Keara - Navigating college life with misophonia

S4 E1 - 3/10/2021
In this episode, Adeel speaks with Kira, a senior at Macalester College, about her journey with misophonia. Kira shares her experiences growing up with misophonia, including being triggered by family members and the challenges of dealing with exposure therapy suggested by therapists. She highlights the difficulties of living with roommates in college while trying to manage her misophonia, especially with eating sounds being a significant trigger for her. Kira also discusses the increased triggers she faces as she ages, the impact of visual triggers, and the understanding she has built with her roommates to navigate living arrangements that accommodate her misophonia. Furthermore, Kira touches upon the importance of talking openly about misophonia to build understanding and support networks, including a story of support from a friend who also suffers from misophonia. The conversation concludes with encouragement for individuals to speak up about their condition to foster more inclusive environments and the potential for creating support groups in academic settings to help others with misophonia.
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Transcript

Adeel [0:00]: Welcome to the Misophonia Podcast. Welcome to Season 4, the first episode of a new batch of interviews being recorded this month. My name's Adeel Ahmad, and I have Misophonia. On this episode, I'm talking to Kira, a senior at Macalester College, right around the corner from my house in Minnesota. It's amazing how many people around us have this condition. As you may remember, I kicked off Season 2 with another local Misophone, my next-door neighbor, in fact. Kira tells us about her issues growing up with miso and being triggered at home as well as eventually by her grandparents she loves. The therapists who thought exposure therapy would be a good idea and also now in college how it's been living with roommates navigating through her program while trying to keep her miso at bay. Interviews are happening daily now for season four, and I can tell you now there are some incredible ones. Really proud of everyone coming on the show and sharing their stories. Remember, they aren't doing this for me. They're doing this to try to help sufferers like you by showing the world that we're not alone, that this is real, and we're all trying to find ways to cope. A reminder, you can always reach out by sending me a message through the website, misophoniapodcast.com or email hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. Please hit the five stars if you're enjoying the shows on Apple Music, on Apple Podcasts, I should say. All right, now here's my conversation with Kira. Kira, welcome to the podcast. Good to have you here.

Keara [1:34]: Thank you. It's great to be here.

Adeel [1:36]: so as you know and this is the uh should be the first episode of the season um you want to tell me i guess whereabouts you're located yeah i'm in st paul right now um in minnesota so pretty excellent yeah so you're probably like a few blocks from me because i'm in st paul as well oh that's right yeah yeah And, uh, yeah, actually, uh, I think it was last season or season before I actually interviewed my next door neighbor who coincidentally has, uh, misophonia.

Keara [2:03]: Had you known each other before that or did you not at all?

Adeel [2:06]: I bought the house and, uh, total coincidence.

Keara [2:09]: That's really, that's, that's such a great way to meet somebody.

Adeel [2:13]: Yeah, I know. I know. Um, so yeah, maybe, uh, you want to tell me what you're doing? Are you a student at McAllister? I think we mentioned earlier. Okay. Yeah.

Keara [2:22]: I'm in my senior year. So, um, hopefully going to be graduating in about two months and figuring out how to be an actual adult. That's very exciting.

Adeel [2:36]: Yeah. And do you want to ask like what you're, what you're studying?

Keara [2:39]: Yeah, I'm, I'm studying computer science. So hopefully when I graduate, I'm going to be working with Medtronic, working on some machine learning algorithms for medical devices. So that would be pretty exciting. That's something that I'm pretty interested in, like artificial intelligence and, um, robotics and that kind of, um, I'm a big nerd. So.

Adeel [3:03]: Yeah. As am I, as, as, you know, many of us, I've mentioned the podcast before that, uh, um, I've heard from Dr. Johnson, big, um, audiologist in the space that this, uh, it's means a lot of our clients are engineers and, uh, So there's something about that. And I'm sure we'll get into, as we get into some of your story, I'm sure there'll be a lot of things that we've heard before and might resonate with people. But yeah, I guess maybe you just want to maybe talk about how's it been? So you're a senior. How's college life been then with MISO at Macalester?

