Malya - High School Student's Proactive Misophonia Management
Transcript
Adeel [0:00]: Welcome to the Misophonia podcast. You're listening to episode 16 in season two. My name is Adeel Ahmad and I have Misophonia. This week I'm talking to Malia, a high school student in Utah. A lot of students and parents of students write in wondering about how to survive at school with miso. Today, we hear from someone who's a strong advocate for herself at school and has great support from her family. You'll also hear about her tools and techniques, plus how she explains it to friends and to her family. She also talks about some treatments that we haven't covered yet on the podcast, specifically neurofeedback and EMDR, eye movement desensitization reprocessing. And I'll have some links in the show notes. We're getting closer to this year's Misophonia Association Convention, this year online only, October 8th through the 10th. I'll be speaking, along with many other more interesting speakers, on the latest Misophonia news that's on research and community. Links in the show notes on how to get access, or you can just Google for the Misophonia Association Convention. I want to do a shout-out for Misalist again this week, Solitude Jude Ceramics. Fellow Misophone Jude Mortensen makes ceramics and other art, along with teaching classes in San Marcos, California. Custom orders and great gifts are available at her shop online at solitudejude.com, or you can follow her on Instagram at solitudejude. All right, now here's my conversation with Malia. Malia, welcome to the podcast. Good to have you here.
Malya [1:54]: Thanks for having me.
Adeel [1:55]: Okay, so we had a little technical difficulty there, but we're back. Yeah, let me ask you, I don't know much about you, so where are you located?
Malya [2:05]: I'm in Utah, actually, and just kind of around that Ogden area.
Adeel [2:12]: Gotcha. Okay, so that's, yeah, not in Salt Lake City, but a little bit outside. Cool. Cool. And, yeah, so, yeah, tell me a little bit about you, I guess.
Malya [2:25]: So I am in high school. I'm going into my senior year this year. And...
Adeel [2:32]: Gotcha. And so you're probably finding, yeah, a lot of those school triggers that... Yeah, definitely. I've talked to a bunch of people where there's definitely more awareness happily. Well, not happily, but I'm glad to see there's more awareness around, you know, for students as they're coming up. Yeah. How are you finding high school life?
Malya [2:55]: You know, it's difficult a lot of the time just kind of being in class. You hear a lot of triggers that you can't control. Just people around you, you know, doing whatever. But I've kind of found a way to advocate for myself this coming year. I've talked to my school counselors and they have... kind of uh you know found that there's a something called a 504 accommodation where you get all your teachers in in a room together and i believe the administration as well and your parents and your school counselor and kind of give them your spiel on on what misophonia is and i think that i'll you know maybe give them some articles to read and kind of talk to them about my experience and and then we can you know have those accommodations for you know if i need to step out of class or if I have to wear earplugs or earbuds during a lecture, they can know that I am a very dedicated student and that I will work hard to figure that thing out or I'm not just trying to get out of class or not listen, stuff like that.
Adeel [4:03]: Yeah, it's interesting. I've heard of 504, but not maybe kind of unfamiliar with the process. So you approached your counselor first and you're able to kind of like pull together a meeting with everyone at school?
Malya [4:17]: Yeah, I believe that's pretty much what's going to happen, yeah.
Adeel [4:21]: And you didn't need, did you need like an outside note or something from a doctor or was it something you were able to kind of initiate yourself?
Malya [4:30]: You know, as far as I know, you just kind of, I haven't had a note from a doctor or anything, but as far as I know, you can kind of like initiate that yourself. I believe it would probably help. And I think that maybe some things would require that, but I think it just really depends on the situation in the school and, you know, stuff like that.
Adeel [4:49]: Yeah, that's awesome. Yeah, I mean, trying to get more, trying to encourage schools and administrations to kind of take this more seriously. So it's great to hear an example of your school.
Malya [4:59]: And I really think, yeah, I really think a lot of people, you know, kind of are worried about accommodations and looking weird or being different. But I think it's something that should be really normalized because I know that if I would have kind of taken that route a little bit sooner, I think school would have been a little bit of a better experience for me. I'm already, you know, running a lot of things at my school and kind of leadership positions of a couple of clubs and things like that. And so that requires going to a lot of school events, which, you know, you can imagine might be overwhelming, stuff like that. But I think it would have been a lot more helpful in the classroom setting to kind of take advantage of that a lot sooner.
Adeel [5:41]: Yeah, I mean, it sounds like you're a good student, but it's saddening to think about all the students who maybe that's really affecting their grades with some simple accommodations. Things could be a lot better and really live up to our potential because misophones are super smart people, as we all know. Yeah, that's great that you're kind of blazing this and kind of this trail. Are you finding, have you found maybe other students too at your school or is this kind of an emerging thing that you're advocating?
