interesting okay and uh um yeah i guess um yeah we're already getting close to something we're already getting close to an hour um uh i do i guess the one i also hear about maybe um it sounds like you haven't talked to your any family member about it um What about friends? Okay, we talked a little bit about friends. I'm curious about how did you meet people with misophonia? It sounds like you met a couple.

Liz [51:18]: It's a therapy group. One of them is actually, it's a parenting therapy group of peers. And I was explaining something about a recent experience because of course with COVID and whatever, right? I'm trapped 24 seven. I mean, now he's back in school. So I'm like, yeah yeah during the summer it was killing me and um so i was i was telling them about something describing that and just as soon as i said misophonia i of course i i usually ask you know are any of you aware of this and one of them said oh i have it too and so then we kind of just started relating to each other and in another therapy group it was the same thing it was another parenting group actually and i again had asked you know i said i had misophonia to explain this experience i had and i said does anybody know what that is and one of the facilitators was like yes i i have learned about that because one of my clients had it and so i had to learn it and i'm like well congratulations thank you for learning it unlike most facilitators but So that's the only way that I've come across it. I did actually venture far enough to post from the Misophonia website. I've forgotten what the name of it is now, but the one that is the organization that has the conference and everything.

Adeel [52:49]: Yeah, Misophonia Association.

Liz [52:50]: Yes. So they have a story posted there that was written by a high school student. that describes the experience of misophonia that she had. And I found the description was really eloquent. I think it explains very well for people who don't get it. And so I posted that on my Facebook. And I don't have a huge number of friends on Facebook at all, but I have the, you know, the people that I want to communicate with. And one of them responded and I didn't say anything about it being about me. I just expressed that this is well written. I think it gives a very good idea of this particular disorder. And my friend wrote back that how difficult this sounds. And he just kind of gave me the impression that he thought maybe I had it. So. i did tell him and he was actually very empathetic um he's a friend i've had since high school and i think it explained a lot for him about you or or uh or okay so he didn't have it but he was you you reached out and he's like oh yeah i remember you yeah he was a good friend uh in high school and like i said i was angry A lot of people were actually frightened of me to some degree. So the nickname Psycho, I did hear from time to time.

Adeel [54:09]: Okay, okay. Liz the Psycho.

Liz [54:11]: yeah just because you know i was so reactive so yeah that's that's as much of an attempt as i've made to inform anybody um i guess i was kind of testing the waters there you know just put that out there and see what reactions come back and that was the only one yeah

Adeel [54:32]: yeah no that's interesting yeah but it's kind of what it's kind of uh not uncommon we're at that phase in the uh what i call the arc of wokeness around misophonia where it's like in any one group there's like uh you know there's a chance that one person will speak up about or one person will will get will reach out and hope you know hopefully um

Liz [54:52]: hopefully more will whoever is suffering in silence at least um and kind of get more um get help or at least find find our community yeah well coming across your podcast uh and the association like that was that was the big aha i can go here if yeah you know i'm really wanting to communicate about this or to hear about other people and and otherwise i just kind of keep it to myself

Adeel [55:22]: Yeah, yeah. No, that's not uncommon. Well, yeah, I guess in the last few minutes, is there anything else you kind of want to share with people who are listening about tips or just kind of a message for people who might be suffering?

Liz [55:42]: Well, I can say that for sure, DBT skills, so dialectical behavior therapy, as much as I have been in various forms of that for other reasons, learning those skills is probably one of the best ways to figure out how to cope with misophonia, especially the distress tolerance skills. Because, you know, you kind of end up, for me personally, I end up in a state of crisis very quickly because I'm trying to fight fighting somebody. I'm trying not to do it.

Adeel [56:18]: Right, right.

Liz [56:20]: The DBT skills, when I can mentally access them, are probably the most successful way to cope, I find. So if anybody is trying to find something, I would say look into dialectical behavior therapy.

Adeel [56:34]: Yeah, I'll link it in the show notes and stuff. Gotcha, gotcha. Cool. Well, yeah, Liz, again, thanks. Yeah, we covered a lot. And a lot, there's always, there's a lot of messages from parents wanting to know how they, you know, how they deal with it from, you know, themselves, but also with their children. So this is, I know this is going to help a lot of people. So I appreciate you taking the time to get into that and sharing your story. Because we don't get to hear it better enough. Yeah. Well, snapping everywhere. Every episode's about snapping. But yeah, I mean, because you're right. I mean, there's a lot of guilt. And so I think it's, at least it's reassuring to people that, you know, a lot of people are struggling with that kind of how they, what they show their kids.

Liz [57:25]: Well, I would say that any good parent walks around with a good supply of guilt for a variety of reasons. There's enough things that we're always worried we did wrong with our kids. That's what you can use to help you realize you are a good parent. This is just another one of those things. But again, DBT skills, particularly in distress tolerance, are very, very effective. Also, mindfulness. Mindfulness skills. If you can focus in on some other sound or sensation and use that to distract, it's very effective.

Adeel [58:08]: Gotcha. Okay, cool. Yeah. Well, thanks again, Liz. This has been great.

Liz [58:14]: Thank you.

Adeel [58:16]: Thank you, Liz. Always good to talk to another Canadian and so many from my home province of Toronto, of Ontario, I should say, this season. If you liked this episode, don't forget to leave a quick review or just hit the five stars or wherever you listen to this podcast. You can hit me up by email at hello at misappointingpodcast.com or go to the website, misappointingpodcast.com. Of course, it's easy to send a message on Instagram or Facebook at Disappointing Podcast. Don't forget you can support the show by visiting Patreon at patreon.com slash Disappointing Podcast. Theme music is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [59:12]: Bye.