Keara [3:42]: Mostly it's been fine, especially because only the first two years I was on the campus meal plan. So the main thing that bothers me is like eating sounds. So usually it's, but there was one person who is a lovely human being, but who just so very noisy eater. Luckily I'd never ate lunch with that person, but sometimes they would be like at the table across from me. I'd be like, okay, I just need to like go into my calm inner space and try to enjoy my lunch and this is a friend of yours um oh actually i don't even i don't know their name i just kind of like have this vivid memory of them eating their food um but so yeah so i'm sure you've called them names in your head but uh i try not to but yeah i have to admit probably i have oh yeah oh yeah um yeah we all do it we all done we all done that Um, yeah, most of my friends, luckily are pretty quiet eaters, or at least I don't eat with them often enough to cut. I've noticed that I start noticing individual people's sounds more and more, the more I get to know them. So when I first meet someone, I'll be like, Oh, this is so pleasant to be able to be around you. You don't make any sounds at all. And then, you know, if I've known them for three years, then I'll be like, I've heard that one little that one little sound you make so many times and then it like gets to me somehow.

Adeel [5:11]: Right. The pattern kind of imprints in your relationship with them. Do your friends know that you have miso or is it something that you just kind of keep to yourself?

Keara [5:21]: Usually I keep it to myself. My roommates know because especially since COVID, we've all been stuck in the same house for like a year together and we have a very small house. Sometimes I can like, hear eating sounds through the walls because we have very thin walls so i've definitely i did that's something i'd tell my roommates when we move in just you know when everyone sits down to have that sort of roommate discussion of just in general like what what everyone's needs and how we're going to work together as a household um that's something i always try to bring up right and you didn't pick your roommates before right it's kind of more it's kind of random um in my first year when i first came to college it was random but then luckily after that i've been able to pick who I room with. Although that wasn't really a consideration for me, like the misophonia thing in terms of my roommate selection. I just, because I think it's pretty easy to manage if we just have an understanding about, you know, I'll try and put on headphones or I'll try and you know, be in another room while people are eating a meal or things like that.

Adeel [6:27]: Right. So, I mean, the key thing is as long as you have a place to go to, like your own room.

Keara [6:32]: Yeah. Yeah. And that works almost all the time. I have, we have... two people in singles and then me and my roommate are in the double. And usually that's fine. Cause she's not eating in the room one or two times. She has been like eating chips late at night and I'm trying to sleep and I had to like, I'm so sorry, but like, I really not eating those chips in here right now.

Adeel [6:54]: Gotcha. Cause when else am I going to go sleep? Yeah, exactly. Okay. Um, and okay. So yeah, she'll sometimes eat later, but, uh, so her, did you tell her that you have me? So, or is it more just when the, when the problem arises, you kind of tell her what to do.

Keara [7:14]: I think I hadn't, we've been friends since our first year. We started living together in our sophomore year. And I don't think I told her until this year, actually, which probably I should have before. Um, I think, um, I've usually not had to mention it but I did have to have like sit down and have a conversation this year because again because of COVID it just has made it so so much more kind of like a consideration and I don't know if I like used the official word like Musophonia but I definitely you know I explained like this is something that causes me emotional distress when you do that, and it's not a personal attack if I'm asking you to stop, but that's just something I need from you. So that conversation went just fine. But I think it was helpful to actually have that laid out for me to clearly explain what my experience is because for a lot of people and like this is something that was really true when I was sort of learning that I had this with my family as a kid that like I didn't I didn't really understand like this isn't something that other people already know about and other people already experienced so that I didn't know at first that I would need to like explain the fact that like this isn't just mildly annoying it's like distressing you know um and that was something that I think was helpful for her to understand once i said that then she was like oh okay now i understand why you've been like giving me sideways glances sometimes yeah the glare yeah yeah that it's not like a oh i'm angry at you but it's just like i'm experiencing an emotion right now because of that trigger so

Adeel [9:01]: Yeah, I know that's a great approach is to kind of like explain it that way as opposed to coming at it as an attack on you're doing something wrong. It's more like I have a problem approaching it. Is there a reason why you're tentative like mentioning it to people? Like had you mentioned it to others in the past? Maybe you had a bad reaction? Oh, yeah.

Keara [9:25]: I'm trying to think.

Adeel [9:26]: I mean, everyone has their own experience with whether they tell her or not. I'm just curious. Yeah.

Keara [9:34]: I guess I was a little hesitant just because it's like kind of a most people don't know what the heck I'm talking about.

Adeel [9:40]: Right.

