Linda - Journey of discovery and familial connections.
Transcript
Adeel [0:02]: Hello, and welcome to the Misophonia podcast. This is episode three. My name's Adeel Ahmad, and I have Misophonia. This week, the episode is coming out on the week of American Thanksgiving, one of the more challenging times for us Misophones. So we're going to go all the way across the Atlantic to talk to Linda, who lives in the Netherlands. We talk about her challenges with her particular work, her family, and relationships, all the venues where we know Misophonia rears its head. I just want to mention I recorded my chat with Linda a few weeks ago, but a couple nights ago I thought of it again when I was at a concert by the band Wilco, in particular when they were performing their song Reservations. And I think I'll link to it in the show notes if you want to listen to it after the show. Anyways, here now is my conversation with Linda. You're one of the first people that I'm interviewing for this podcast. So I guess to start, why don't you tell me a little bit about you, where you are located and maybe what you do.
Linda [1:06]: Well, thanks for having me. My name is Linda and I'm from the Netherlands. I am 23 and my... What I currently do day to day is I'm working on my master's dissertation. It's quite interesting because I'm doing it about conversation analysis, which means that I work a lot with recordings that I have to listen to.
Adeel [1:30]: Interesting. So are you kind of in the linguistics department, I guess?
Linda [1:34]: Yes, I am. Yes.
Adeel [1:35]: Gotcha. Gotcha. So you're listening to a lot of conversations. And yes, as we all know, people have... Yeah, different mannerisms. They may be eating at the time, hopefully not. But I guess is that a pinpoint?
Linda [1:53]: I think it is. I find it very fascinating that I chose this path in life. And sometimes there are definitely sounds in recordings that I identify and I know, oh, I don't like that part, but I know I've got to transcribe it.
Adeel [2:13]: Are you doing the interviewing or are you just getting the conversations pre-recorded?
Linda [2:19]: I'm getting some pre-recorded stuff. I'm working along with a PhD student and she has gathered all the data for me, but I do a lot of the transcribing.
Adeel [2:29]: Gotcha. Okay. And is the transcribing part of the project or would it be possible to, because I'm actually going to be using Google to transcribe these podcasts. I'm just curious if you can like automate that and then you don't have to hear anything or if that's part of the project, perhaps.
Linda [2:49]: No, unfortunately you have to do it all by hand.
Adeel [2:51]: Gotcha.
Linda [2:52]: It's also, it focuses not just on the words that are being said, but also inflection and
Adeel [2:59]: on pauses of course things that could be of importance to the conversation right so completely defeat the purpose if you automated it oh yeah a little bit gotcha okay um so so um yeah going back to misophonia in general like how how long have you how long do you think you've or do you know you that you've had this i've always been weird with
Linda [3:25]: sounds in the way that I noticed I really liked reading a lot because I to the point where my parents thought I had a hearing problem because when I was reading I would just be in a world where I wouldn't hear anything and you could just talk to me and I wouldn't even hear it and then later on I realized that sort of dissipated away and that I was much more aware of the sounds in me. And around the time that I was 12 or 13, for the first time, I really noticed that certain sounds disgusted me, had like a very like visceral emotion that it like evoked anger.
Adeel [4:13]: Gotcha. So early on, like in grade school, pre, you know, pre-adolescent, I guess, you were completely zoned out when you would be, you could focus entirely while you were reading. And at some point in middle school, or I don't know what they call it in Europe, but you just got a lot more sensitive to sounds.
Linda [4:35]: Yeah.
Adeel [4:36]: Gotcha. Yeah, that parallels with a lot of experiences in terms of the age, the timeline. But I'd never heard anyone describe it like I was, you know, I was able to 100% focus and then something changed.
Linda [4:49]: yeah multiple teachers my parents they they kept on sending me to a um we call it gano doctor which is like for your um your ears and your eyes because it's like connected or whatever yeah we have like neurological um because they were like there's there's something wrong with this kid her hearing is off there's something wrong and every time i got there and they performed like all sorts of tests they were like this girl's perfectly fine there's nothing wrong with her
Adeel [5:20]: And what were they doing? Were they just doing basic hearing tests, I guess? Or were they doing MRI scans or fMRI scans or anything?