Malya [6:15]: I actually have not. You know how some people say, you know, you tell them about it and they're like, oh, well, I hate the sound of chewing too or something like that. But, you know, they don't, it's not the same thing. Yeah, yeah, right. I'm actually, the Hope Squad is an organization that is at lots of schools now that's kind of... for suicide prevention and helping mental health issues in schools. And I'm in a leadership position at my school and one of our student advisors this coming year. And I'm actually also on the Hope Squad's National Council this coming year.
Adeel [6:56]: Wow. Okay. Yeah. Tell me more about Hope Squad. I hadn't heard about that.
Malya [7:00]: It's a really, really cool program where students can kind of have training to to learn how to help other students. We're really just kind of the reference point for the eyes and ears of the school to see people, you know, see students that are in a dark place and then maybe refer them to a counselor or a teacher or something like that. And I'm really working this year trying to make those pushes to normalize mental health in schools because I think that the first step of, you know, anybody feeling like they can talk about what they're going through is feeling like what they're, what they're feeling is normal so we're doing um a couple of we're having a couple students like spotlight talk about their their anxiety their depression and you know maybe on a anonymous kind of blog type format that's what we're trying to get in works for this next year and i think that i'm going to try to find some students with maybe mental health issues that people might not know about or things that they struggle with that people might not know about so we can kind of normalize that for everyone and I'm going to talk about misophonia and how that's affected me and maybe some people will realize that that's something that affects them as well.
Adeel [8:15]: Yeah, it's huge. I mean, yeah, just trying to normalize whatever people are feeling is absolutely huge. I'll put a link to Hope Squad in the show notes. Yeah, I'm glad you're doing that. And yeah, I'd like to hear how that goes when you talk about Missifonia in particular.
Malya [8:30]: Yeah, we'll see if that gets to be put in the works. We'll get some more news on that soon, so I'll totally let you know.
Adeel [8:39]: yeah so um i guess you know you're um you know you're you're telling your school about it uh have they have they done anything for you like i guess when did you when did you start bringing it up at school um this this last year just this last year yeah is that when you found out about it in misophonia
Malya [9:00]: I found out about Musophonia probably two years ago or so. My mother brought it up to me as something, because it's been pretty well known around my household that that's something I deal with, like eating in a different room, things like that. But my mom, a couple of years ago, was like, oh, I think this might be something we have. And I'm like, well, why didn't you tell me about this before? But, you know. But, you know, in school kind of this year, even just in like through the half of the year, like near the end is when I kind of started bringing it up to teachers is something that I deal with. And, you know, you obviously get the backlash from teachers when you're just kind of casually talking to them about it instead of like in a 504 accommodation where, you know, I've gone up to teachers and they've gone. well, I can't give you more time on your assignments. That's not what I'm asking for. I need to know that I can leave if I'm about to have a panic attack or things like that.
Adeel [10:02]: Okay, so your mom is the one who introduced you to it. How did that feel? Obviously, you probably had it for a while. Was that a huge relief?
Malya [10:15]: Oh, definitely. I definitely felt a lot less crazy once I knew that other people dealt with it as well. I actually struggle with anxiety too. I have kind of generalized anxiety disorder. And so that was another big one. I think those kind of go along together a lot of the time. And I noticed that when I'm more anxious, my triggers are way more like... I don't know, like strong.
Adeel [10:45]: Yeah, stress is definitely a huge factor for a lot of people. And so were you diagnosed with GAD before you found out about this? Yeah. Okay. And did you, I was wondering like if people kind of like don't, maybe don't bring it up or miso doesn't get.
Malya [11:04]: diagnosed quote-unquote because people maybe think it's part of something else that they have did you did you maybe assume growing up that this is all part of gad or you know i actually wasn't i wasn't diagnosed with a generalization until pretty i don't know pretty recently like a couple of years ago um just like formally diagnosed with that i struggle with anxiety now like growing up a lot. It was very, very difficult. But I kind of assumed that it was just like, you know, my anxiety the whole time. With the misophonia, I thought maybe like, you know, oh my gosh, I'm just anxious. That's why I'm mad when people are eating or something like that. But it's a different thing.
Adeel [11:50]: I mean, people should understand. It's like, you know, the fight or flight can come up when you're... I mean, it's better when you're relaxed, but it can come at any time.
Malya [12:01]: And I've noticed that as I've gotten older, it's been... know less just when i'm stressed that i have those kind of butterfly and the triggers come up and and you know more all the time right yeah absolutely um and yeah do you remember but going back like when um when when did you start noticing it Yeah, I was thinking I was probably about eight or nine when it just kind of, when I noticed maybe that that wasn't something that other people, you know, it kind of emerged and maybe you've noticed that other people were, you know, feeling that same way. You know, kind of eating at the dinner table and family around me going, what's going on? Like, why is this happening? and me not knowing why I'm like so frustrated.