Keara [9:41]: When I try and say that and then I get into a whole conversation and blah, blah, blah. I also have congenital anosmia, which is probably unrelated, but it's from birth. I haven't had a sense of smell because I'm missing my olfactory bulb in my brain. That's another fun fact about me. That's another thing where I don't tend to tell people unless... it immediately comes up like someone hands me a candle and they're like, smell this. I'm like, sometimes I just smell it and I'm like, oh, it's nice. I don't feel like getting into it. I feel like it's that. I could sit down and explain this to you and you will ask me the same three questions everyone asks me.

Adeel [10:20]: Right. It's exhausting sometimes. A little bit. These conditions, it's like you've gotten used to it and just having to, yeah. I thought of sometimes having to bring it up after It takes so much energy just to kind of get over the, you know, the trigger that you don't want to have to then make a big deal about it.

Keara [10:39]: Yeah, definitely. And that's something I have definitely noticed that once I'm already feeling upset if there's a noise going on it's that's the wrong time to like have that in-depth conversation usually yeah absolutely so yeah i think if i'm if i have like a long-term enough relationship with someone where that conversation probably needs to happen then i usually try and like find a time that's just sort of like we're just hanging out and i can bring it up and then i try and find ways to like i actually i when i was in high school um i went to a therapist for a while for like social anxiety. And we also talked about misophonia. And so she had some great strategies for like, you know, like focusing on taking some deep breaths and like, you know, almost kind of meditative practices, which is like, I can sort of control those reactions from the sounds if I do that, but I have to totally concentrate on it completely. So it's just like not worth it to me. Like, I remember she brought in, she had my parents come in and bring like food and eat it loudly in front of me. And I was like, no, this is not going well.

Adeel [11:55]: Yeah. That's exposure therapy. Exactly.

Keara [11:58]: I was like, I understand what you're trying to do here, but I like, this is not gonna, this is not it. You know, like this is not working out. Um, just cause like, I feel like it's, um, needs to be kind of a, uh, everyone working together to like, I don't think it should be just on me. right to um resolve the situation like i don't think it should be just on other people to be completely silent but i also think it's reasonable for like me to have feelings and like express them some you know yeah um yeah that was an interesting experience yeah had she heard of it before or is it something that you told her and then she google searched it and unfortunately hit upon exposure You know, I should have asked her because I don't actually know. I don't remember whether it was like, oh, I've had other people who had this and this was helpful for them or not. Maybe you're right that that because it was something I was pretty hesitant when she mentioned it. I was like, I don't know about that.

Adeel [13:02]: And you're paying for that. I mean, you basically paid for it. You paid for your parents to be eaten. But so she had did she have other evidence? She come around having other useful tips like sounds like that. Oh, it was very it was.

Keara [13:13]: Yeah, it was really useful advice. I mean, especially, you know, even though that didn't end up being like my long term, you know, complete strategy for managing. having us phonia like it was helpful for those moments where like i haven't explained it to someone and i need to just like get through the next five minutes where we're eating lunch together and like not be rude um and then i can explain it later so like that was actually helpful it's just the um i guess you know in a sense like it was also helpful for me to understand like okay this is actually like a real valid thing that i'm feeling like i'm not just blowing it up in my mind like this is actually something that's very difficult for me to um control myself. Like I actually, when I was talking with my roommate about this, it became a little bit of a source of tension, but we worked it out because we have a very strong friendship. But like that was actually something that was helpful for me to be able to tell her like that I had that experience so she could kind of understand like, oh, this is like a thing, you know, it's not just like a, like a little.

Adeel [14:16]: Right. It's not like a, it's not like this little annoyance of a pet peeve. Yeah. Right. Yeah. So you said, so it did become a source of tension when you start to mention it to her or the glaring and all that stuff was starting to be the tension?

Keara [14:31]: Yeah, I'm not sure exactly where the tension came from, but there definitely was. And I think it's partially just, you know, like living in the same space together for so long during a pandemic when there's all kinds of other stressors. Like, I think that that sort of all contributed to where it's like, if i'm bringing up something like could you please not be eating that loudly right now and if she didn't understand already exactly why i was saying that then like that kind of makes sense why that could be a little bit like why are you suddenly telling me this like why are you suddenly asking me to do something that from my perspective is totally reasonable for me to be doing in my own house like right i think that was her first reaction was like i live here too and i was like that's super valid and you're correct but like I also live here too. So like we need to find a way to both make that work. And we did luckily.