Linda [5:29]: I don't think I've ever, no, I don't think pictures or whatever have ever been taken of me.
Adeel [5:35]: And interesting. So how long was it from when you noticed that they took you to the doctor? I'm curious. They're like, oh my God, they start panicking immediately? Or was it like gradual?
Linda [5:52]: I don't know, to be honest. It's kind of difficult to answer that question anyway. I can't remember that.
Adeel [5:56]: Some of these questions are probably just going to be impossible answers, so you feel free to skip them. Do you remember what some of your reactions were? Were they just cringing or were you acting out?
Linda [6:11]: I think it was mostly cringing.
Adeel [6:12]: Yeah.
Linda [6:13]: And I think it had a lot to do with, now I talk about it more and more with my sister because we're both fairly certain that we do suffer from misophonia.
Adeel [6:24]: Both of you?
Linda [6:25]: Yeah. Okay. And I think a lot of my earliest memories of misophonia, well, even, oh, it's a realization going back to it. Even like my mother used to, really freak out when we would like drop something and we we wouldn't understand why that would happen like she would have like a sort of anger or like that type of reaction to us dropping a glass you know yeah it's not just because something breaks probably for me at least it's like breaking that breaking my concentration even though i don't realize i'm concentrating yeah maybe just speculating but yeah but yeah that and like it was connected to them my sister sometimes making a comment like oh that eating is disgusting. And suddenly I was like, yeah, that eating is disgusting. But before that, I didn't even realize it.
Adeel [7:14]: And was it affecting your grades at all? Was that one symptom, I guess, thing that happened when you started to notice these sounds and your concentration was being broken while you were reading?
Linda [7:28]: I don't know if it affected my grades as much because I think generally in life, I I don't mean to sound like bragging, but I think I always got quite good grades. But I did notice towards when I was in high school and the later years of high school that I found studying itself to be much harder.
Adeel [7:51]: And do you remember like doing exams or anything? I don't know how they do exams over there, but you know, it's, it can be held to be in a giant, they'll hold exams here in the U S and like a giant auditorium or gym. And it's just, it's just a disaster. It's like a war zone, keeping your concentration.
Linda [8:12]: We were always allowed and sometimes even advised to bring them, like those yellow earbuds that you could plug in your ear.
Adeel [8:20]: Oh, very good. Okay. Well, that's quite progressive.
Linda [8:25]: Yeah, but I do remember that from like a certain age if I didn't have them and I would look in my bag and I would see I didn't bring them. And there was just this moment of panic. It's like, oh. what if somebody has the cold in front of me and I would like to try and like, and see who will I sit behind and generally like towards the back or towards the front so that at least like only get like half the sounds really close to you.
Adeel [8:53]: Yep. Yep. Yep. Oh yeah. Yeah. For calculations like that, we all have to perform that. Yeah. I try to, um, and I don't always do this, but yeah, I try to have different form factors of, uh, you know, earphones are Bluetooth and then wired as well. There's a backup and then, yeah, the noise blockers and yeah, interesting. Okay. And so, okay. So you, you got, you got out of school, you know, top of the class or close to it. Did you, and that must've not, if you're 23, that must've been relatively recent. I mean, I found out about Misophonia about 10 years ago. How did you, how did you, when did you realize it had a name?
Linda [9:35]: I think it was when we saw an article published that they opened the first misophonia clinic in Amsterdam.
Adeel [9:45]: Ah, okay.
Linda [9:46]: Because me being in the Netherlands, that was sort of a big thing. Like, oh, do you even know what misophonia is? Do you hate chewing sounds? There might actually be something that causes that. And I read that and I was like, Yes, me entirely. I recognize everything.
Adeel [10:04]: Yeah. Oh, it's, it's, yeah. It's amazing how immediate, uh, we can, we can write into that. We don't even need anything beyond the headline sometimes. Um, and, and so there's a, so there's a clinic in Amsterdam. So is it, was it related to a, uh, a university or is it an audiologist?
Linda [10:21]: Um, I'm not entirely certain. I have looked, um, at there cause it was quite interesting. Of course, when I realized that it's kind of bad.