Adeel [12:48]: Was it ever in a, did they ever react in a kind of, you know, you know, negative, negative way, like making fun of it or, or was it really just kind of wonder?
Malya [12:59]: You know, I don't believe I ever really experienced people making fun of it. My, my, uh, I think people were kind of upset sometimes or frustrated because like they didn't understand, uh, especially like when I was little, cause I was, I mean, not super little, but like eight or nine kind of in that age range. Um, like when it just kind of first started because they just didn't understand at all. And like, you know, it's, I can see where it'd be really frustrating to, to kind of like have somebody crying at the dinner table and like, don't know how to fix it. Like just, just knock it off or like, don't, don't look at it or like that. But as I've gotten older and I've kind of started to, you know, find more resources to help people understand, it's gotten a little bit better, you know, with that just kind of understanding in my family, in my house.
Adeel [13:54]: Did those kind of dinner, those kind of eating experiences kind of predate the anxiety, the other anxiety that you're feeling? Or was it all kind of together around that young age?
Malya [14:08]: You know, I remember having anxiety a lot, like really a lot before I kind of ever had misophonia kind of symptoms. But, you know, I really haven't paired the two together until maybe a couple of years ago, kind of when I reached kind of that adolescency age, when the stress impacted a lot more and stuff like that.
Adeel [14:33]: Gotcha. And, um, yeah. And so, so how do you, uh, so how have you been, you know, how did you deal with it before you had me? So did you just kind of like, uh, um, you know, just leave the room or, um, did you start to develop the, yeah, before you found out how to name and all that stuff? Yeah.
Malya [14:51]: Yeah. Um, I, I would kind of try to pinpoint my dinner table seating, try to figure out where I'm going to be farthest away from people who eat the most loudly or things like that. And I kind of would start maybe finding excuses to leave dinner early and putting music on during dinner and then kind of like... But then as soon as I kind of figured out that it had a name and things like that, I have a lot of really good things to help deal with. I don't know if I already said this in this take, but hunting earphones.
Adeel [15:37]: Yeah, tell me about these tools. We haven't gone through some of your tools of choice.
Malya [15:43]: Oh, yeah. I actually have these hunting earphones that I have from Walmart that are just kind of rubber and they have a little... They're very small. They're not very noticeable. But I just carry around on my little keychain with my keys on it and stuff like that.
Adeel [16:00]: These are just earplugs, right? They just kind of block.
Malya [16:03]: Yeah. But they help a lot when I'm in school and listening to lectures because I can still very clearly hear people talking, but those kind of softer trigger noises are blocked out more and muffled.
Adeel [16:22]: Yeah, a lot of the classic triggers tend to have a lot of high-frequency components, and that's why these... which are easier to block out with earplugs. That's a great idea to stick them on your keychain. And yeah, so what else have you got going in your toolkit?
Malya [16:45]: You know... I've got, you know, I've got earbuds that I carry around with me all the time, just kind of wear them in, you know, school hallways or sometimes in class when I am having an extra hard time. And just, you know, music is really helpful. I have a whiteness machine that sits in your room as well. Cause my, you know, my room is right off of the kitchen. So you get a lot of those like clinging dish noisers and shutting cupboards and things like that. And so it's proved to be pretty helpful. Like I, I kind of just have it on all the time in here.
Adeel [17:16]: So you have it on all the time, just kind of like as a baseline background noise?
Malya [17:22]: Yeah.
Adeel [17:22]: I'm curious how people decide to use white noise machines versus just sticking in earbuds. I can see maybe it can be tiring just to have stuff in your ear all the time. That's maybe where a white noise generator would be good in the background.
Malya [17:37]: Yeah, it started, I... I had a hard time like sleeping with, and just like kind of quiet. Cause you're, you always kind of have like little, little noises everywhere. And so I started sleeping like with a fan in my room, but then, you know, I think it got to be winter time and it was too cold. And so like I ordered a white noise machine off of Amazon. This is like probably when I was 10 or 11 or so. Um, but I started like sleeping with the white noise and then, you know, as it's kind of gotten worse as I've gotten older, it's been, Nicer to just kind of have something baseline all the time, you know, maybe something for my brain to kind of focus on rather than Hearing all the noises like outside of your actually making a transition to soon. To help my kind of noise sensitivity issues to me being in the basement of our house instead of next to the kitchen, which I'm curious as to how well that will help, but I'm pretty sure it'll be helpful.
Adeel [18:41]: Yeah, right, yeah. I guess, yeah, I would just be worried about footsteps, but I hope I didn't add that to your trigger list.
Malya [18:50]: I think, you know, I've spent a little bit of time down there and trying to figure out if it'll be better or worse, and I think that, you know, there's no real good place for it, but I think commutatively, like, with all of the noise from the kitchen kind of being somewhat gone, I think it'll probably be a bit better.