Adeel [15:28]: So I'm curious, like, yeah, how did you get over that little, with just kind of time and just explaining it more?

Keara [15:35]: Yeah, I think so. And I think definitely like kind of allowing the conversation to be a little bit tense and then just like come back to it later. Because like I do understand like why that is frustrating for people when this is something that I need from them because like, what I found is like people genuinely don't know when they're making sounds when they're eating. And even if they do notice, it's like basically like the way that we eat is so subconscious. It's like basically impossible to consciously change that sometimes. So like, I totally understand where that frustration is coming from, from the other end. I kind of lost track of what I was talking about.

Adeel [16:24]: No, no, this is good. We were kind of talking about how you and your roommate got over that tension, and it was probably just time and explaining a bit more and allowing that tension to happen. And then, yeah, you mentioned the very... um what we all experience is like it's we it's it's the other person usually they have no idea that they're causing these sounds which is such such the opposite i mean it's hard for them to understand what we have but it's hard you know it's hard for us to understand not being aware of sound yes and so um it sounds like you guys kind of came you know met in the middle at some point and were able to move on yeah i think i think that's the important thing is definitely like meeting in the middle and

Keara [17:10]: under like having empathy to be able to understand the other person's experience. Cause it's obviously like very different for both people.

Adeel [17:18]: Yeah. And so another, I mean, uh, you know, you mentioned stress and then you're probably both are experiencing that. And as we know, stress is a huge factor and, uh, many things, especially misophonia. So how has, how's that been? Um, you know, you're in pretty intense program, computer science at Macalester. Um, has that, um, you know, pulled you, uh, you know, one way or the other with misophonia? I think it's kind of just... Or you kind of have been able to manage it at this point, like, using whatever strategies that you have.

Keara [17:51]: Yeah, for the most part. I would say it's something that the Musophonia, the stress from that is, like, usually pretty temporary. Like, once I kind of go sit somewhere quiet for 10 minutes, then I, like, feel better again. I think it's on certain days when I've just been having a really bad week or something, it'll kind of like ruin my mood for a while, but, but usually it's, um, pretty compartmentalized, I guess. Um, which is good.

Adeel [18:22]: Yeah. So, yeah. Well, so what are your, uh, so you, you mentioned headphones, what are some of your, uh, your tricks of the trade that, uh, that you have?

Keara [18:31]: Um, let me think that, yeah, definitely listening to some music with,

Adeel [18:36]: And is it generally music? Like, it's not like anything like white noise pumped in or brown noise?

Keara [18:42]: Yeah, I've tried white noise, but I mean, like, it's kind of boring. It's a little boring. And it's also like I had to turn it up so high. It was like hurting my ears. And then because white noise is often kind of a constant sound, I could still hear the other sounds around me coming through because they were, you know, yeah.

Adeel [19:01]: Yeah, that's why I prefer music as well, at least because you're boring. I think maybe you have something to think about. Yeah, yeah.

Keara [19:07]: Yeah, definitely. Plus it's fun to listen to music. So definitely, yeah, definitely music. Like going into a different space. Sometimes even if I can just be somewhere where I'm alone. So even if I'm hearing the sound, I can just be like, grr, or like have an angry expression and like not bothering anybody.

Adeel [19:28]: I have a room that has a bunch of holes in the wall now because you've... Exactly.

Keara [19:32]: Yeah. And that's something that can be good. I think this was actually something that I remember I had originally talked about with the therapist when I was in high school for anxiety as well. This is a good thing. But just like when you're having some kind of negative emotion, like that's not in itself going to hurt you. Like it's okay to... be having a negative emotion and like that's the worst thing that's gonna happen in that moment and sometimes just like remembering that um just remembering that is helpful for managing it in the moment because especially if i know like this is we're gonna be done eating in 10 minutes so I'll just kind of like feel a little upset.