Adeel [10:31]: Do you know the name of it by any chance? I'll maybe look it up later and put it in the show notes, and I'd be curious to read about it.
Linda [10:38]: I don't want to put 100% of my voice behind this, but I do think it's connected to the University of Amsterdam, the U of A app.
Adeel [10:47]: Yeah, I can Google it. And so you have not visited it or made any contact with them yourself?
Linda [10:56]: No, I've seen their waiting list. I've done a couple of their testing things, but I believe that quite early on the waiting list were already like three years or something similar.
Adeel [11:09]: Oh, really? Okay, wow. So they have some, obviously they have some, there's some awareness about them and people are signing up for... be part of their studies or whatever they're working on interesting yeah i'm definitely gonna have to look at this and okay so so you okay so great so you you read an article put up by this this institute a few years ago i'm thinking yeah okay great um and so how so now so how did that change anything obviously you know you recognize immediately um how like how do you You've told me that listening to recordings obviously is tough. How do you cope with that in particular, I guess? Because obviously it's critical to what you're working on.
Linda [11:55]: With that in particular, I generally, I've got a couple of notes. I've got a big list of notes anyways, always when I'm transcribing where say things that are relevant to the study I'm working on at the time. But if there's something that's quite loud or... noises that I generally dislike, I will just sort of put a ball warning up for myself. Like in this bit, just tone it down. Just get what you need.
Adeel [12:21]: Just power through. Yeah. And maybe even take a break.
Linda [12:26]: Yeah. Sometimes that really helps as well.
Adeel [12:27]: Do you have to re-listen to stuff multiple times or is it just once and you're done? Okay. So then that's, that's why you take your notes and you're like, okay, let me get ready for the big disgusting cough or whatever. So I, yeah, well, I didn't want to, I didn't want to put any triggers in the podcast, but it's inevitably going to happen at some point.
Linda [12:47]: But generally one of the things that I think, it was it was a complete stranger and it was um we were doing some class recordings and i could almost kiss that teacher because there were there was this one student that was she was like clicking her pen constantly and in the middle of the recording he says uh oh hey well whatever her name is i won't say here but like are you there could you maybe please stop that clicking noise with your pen? Because it's quite annoying for the people that have to listen to this. And I was like, oh, this man.
Adeel [13:22]: Yes, a hero. Yes, there are heroes everywhere. They might not have misophonia, but we appreciate their service. And so obviously, so you handle your work that way. So outside of that, so you're still kind of an academic environment. Are there... problems day to day at, you know, at school when you're doing your research? Other than listening to those things, or are people generally good around your kind of near environment is actually relatively quiet?
Linda [13:59]: I would say that now I'm doing my dissertation, it's quite good because most of the work you can do by yourself.
Adeel [14:06]: Yeah, yeah, yeah.
Linda [14:08]: I think one of the biggest challenges that I faced during my time at university was that you've got these obligatory seminars and lectures and most of the time they're fine. Most of the time I'm fine. But during flu season, it can be... Yep.
Adeel [14:33]: Yeah. Yeah. yeah say no more we yeah and i know where you're going there uh yeah when the seasons change it's uh yeah it's um our our your armor needs to go a little extra um and so well that's great so um is this kind of maybe going to also affect what you want to do in the future in terms of um for example i work from home software engineers so i'm i love to work from home um i've worked in you know open office environments before as well and i like working with other people but those are kind of hell too so um i've kind of like moved my um moved in a direction where i can now work work from home and that that's great i'm just wondering if you're kind of thinking ahead to as you wrap up your um you know when you wrap up your studies what you want to do um i have
Linda [15:28]: and also the job I currently do because on the side I am a content writer for a company that does sort of sustainable projects and before I've also done an internship where I was also in an office environment and I've always been lucky enough that earphones were permitted so I if as long as that's a possibility I tend to bring earphones back up here
Adeel [15:56]: Yeah, and that's great. In my kind of environment, a lot of companies give them away because even if programmers like to just listen to stuff anyway, so that's great if that works. And for me, it definitely does. I don't think it does for a lot of people. I would maybe hate to be a doctor or a nurse, but...