Adeel [19:08]: There's not a lot of... Yeah. You can just keep modifications until you have like a concrete bunker down there and then you'll be totally isolated.
Malya [19:15]: Exactly. That's perfect.
Adeel [19:17]: Um, so yeah, so like, uh, so sound like, you know, classic, your, your earliest memories were kind of like around the table, but I'm, um, you know, if you've heard the podcast, you know, that people, um, people's number of triggers really increase. And then by the time they're adults, it's like everything. I'm curious, you know, somebody who's kind of in high school, you're probably picking up new triggers. Um, you know, how's that going? How's that process going? Are you finding new triggers every day, every week, and just having to whack-a-mole?
Malya [19:50]: You know, it has definitely expanded from just kind of those breathing, mouth-centered kind of noises when I was little to just way broader. I feel like lots more things bother me now than they used to. I don't know how often I notice new things, but I know that it's kind of taken a really big leap in the past year or so. Like really from not a lot of things bothering me to just like it's gotten really a lot bigger, the spectrum of the trigger noises.
Adeel [20:35]: Do you have any patterns to that? Like, do they, is it like, you know, maybe beginning of a new school year or, you know, somebody come, yeah, I don't know. Yeah, there might not be, there's probably no pattern, but I'm just curious, you know, it might be useful for other people to understand, like, or to see if there's any trend, like,
Malya [21:00]: you know what accompanies nutrient is it like somebody mentioning it yeah I don't know no I think I've just noticed yeah I think I've just noticed the most things around my house like if I don't know I think because obviously I have like my mesophonic symptoms are a lot worse when I am stressed out or yeah like many of us yeah Yeah, like, or, you know, if I've got something big coming up or if I'm, you know, anxious about something, it'll be a whole lot worse and send it into the place of just no longer, you know, getting out and and you know putting some earbuds in and like just full-on panic attack mode um but i think that uh i think i've just noticed the most things just around my house maybe and like um i'm not sure if there's any pattern to that at all just kind of over the past year it's just been a lot more things do you have any siblings too I do not. It's just me.
Adeel [22:06]: Okay. You and your parents. So your mom's supportive. Is your dad as well?
Malya [22:11]: Yeah, it was a little bit difficult because my mother really understood a lot of it. She kind of works in the mental health field. Oh, that's great. It was a little bit harder to explain it to my dad and kind of get him to be on the page of understanding just how difficult it is because you hear that somebody is... having these panic reactions to you know these kind of simple noises that you hear every day you kind of like try to you know i think you try to make up something for that in your mind like you know there but he has gotten a lot more support of that like he was the one kind of to mention you know moving downstairs and see if that would be helpful which is really awesome and like People checking in has been really, really helpful in my house because my grandmother lives with us as well. And so it's just, you know, four of us in here. So I've kind of made like a little bit of baseline, like if you're going to go do the dishes, can you let me know? Can you just poke your head into wherever I am and say, hey, I'm going to start doing this so that I can kind of have that space to just kind of mentally prepare. And I think that has been really, really helpful.
Adeel [23:25]: That's a great tip. I've mentioned on the show that I'm trying to tell my brain when I enter a room or start some sitting down to eat or whatever that, you know, tell my brain to look around and just be like, you know, no one's here to hurt you. It's going to be okay. This is not dangerous. Yeah. No one's trying to fight you. But yeah, just having that, just centering yourself for a second kind of does seem to make a difference.
Malya [23:55]: Also, breathing exercises help me out a lot with that. Yeah, like what?
Adeel [24:02]: Just breathing a few times? Or is there maybe a yoga kind of breathing exercise?
Malya [24:07]: Yeah, just kind of taking deep breaths and focusing, centering myself on my breath and kind of knowing that that's my center. I don't know if that makes sense. That's something that I can control in a room full of things that maybe I can't control. So, and that helps me to kind of stay a little bit calmer in those situations where it's like really a lot's going on.
Adeel [24:32]: That's a great tip. Yeah, control has come up recently too. The idea of the feeling of losing control.
Malya [24:38]: Yeah, I've actually done a couple of like little experiments with my mom, like where she'll be eating like a salad or something. And she says, okay, you can stop me at any time. You can say stop eating. And then... So we'll kind of sit there for a minute, we'll be eating, and I'll be like, stop, and then she'll stop. And then it kind of gives my brain a sense of more control, which has been super interesting, just kind of playing around with that and seeing that it doesn't bother me quite as much when I feel like I've got some control of the situation.
Adeel [25:10]: Yeah, that's a really interesting experiment, because I'll walk around with earphones, and just knowing that the earbuds are in my pocket can kind of make me feel better. I don't have to necessarily pull them out, plug them in, and all that.
Malya [25:22]: Yeah, exactly.