Adeel [20:20]: Yeah. No, we've mentioned that. Yeah. So that's a great approach. What about doing like exams? And, you know, because you can't obviously, I know I've talked to some people who have been able to kind of do things and somehow be unable to. get into a different room but curious uh you know how that's been for you because generally it's not the case and you know you don't have access to headphones or or yeah just kind of like at the whim of whoever's around you yes no i totally feel that way just at at other people's whim and also because you're not allowed to like talk to each other during an exam so you don't even have that option of like telling people to shut the f up yeah

Keara [21:04]: Those are two very opposite strategies. You're thinking in your head, shut the F up. And you're saying out loud, excuse me, you know? Yeah. I, I think usually I've been very lucky because when you're taking an exam, you're also not eating. So sometimes people will be like making dear little sounds with their nasal passages or something or clearing their throat. That can be very bothersome. I've definitely had experiences around like, you know, like, okay, this is just what's happening right now.

Adeel [21:35]: Some people do that at the beginning of every question where they turn the page and then they have to like exhale or something.

Keara [21:40]: Oh, like they lick their finger.

Adeel [21:41]: Yeah, exactly. Right, right, right. But that's great that you've been pretty lucky to get through.

Keara [21:48]: Yeah, I have been. And sometimes I can, oh, there have been a couple times where I've been in class and even not during the exam, even just like during the lecture, I've just like, Literally, I just like plug my ears. I don't even try it. Sometimes I get to a point where I'm not even trying to be subtle about it. I'll just like, because I can still hear the professor talking. Right. But I can't hear other small sounds. And like if I'm kind of like, you know, moving my fingers a little bit or something like making a little rustling sound, then that sort of act like as if it was a white, like white.

Adeel [22:26]: And this is if you don't have headphones on you, right?

Keara [22:28]: Yeah.

Adeel [22:29]: Yeah. Do you have a, do you have a, um, and we will get into visual triggers as well, but do you, do you, do you prefer to sit in the front or the back or whatever?

Keara [22:40]: I haven't, I haven't really noticed any preference like around sounds with that, but I definitely, okay. There was a, right before we went on lockdown, when I had actual in-person classes, I was taking a psychology class. And one of my close friends was also in the class. And we were like the two juniors in the class, mostly first years. So we'd like to sit together, but there was this, the preceptor actually was the preceptor of the course who would sit in this one place in the corner in the front of the room and just constantly like laying with their mouth somehow, just like, I don't know. I would sometimes hear a sound and try and like look over and like, just to understand what was this person even doing with their mouth to like produce that sound. Like it was kind of impressive actually, but really, bothersome for me. And unfortunately, I was always late. I was always running late and my friend was always early. So they would go and sit right next to the precinct. I don't know why I didn't just like after class one day be like, can we sit somewhere else in the classroom? Other than that. So that probably would have been a good solution. But I ended up just when I would come in late, I would just go sit in the other corner. And then I wouldn't get to sit next to my friend, which is sad. But that was partially my fault for like being so late all the time.

Adeel [24:01]: You know, it would be interesting if some sort of psychology, if you kind of raised your hand and offered like, oh, I heard this new condition, misophonia. You know, people who, you know, one of the highest triggers happens to be people who, you know, are sitting down making strange noises.

Keara [24:19]: That would have been amazing. I absolutely should have done that.

Adeel [24:23]: What a missed opportunity. But semi-seriously, it would be interesting. Because, yeah, these psychology classes have tons of students. And I think that's a perfect opportunity to, you know, when it makes sense to kind of maybe bring up misophonia, at least you have people around you who might, even if they don't give a crap, like at least it's in their head now, like that term. And it might be a kind of a free way to raise awareness with a captive audience. I may not be awake at that time, but you know.

Keara [24:53]: Yeah. Yeah, I remember. Yeah, I did bring up the smell thing in that class, and everyone was pretty interested in that.

Adeel [25:03]: So are you able to taste as well? Because I know those two senses are linked.

Keara [25:07]: Yeah, they are very closely intertwined. So I would say I've heard the term like flavor versus taste. used before where flavor is the combination this like combined experience in your brain of um the taste on your tongue and the smell that you're smelling so i don't have that experience i guess those like really rich complexities and distinctions between like two kinds of hair or whatever like i can't taste that but um Like, for example, you know, when they have flavored lollipops or flavored soda, I'm like, I kind of don't believe it. I'm like, no, you're lying if you're telling me you can taste the difference between those two things. Like, there's no difference.

Adeel [25:53]: Yeah, gotcha. Yeah.