Linda [16:18]: I feel blessed. Yeah.
Adeel [16:20]: Yeah. So you, and you mentioned earlier that your sister also has, um, or might also have misophonia and that's somebody that you talk to. Yeah. I'm curious. Are there, yeah. How are people around you in general? Um, that, uh, you know, have you talked to a lot of people? Are people generally accommodating or, or are there people you would never tell because you, you know, that they would react badly. Just curious about the supportiveness around you basically.
Linda [16:48]: That's an interesting question.
Adeel [16:53]: Because it's obviously, it's, you know, it's definitely torn a lot of relationships apart from what you're like, you know, parental, you know, more intimate siblings. Actually, you're not the only person who I've heard that has siblings that also have it. So, yeah, it can kind of be across the board. So I'm kind of curious, yeah, your kind of like personal environment.
Linda [17:20]: also I'm always still figuring out maybe that's a topic for later as well if it's like a neurological issue but I also do believe there's a lot of environmental aspects to it and whenever I can talk about it with people it's generally much better like I've got a partner a long time, over five years now, I think. And I've definitely set him down with the talk of like, hey, I really recognize myself in this disorder. I've never officially been diagnosed. But if in the past you've noticed me reacting to some things that you've done in a certain way, this is it. And these are the things that we can maybe do together to make this work.
Adeel [18:16]: So you had that talk like that, like in those terms and everything. That's very excellent. No, that's excellent. I'm sure a lot of people would love to hear how you, how you approach that. It's a very mature way of doing it rather than just screaming at the person for years. And then eventually.
Linda [18:31]: I actually sat him down and showed him some of the subreddit stuff from the Misophonia subreddit. And to sort of like, especially the ones that do talk about how it affects their relationships and like, Honestly, I'm not mad at you. It's just the sounds that come out of whatever you do. I won't mention all the specifics, but sometimes it's the sounds that happen that anger me so much. And it's honestly that you've been at that point. It's my guttural reaction to aim it at you.
Adeel [19:04]: Yeah, that was actually one of the, this came up in one of the sessions last week was like trying not to approach it as like that sound is causing a problem. It's more like my condition is just very sensitive to that sound.
Linda [19:18]: And that's honestly true. Cause it's, it's not like it's, it's, it's like, and whenever I do see like, I guess memes or like pictures or whatever, that say, Ooh, you chew this way or whatever, like, Oh, you should all, go away or, you know, like more angry times than that. It's like, no, it's honestly not, this is completely me. And I know that this is my issue. Um, but it doesn't make it easy.
Adeel [19:49]: Right. Right. Yeah. Yeah. Yeah. Part of it is it's, it's hard to not make, I guess it's hard to not make sounds. Um, um, and what was the reaction?
Linda [20:03]: You're crazy. Get out of here. I honestly think he knew. He knew there was something. Yeah, I think there was a relief for him as well.
Adeel [20:15]: Did it get worse over time? Did that prompt you to sit down or was it like you were just getting tired of the same thing? A lot of people pick up triggers. I'm just curious if yours had gotten worse or anything.
Linda [20:32]: I honestly don't know because I feel like it goes in waves. It comes and goes in waves how bad things are. And I don't think it was a particularly bad wave at that moment. It might have been that I just read something about it and was like, oh, never actually mentioned that the way I react actually has a whole group of people that feel the same way that I do.
Adeel [20:54]: Well, maybe it was better that you weren't in the trough when you brought her up. It could have been worse. Interesting. Have you noticed those waves? I know for a lot of people, stress has a lot to do with it. So if it's a stressful time at school or work or something, that can really make people more sensitive. Or has it just kind of been kind of random?
Linda [21:22]: Completely stress.
Adeel [21:24]: Completely stress, yeah. Makes total sense, yeah. Gotcha. Okay, okay. And have you met, so yeah, so tell me maybe, I guess a little bit about your sister. Has she been kind of, do you guys talk about, and are you kind of in lockstep in how you are approaching it, or is she having a much worse time or better time?
Linda [21:47]: Sorry, what's in lockstep?