Adeel [25:24]: Very interesting. Okay. And how about your grandmother? Does she trigger you? Does she even know?
Malya [25:30]: Yeah, you know, I kind of have had to sit down with everybody because she just recently kind of moved in with us after all the COVID-19 stuff that's been happening. So, you know, it's been a little bit tough kind of being in the house all the time, but I've kind of talked to everybody about, you know, hey, this is what I need from you guys. Like, I can't. You know, I don't have school to go to. I don't have, you know, dance class to go to or anything like that. So, like, I'm here and I need you to help me with this. And they've been really understanding. I think that probably the biggest thing that helped me is them kind of checking in and saying, I'm going to start doing this. There's also other things like if I'm doing like a math test or something, I'll put a note on my door and say, everybody shut up for a minute. I need some, you know, if I'm already stressed out or something like that, I'll let them know, hey, I'm not doing super good. I've got a high stress level. Or, you know, I'll even just go and sit in the car in the garage and like, you know, take a break there because it's you know not loud and to do work or just kind of decompress yeah to do to do school work or yeah when i was working on that school work in our house it was a little bit difficult to like um have everybody on the same page of like okay yeah gotta not do dishes right now because i'm in here doing work but you know it was helpful to just kind of go out and place play a little bit of low music in the car because that's just very confined space and There's not a lot of noise that gets in there.
Adeel [27:15]: Yeah. So now that you're doing school from home, you're not seeing your friends. I'm curious, you seem like you're advocating a lot for yourself. Do you tell a lot of your friends? And I'm curious what the reaction is now that you're in high school.
Malya [27:33]: I've had a lot of people in my life who've been really really helpful and really like kind about it and then I have a lot of people in my life who are not so kind about it or you know try to tease or do more or something like that when they really just don't know how like horrible it is to kind of like live inside this kind of headspace where that is such a horrible like triggering noise but um Yeah, I have, you know, I have, like, my very best friend who I've known for 11 years now, and she is, like, so, so great with everything, like, so kind, so, like, hey, I want to let you know if, you know, I'm going to eat this, or maybe, like, we'll go into a different room to eat something or something like that, and is always there if I'm, like, if I'm having a hard time, like, you know, yeah. She'll kind of come and say, oh, are you okay? She's been really, really kind about it. And a couple other people in my life have been really kind. Like if I recently kind of said, hey, this is what's going on with me, and maybe don't give them a whole lot of context, they'll kind of like try to learn more about it, which has been really, really nice.
Adeel [28:54]: Gotcha. Okay. And, and so did, did they find out about it kind of the same time that your mom pointed, pointed out to you or was this?
Malya [29:03]: Yeah. Well, it's funny, my, my friend that I've had for, you know, since I was in the first grade.
Adeel [29:11]: she was kind of like oh finally like it has a name yeah so she was she kind of sensed it obviously yeah she's she's known that that's been a hard thing for me forever and so she was like oh really like that's that's so great you're not crazy yeah right that's yeah that's very good uh and uh and maybe what about some of your uh negative experiences or were they also from from other students who are just kind of you know the bullying types yeah yeah or you know like
Malya [29:41]: friends that maybe i'm not friends with anymore because of that or because of something makes it easy to decide who should be your friend and not exactly you know um but kind of people getting frustrated with me like taking car rides or whatever and they're eating something and i'm like hey can we pause until we get into a more open space where i can like actually go somewhere yeah and they'll you know get frustrated or be like why that's weird like you know just how did that make you feel was it was it just like okay i mean you know i'm kind of used to that kind of negative reaction or like did it really you know have you had really had some hurt feelings and uh Yeah, it does bother me because like, I don't know, I try to, I see a lot of things like reference Hope Squad. I see a lot of students like who struggle and I try to be really compassionate and gentle towards that. So when you kind of don't get that same treatment back, it's kind of, it's a little bit tough to deal with, but you know, it kind of just, you get used to it after a minute and just kind of.
Adeel [30:40]: Well, it reminds you why you need, we need organizations like Hope Squad. Yeah, exactly. So, I mean, you know, well, honestly, on the bright side is like you're kind of learning how to learn about both, you know, both of these types before you're an adult because, you know, you're probably in similar, well, you know, knock on wood, hopefully people will be more mature when they're an adult and if they feel like being mean will hopefully keep it to themselves. But it's good to build these skills up. Yeah, definitely. And are you thinking about colleges and whatnot and kind of where you want to go next? And maybe MISO is kind of like a factor at all?
Malya [31:30]: Yeah, I'm not sure. Career-wise, I'm really looking at going into, I'm the editor-in-chief of my school's newspaper right now.
Adeel [31:38]: Oh, you're in a powerful position to advocate for misophonia. Exactly. I think you should have a front-page column every year.
Malya [31:45]: Yeah, definitely. But I'm really interested. I love writing. I love journalism. Maybe not in the state of journalism that's in right now.