Keara [25:56]: That's one of the questions, classic question. I usually get either, when I was a kid, I used to get, so can you breathe through your nose? Oh, wow. which was strange because it's nothing to do with my nose.

Adeel [26:09]: Yeah, yeah.

Keara [26:10]: The other question is usually, how can you taste?

Adeel [26:12]: The whole taste, yeah, yeah. Yeah, I don't have any other interesting questions about that. So I had to ask the others. Were you, so you haven't mentioned to your, I mean, it's funny to your, much to your friends, I'm curious if you brought her up maybe at school with teachers and got any kind of like accommodations.

Keara [26:32]: Oh, that would have been an excellent idea. No, I guess I, now that I'm talking with you, kind of I'm realizing how much I've just sort of taken the burden on myself to like deal with it myself and like not inconvenience anybody else at any cost, which is probably not the healthiest way to deal with it.

Adeel [26:54]: Well, many of us do that, especially like before we even knew what it was. And honestly, I mean, you know, if you are able to get through it, it sounds like you are. These are good skills. You're building up for real life, for adult life when, you know, you won't always have that opportunity to get accommodations somewhere.

Keara [27:12]: Yeah. I know a lot of people, my college does very well with accommodations compared to some institutions, but I also know a lot of people who it has not been a great experience for people who might need extra time on assignments or things like that. Sometimes professors will just tell you, too bad. I know you have an accommodation, but too bad, which is not how that's supposed to work. Not helpful. Right. Sometimes accommodations, even in college, which is supposed to be like this little bubble where everyone takes care of you, sometimes that doesn't even work there, which is unfortunate. Maybe that was part of why I didn't go that route, because I don't necessarily have a lot of faith in that system. Although talking to individual teachers is usually a really good strategy, even just about anything.

Adeel [28:12]: yeah no i mean you're right no i think that's uh that's it's a healthy approach just not to have 100 i mean to be open if if people will accommodate that's great but not to rely on that um is is it's good because yeah that's not always going to be the case that people will be nice and accommodate so um but i guess we need to trudge through definitely definitely won't accommodate you if you don't ask or explain the situation Right. Um, yeah, maybe let's, uh, we've talked about, yeah, your, uh, your experience here at college. You want to go back to kind of maybe like way back to like early, early time, early days for you. Like how, how did this all kind of like come up for you?

Keara [28:56]: Yeah. Um, I remember it happened pretty suddenly that I started noticing eating sounds at all. Uh, I remember every year my family goes to visit my grandparents, And it was about happy, you know, in the summer, it was about halfway in between two of those summer vacations. When I started noticing when we were eating as a family together, like at the dinner table, um, how much it bothered me that I hadn't ever had never bothered me before. And it was really quickly like a big, that was one of the major stressors in my relationship with my family at that point and for many years after that because none of us understood what was going on and this was at a time when i was kind of like just entering like my angsty tween kind of like um stage where i was making trouble for picking fights with my parents whatever for other reasons that were maybe less valid so then when i was kind of like acting angry at the dinner table and i didn't understand why they didn't understand why Um, they just thought I was, I don't know, like being rude for the sake of it or something. Um, that was common. So, yeah. Um, and then I remember it was just like, um, when this all started, it was just like a month or two until we were going to go on a vacation to visit my grandparents. And I was thinking of it, like, I was so looking forward to it because, you know, then I'd be able to, I figured like, then I'd be able to be with people who maybe weren't as noisy when they were eating. Cause I figured maybe my family is just really noisy eaters. Um, and like, I would, I would try and explain to them sometimes, like you're being so loud, you're making all these sounds and the sounds are so gross. And they would be like, we're not making any sounds. And I would be like, you are. And then they were like, I would think I was crazy. And I think they were crazy. And they would think I was just being like rude. So that wasn't working out well. So I was like, maybe when I see my grandparents, it'll be a little sanity check and they'll like understand. And they'll be like, oh yeah, you know, your mom is a little loud, but whatever. Yeah, unfortunately. So we got there and I was so excited. And we sat down to eat lunch together when we arrived. And they, both my grandparents, love my grandparents so much, but they, are the loudest eaters I have ever met. So loud, so much lip smacking. So it just moist noises. So I was like in hell. Um, and I just remember this like sinking feeling of horror, like, Oh my God, I'm never going to escape this. Um, yeah. So then that's actually, that's been a problem with my grandparents a lot where like, although my parents and my sibling have kind of gotten to understand, um, what's going on with me I think my grandparents still don't really understand and that's you know sometimes I'll like have to leave in the middle of the meal when I finish and like go downstairs for a few minutes and come back up when people are done eating and I think they take it a little personally but like I feel like no matter how many times I try to understand try to explain because there's this whole history when I was a kid of like all these arguments between us and all these negative associations it's like hard to undo that whereas like with new people who didn't didn't see it when it was starting and when i was so confused about it when you know everyone was getting into so many arguments about it um with new people that i meet now it's possible for me to have much healthier interactions around it um yeah you can frame it up front yeah yeah and and you know then they don't already have all these resentments toward me for like me being rude to them in the past or whatever But with my family, I think it's kind of too late for that. We still have a lot of arguments about it sometimes.