Adeel [21:48]: Oh, a lockstep in terms of like your experiences you share with her and your coping mechanisms and everything, and you're kind of like kind of on the same page in your misophonia, like in terms of the triggers and the level of reaction, or is she handling it differently?
Linda [22:07]: That's an interesting question.
Adeel [22:09]: I mean, we can have her on at a later podcast.
Linda [22:11]: Yeah. No, it's yeah. Like I do think also that we've got like different triggers. I don't think they're all completely the same. Yeah. I do think that she's maybe struggling worse with it.
Adeel [22:29]: And are your, so were your triggers, did she, was she also around 12 or whatever when she first started exhibiting symptoms or were you, was it around the same calendar time, like around the same year, maybe?
Linda [22:43]: I think she was probably exhibiting symptoms before me because I definitely noticed that she was verbalizing. Yeah, she's older.
Adeel [22:51]: Gotcha, okay.
Linda [22:52]: Yeah, she's three years older.
Adeel [22:54]: Gotcha. And I know for when some of us were meeting last week, and I've read this before, but a lot of people can point, a lot of people say that their first trigger was definitely their dad. I mean, it could be their parents in general, but it's almost always parents. And then if it's any one of the parents, it's almost always the dad. So I'm just curious if you had maybe a similar.
Linda [23:16]: Yeah, it was my mother.
Adeel [23:20]: Yeah. Okay. Yeah. A parent at least.
Linda [23:23]: So, yeah. Yeah, it was a parent.
Adeel [23:26]: Interesting.
Linda [23:26]: Yeah. Yeah. I wonder if that's a teenage thing that like you find things to like distance yourself from your parents and that a weird way to manifest that or whatever. I don't know.
Adeel [23:38]: Yeah. No, I know. I mean, the research is saying neurological, but I'm also, I'm like you, I'm like, I'm still not, I'm not, I'm not convinced either way, or maybe it's a combination of something, something in the brain gets kind of like, obviously the brain's growing around that time. Something changes based on the environment. But yeah, nature versus nurture, it's unclear. Or it just sounds like at a minimum there's a relationship. But this is a very common thing that your parents are your first trigger around the ages of 11 to 14 or whatever. So that's interesting you guys are noticing the same thing.
Linda [24:14]: Yeah.
Adeel [24:15]: And so are you seeing, so other than like self-diagnosing and, you know, obviously being very mature about how you relate to other people, are you like, and you don't have to get into like medical stuff, are you seeing any therapists or audiologists about the condition and maybe going by some of their advice?
Linda [24:39]: Not specifically seeing a therapist about that, but my sister is. sort of semi-related to that, but also to some other things. She is seeking a therapist and we've been in, cause I'm very close to her and she is also, she only lives about, I guess, a mile away from my house. So we hang out a lot. And a lot of the times I do go to therapy with her. And these have sort of been things that have been brought up, but never, it's not like a specialized thing. So it's not that they don't know a lot about it.
Adeel [25:17]: Right, right, right. Okay. Yeah. Well, thank you, Linda. I know a lot of people are used to bottling this up and have been doing that for years and in some cases decades I've met. So they'll benefit from hearing your experiences. But otherwise, good luck to you and thanks again for being on the podcast.
Linda [25:38]: Thanks for having me.
Adeel [25:40]: Hope you enjoyed that conversation. I've spoken to more and more people from around the world since then, and I'll be releasing those conversations in the coming weeks and months. It's amazing how consistent and global all of our experiences are. Speaking of that, I've been sending stickers of the podcast logo all over the world, as many people have been hitting me up via email, Twitter, and Instagram. They're free and I'm happy to send some to you too. Just email hello at misophoniapodcast.com or find us on Twitter at Misophonia Show or Instagram at Misophonia Podcast. If you want to support the show, I've launched a shop that I'll talk about a bit more next week, but you can check it out now at shop.missiforniapodcast.com. Keep an eye on social media for pics too. Also, you can help more people find out about the podcast just by leaving a review wherever you listen to them. Well, that's it for now. Theme music is by Moby. And until next week, especially for those celebrating Thanksgiving this week, wishing you peace and quiet.