Adeel [31:53]: Right, right.
Malya [31:54]: But, you know, I love to write articles, and I think it's really important. getting news out there and getting information out there that, you know, people can choose to take or not take. That's my favorite thing to do. I also really love working with the Hope Squad. And so I think that working, you know, I think making people feel like they have a place is really important. And I think Hope Squad does that a lot, like helping to make sure that no student goes through high school feeling, I know that we can't. really do this but you know helping the fact that that maybe students go through high school feeling alone or things like that i really just love kind of working with that and i've been thinking a lot about how misogyny might affect those career choices that i have absolutely yeah and i don't really you know i'm not 100 sure about what i i have kind of a baseline of what i really love to do and what fills my cup the most but i don't really have a a clear set path right now um And I think that, you know, I've had a lot of good experiences in just kind of school settings with working with those things that might kind of prepare me for a future of what working in a job with those things might be like reference music for me. So it'll be interesting to kind of see where that takes me and how the noise sensitivity affects my career choices in the future.
Adeel [33:22]: Yeah, I mean, writing is definitely something that can be done independently.
Malya [33:26]: Exactly, yeah.
Adeel [33:28]: So that's great.
Malya [33:29]: I spent a lot of time in that class with, you know, music, listening to, you know, everybody's kind of just working independently. And then, you know, you have those times when everybody's kind of spitballing and talking about ideas and things like that. But most of the time you can kind of just do work independently.
Adeel [33:46]: All right. And so, yeah, so I guess, you know, at school, have you written about misophonia at all, actually, for your paper, or is it... I have not yet.
Malya [34:00]: I'm looking at, because, you know, reference working with the Hope Squad with normalizing those kind of mental health issues, I think that it would be really interesting to kind of find a platform to talk about that more next year. We have a lot of just kind of, you know, articles about student life and, you know, sports and things like that. And so I think it'd be really interesting to kind of get some people's take on that and write about my own experience. The closest thing that I've gotten to kind of putting that out there in schools, I made a board last year that was just kind of like a... a big piece of paper that said, like, I struggle with. And then I had all of our members of the Hope Squad write down things that they struggled with and put it on sticky notes on the board and then kind of maybe give a little bit of a, you know, you know, fact about themselves that they struggle with something. And I put it on a board so that people could, like, walk by it and see other people kind of maybe struggle with the same things that they do. And I put Misophonia on the board and I saw somebody take it and, like, I don't know, maybe they were trying to throw it away. I don't know. Maybe they were looking it up. But I don't know. I hope that was kind of helpful to some people.
Adeel [35:11]: Have you met, maybe not people at your school, but people in surrounding areas in Utah that might also have misophonia?
Malya [35:22]: You know, I have not actually met anybody. I know that sometimes you explain misophonia to people and then they go, oh, well, I'm annoyed by this. I'm annoyed by it too, but I haven't met anybody who actually has misophonia.
Adeel [35:38]: yeah yeah yeah once you do once you start describing it people you know it clicks yeah obviously as you know yeah um what about online so um uh have you have you what kind of like communities have you uh connected with online and uh oh yes i found uh i found a couple of like misophonia
Malya [35:56]: you know, Instagram pages or whatever things, people talking about it on Instagram or, or like funny, like meme accounts on Instagram that people would use when you run this, like lots of understanding. And you look through those.
Adeel [36:11]: Oh, absolutely. Yeah. It's a lot of nodding. Yeah. Yeah. There's, you know, there's a bunch of Facebook groups. There's like regional ones too that people are trying to start. And yeah. And I'm sure there's TikToks too, but I don't go on TikTok that often. Yeah.
Malya [36:28]: I'm not super sure about that either.
Adeel [36:31]: But, um, cool. And, uh, so your mom is in the mental health, um, kind of, uh, uh, profession. Did, has she, um, um, has she mentioned that, um, other professionals she knows might also know about me. So I'm just curious if, uh, she has kind of heard about it in her, uh, professional life.
Malya [36:51]: You know, I, I don't think so. Um, I don't think she's really heard about something really interesting that I have kind of like tried as a, you know, a coping mechanism or something that might help is neurofeedback, which is something that she, something that her colleagues have worked with before. And so that's kind of how it got introduced to me, which is really interesting and kind of, you know, I did some rounds of neurofeedback back last year, and I've got a little definition for you if you want to hear that.
Adeel [37:29]: Yeah, please. I haven't heard much about that.