Adeel [32:53]: And that's with your nuclear family, too, or your grandparents?

Keara [32:57]: Yeah, especially with my grandparents, but also with my nuclear family. Just because it was like every day at dinner, we would get into a fight, you know? Yeah.

Adeel [33:09]: And was it, did you just have to stay at the table at that point, like not knowing anything?

Keara [33:15]: Yeah, I would try. And then I remember, I remember I would, in my mind somewhere subconsciously, I must have been trying to find an escape route because I would like have to go use the bathroom. Like when we would be at the dinner table, I would like suddenly really have to go use the bathroom.

Adeel [33:34]: And then I would be able to run.

Keara [33:35]: Yeah, exactly. I would like run out and be like, I'm going over here. And my parents would be like, okay, this is weird. I remember pretty early on, my mom actually took me to the doctor and she mentioned it to the doctor. She was like, I'm worried because, you know, Kira is like, this thing is happening and I don't understand. And she's like always upset at dinner. And she's like, then she's always having to use the bathroom during dinner. Like, I don't understand. Something's wrong. And the doctor didn't know it was wrong either. So that, that was, could have been an opportunity for us to learn about misophonia, but unfortunately it wasn't. So we, there were several more years where we were just trying and failing to sort of like figure out what was going on and why, why all this tension was happening. There was actually an app that was sort of like a, science fun facts for kids app that was sort of interactive that was all about like the senses and like sensory illusions and stuff like that you know like that those tones they're like that sound like they're uh always going down forever and ever and ever i don't know if you've heard that one before um i forgot maybe not that's oh um was it a general like a science education app or yeah kind of like yeah yeah and So that was one of the things that I remember really distinctly while I was like sitting in my room on this app, like going through all the little demonstrations. And, you know, one of them is where like, there's a bunch of notes in a scale and then all the notes go down at once. And then like slowly they put the same note back up at the top, but it sounds like it's really do, do, do, do, do, do, do, do, do forever. Anyway, that was an interesting one. Then the next one was, were telling you what misophonia is and the next little interactive thing in the in this app was like someone the sound of someone chewing gum really loudly and i was like ah And then like I hit next and then I was like, did that bother you? And I was like, yes, yes, that bothered me so much. And they were like, you have Musophonia. And I was like, oh, my God.

Adeel [35:47]: I have not heard of this. I have not heard of that. It's funny to throw an app. Do you remember the name of this?

Keara [35:54]: I wish I remember the name of it. I can try for it after.

Adeel [35:57]: But yeah, interesting. This was obviously a light bulb over your head. Yeah.

Keara [36:03]: Yeah, so I definitely, that was the moment when it like clicked. That was like, oh, I'm not crazy. Like, this is a thing. And then I like talked to my parents about it and they're like, oh, that makes so much sense. Yeah. So. And did that help?

Adeel [36:20]: Yeah, obviously. Is that when they got the psychologist appointment?

Keara [36:28]: That was a couple years later again. This was probably when I was in elementary school still or early middle school that I saw that on the app. And I think there was a little bit of mutual apology that happened. Like, I'm sorry we... didn't believe you before like um because i guess they didn't they thought i was making it up until that moment when they were like oh this is like other people have this too which is a little frustrating for me that they like didn't trust me to like it wasn't valid until like some like science person told them it was valid like why were my feelings not valid until then but anyway that's fine um i understand i was like a kind of annoying little kid whatever but um that was interesting But it did help because then we kind of had this moment of like a little bit of mending and more mutual understanding after that. Because we had this sort of outside context to understand what's going on.