Malya [37:33]: It was really interesting because I... the definition of neurofeedback is, uh, where subjects respond to tones and sensors are placed on the scalp to measure the brain activity. Um, and it's supposed to teach self-regulation skills. Um, you know, and it's more commonly used with anxiety, depression, things like that kind of, and it, uh, it rewards your brain waves when they fall into the more normal or like the desired brain patterns that it kind of, you know, wants to fall into. And I, um, When you start neurofeedback, they do a brain map where they kind of place sensors in your head and measure the, you know, the activity, the electricity, like the electrical activity in your brain. And what was really interesting that the neurofeedback therapist talked about was that my, the activity that could, the brain activity controlled like my ears and like right around that area was, off the charts, like way, way too active. And so, um, it was really kind of interesting to like have that on a screen and like scientifically see you like, oh, that's, I'm not crazy or something like that. But I think that I went through, I think, uh, 24, uh, rounds of their feedback and the way that they do that is, uh, you hear, you're like watching a movie or a television show or something, or this is the way that it was done. for me and then you um it would you would hear a tone and then it would kind of like the screen would dim. And so then when you like heard the new tone and your brainwaves kind of fell into the pattern that they were supposed to, the screen got less dim and like more bright so that you could actually kind of see the show a little better. So it was kind of rewarding that those brainwaves falling into the right thing. I'm not super credible source on this, but... No, it's all good.
Adeel [39:38]: No, this is...
Malya [39:40]: Yeah, that was the experience that I had with it. And I did 24 sessions of that. And it was a really interesting experience to kind of see, you know, how that might have helped. And I think that it didn't, it didn't, you know, take it away. Obviously, there's nothing that can really do that. But I think it did give me more space, like more time between the trigger and like the, the, oh, no, I've got to get out of here. and the like okay it's gonna be okay like i can take my own measures it just kind of maybe made me feel like i could like i had more control over the situation instead of just like immediate panic yeah i wonder if it has to it's probably related to brain plasticity and kind of rewiring um moving towards rewiring parts of your brain um by um
Adeel [40:32]: Yeah, associating desired behavior with some reward. It's interesting. And have you found that, you said it's giving you more space. Are you reverting back maybe to kind of your normal baseline? Or has this kind of been, since you've done these therapies, has the change stayed with you basically?
Malya [40:59]: You know, I really think it has. I think it kind of maybe taught me more that, you know, kind of I had that time. I had that, you know, that regulation of it. I did it about a year ago. And with neurofeedback, you kind of have to like, it's kind of giving your brain that kind of jello mold. And so you have to kind of. you know, keep up on it for those like 24 times, I think, I believe it's 24. And then, you know, it's just supposed to kind of like stay that way. And so I think that it has kind of, I think it has kind of stayed that way for me. And like, I've been able over the last year to kind of notice that I have more control over what I can do and like how I can help myself and things like that. I think, you know, it was really interesting to see kind of how that helped.
Adeel [41:52]: Yeah, that's really interesting. I'll do some more research, maybe put some links in the notes.
Malya [41:57]: I've got a website right here that I got my information from.
Adeel [42:00]: Yeah, if you want to email it to me after, I'll just quickly drop it in. Have you tried any other kinds of therapies professionally recommended?
Malya [42:10]: I actually have not. You know, my mother is in the mental health... therapy kind of field and you know obviously I have generalized anxiety disorder as well and so you know I've kind of had some things with that I don't know if you there's something called EMDR let me see what this stands for yeah eye movement desensitization and reprocessing which is I don't know I don't have a very good you know kind of definition for this but it's it's what I've understood from it is When you go into REM sleep, your eyes move back and forth very fast and kind of process those memories back into storage. But when you have kind of a traumatic memory, those memories don't. They stay kind of upfront and don't go back into storage because you when you're doing REM sleep. It just kind of doesn't process it. And so like the night of and and so my mother actually does a lot of that EMDR work. And so I've kind of, you know, tried to been hurt kind of guinea pig for that a couple of times and like it's just kind of moving your eyes back and forth and letting your brain kind of figure out its own you know path for that issue or that traumatic memory um and so that's been something that I've you know tried to you know put into I've had kind of therapy for for my but nothing for misophonia in particular. And we don't have to like put that in there. That's just side note.
Adeel [43:48]: Yeah.
Malya [43:49]: I'm not very good at describing that.
Adeel [43:52]: No, this is great. No, this is totally fine. And then, you know, people can, will look up more information if they want to. Did you find that when you were doing the neurofeedback that it was affecting your anxiety disorder as well? Or... like improving that as well? Or was it, uh, I kind of isolated to misophonia?
Malya [44:15]: You know, it did, I think it was supposed to kind of like, cause it's the whole process of it is just trying to get all of your brainwaves into that kind of normal pattern of what they're supposed to look like. And I think that it had the kind of same or similar effect on my anxiety and, um, kind of gave it, uh, gave it some more time. Like I felt like I had a little bit more control. over the situation instead of like you know and and it's kind of like taking opposite paths as i've gotten older like my anxiety has gotten a lot better and my misophonia has gotten a lot worse as i've gotten older um and so i think that you know over the last few years it's kind of gotten to be less of like it because when my kind of like adolescency time hit you know that kind of 11, 12, 13 is where my anxiety peaked the most and was just the worst of it. And so I think as I've kind of, you know, got a little bit older in the last couple of years, it's gotten a lot better. And I think that the nerve feedback helped with that a lot in just kind of making me feel like I have more control of the situation. Like I, you know, there's measures that I can take. There's like, there's reasons why I'm anxious. And it's not just because, you know, Like I can kind of associate I'm stressed out right now. I've got something big coming up or, you know, like I'm, you know, I'm sick or something like that. Like that this is why I'm anxious. It's not just because I'm weird or something like that.
Adeel [45:54]: Gotcha, yeah. Yeah, that's really interesting. I haven't heard your feedback described yet, I think, in any of the podcast episodes. Yeah, that's great if it's helping you and it's still effective. And I'm curious, how does misophonia manifest itself? Is it just kind of fight or flight? I've noticed people lately have been saying things like,
Malya [46:21]: they tense up they get really hot uh i'm curious if if your reaction is is more just kind of the uh you know extreme anxiety and wanting to leave yeah i um i have that kind of like really panicky fight-or-flight reaction that's gotten a lot better you know kind of after that neurofeedback but there's kind of that panicky okay wait i have to leave or like you know have to get out quickly and then I also it kind of depends on the situation obviously like where sometimes I'll be you know I'll be okay if I just kind of go and like de-stress and take some breaths and put some earbuds in or and sometimes it kind of just manifests itself into a whole whole panic attack like i get um my heart races or i'll have like heart palpitations or um and i'll have you know i'll be sweaty and kind of uh shaky and kind of hyperventilating kind of into that real state of panic attack um and it doesn't happen too often with the misophonia it kind of maybe you know like once a month it'll get to that point where it'll be that bad um And, you know, I think that that is something really interesting that, like, maybe should be a little bit more. It's awful to go through, but I know that a lot of people do. Yeah. Have panic attacks and, you know, maybe feel weird about that. But I think that that should be something that's kind of, like, you know, normalized or maybe given more skills for people to cope with that and just kind of day-to-day life. Because I know that I... I have kind of ways to cope with something like that, that maybe I've picked up.
Adeel [48:14]: Yeah, how do you cope with that?
Malya [48:19]: when it's, when it's being triggered, it's kind of like really just kind of getting out of that area, maybe going and like sitting outside or something like that. But when I'm, when I'm in kind of a panic attack state, it takes a while to, to get out of it and calm down. But as like, whereas if I were to just, you know, be frustrated or be a little bit, you know, anxious or have that fight or flight response, sometimes I can just kind of get out of it by, you know, plug my ears or something like that. But.
Adeel [48:49]: Yeah, you said the neurofeedback gives you some space in terms of like how long it takes to maybe really kick in. I think that's what you said. I'm curious if it makes your recovery faster or have you not noticed any change there?
Malya [49:06]: I really don't think I, I think the only thing I've noticed from the neurofeedback is, is that kind of space in between where I can like problem solve a little bit more. I have skills to help this. I, you know, I have earbuds in my pocket or something like that.
Adeel [49:23]: So it gives you, it gives you that time to remember that you have something.
Malya [49:27]: Yeah. It's not just, yeah, it's not just end of the world right now. Like I've got, Oh, hold on. Like I've got this to help me out. Something like that.
Adeel [49:38]: Well, yeah, Malia, yeah, this has been great. Maybe we should start to wrap up, but yeah, we could go on for a while because it seems like you've really thought about this a lot and have a lot of great insights here and tools. Is there anything, you know, anything maybe we haven't covered that you wanted to kind of get out there?
Malya [49:58]: No, not really. I think that's pretty much all my notes are covered. Yeah, I don't really have anything else.
Adeel [50:08]: That's great. Well, yeah. So, yeah, I want to thank you again. And I also want to say, yeah, it's awesome to see you kind of advocate for yourself at school. And I hope, you know, I hope to be reading some of your, a lot of your future writings. Thank you so much. That you'll share with people. And I know it's going to help a lot of people. And I know this episode is going to help a lot of people. So, yeah, it's great to see young people advocate.
Malya [50:31]: I really appreciate that. That's awesome to hear.
Adeel [50:35]: Thank you, Amalia. You can email me, hello at misophoniapodcast.com, or find us on Instagram and Facebook at Misophonia Podcast, Twitter at Misophonia Show. I haven't had time lately to send out stickers, but plan to send out a batch soon. So if you're anywhere in the world, anywhere in the world, wanting some podcast stickers, please just email me your mailing address, and I'll have them sent out to you for free. Don't forget to check out the miso list at misolist.com for more misophone-owned businesses. Music as always is by Moby. And again, wishing you peace and quiet.