Adeel [37:29]: Yeah, that's where it always gets a little interesting because you get that little, I call it the honeymoon period, but I'm assuming...

Keara [37:36]: um in the ensuing years it doesn't it's not like a magic pill it's um now it's like you both know like everyone knows about it but you're still getting triggered exactly and we still fall into the same patterns where like i i think i don't even realize you know when i start sort of looking grumpy i don't even realize i'm looking grumpy i think i'm doing great and then my family is so attuned to those little cues like just as attuned as i am to those little sounds that they make They're so attuned even subconsciously to like knowing when I'm getting annoyed, then they'll start getting defensive and then I'll get more upset and then we'll both get upset at each other. It's like, even though we both, we all understand exactly what's going on now. It's those patterns are just in there in this like dynamic. So it's really hard to fix.

Adeel [38:25]: Do you think that's right? Do you think it's part of that because of that, the baggage coming in? Because it was not framed up front. Yeah.

Keara [38:32]: Yeah, definitely. Yeah. So that's, that's too bad. That's like probably one of the more, probably one of the biggest sources of like, if I still have arguments with my family, that's usually what it is.

Adeel [38:48]: What it's about. Do you feel like it's caused like a general rift, like a distance maybe between you and your parents? Or is it just kind of that? That's the topic that is kind of isolated, but it causes a lot of stress. But otherwise, you guys are close.

Keara [39:05]: I think, yeah, we're definitely, we have, me and my parents and my sibling and my grandparents, we all have a really close relationship. And I think it's definitely something that, like, has caused a lot of hurt, but I think it's, you know, it's not that it was nothing, but I think it's also something that hasn't, you know, it has affected our relationship and our dynamic, but not to the point where, like, we aren't as close as we could be or anything. It's definitely an unfortunate thing, but I think luckily we have much more positive memories and positive connections than we have that. It's more positive. The positive outweighs the negative, I would say.

Adeel [39:48]: yeah yeah that's great um that's great um and what about our friends around that time were you um because when yeah when you were in elementary junior high high school how did uh obviously you did well in school because you made it to where you are now but um yeah did it yeah like how did you were getting triggered at school some people were not i mean somebody have talked to you it was really just at home i'm just curious how things were socially for you yeah i i remember

Keara [40:17]: I don't remember being triggered at school or with friends. I remember mostly at home. And I think part of it is because of how much time I spent at home versus how much time I would spend with any individual friend. I'm trying to remember like a specific time when I would be triggered by something like eating meals with friends. But I don't think so.

Adeel [40:45]: Yeah, that's not uncommon. Yeah. Thankfully, otherwise.

Keara [40:50]: Yeah, thank God.

Adeel [40:53]: Yeah, interesting. Yeah, okay, so socially it didn't really affect you so much. So what about, so you said you're kind of a senior. You're looking at ahead at going into the workforce. Have you done internships, like been in an office environment before? Yes. Okay.

Keara [41:10]: Yeah, so, and that's been fine. I haven't, I don't think, I mean, I'm sure I've been slightly annoyed by things here and there, but for the most part, I mean, working in an office environment A, I probably have my headphones near me so I can.

Adeel [41:25]: Yeah.

Keara [41:26]: Or I have my own office sometimes.

Adeel [41:28]: I was going to ask, what was like open office or closed?

Keara [41:32]: Yeah. There was one internship I had where me and another intern had an office together and she liked to go eat outside. So that was fine. She liked to go sit in the sunshine and eat. So that was perfect for me. And then the other internship I had was, yeah, an open office plan. but there was also like a nice kitchen area with a view. And so I think most people congregated in the kitchen area. So I could control that a little more and decide like, I'm going to decide to venture into the kitchen and have a social meal. Or like today I'm feeling a little on edge. I'm not going to do that. You know?

Adeel [42:10]: Yeah. No, hold on to that freedom. Yeah. Cause I, I, uh, yeah, I personally don't like to have group lunches and stuff, but it's, it's good to, yeah, it's good to have that, that freedom. And, and also, yeah, that's kind of the, one of the, uh, one of the good things about getting into adulthood is that you do have more control over your environment. Like where you live, you're not going to be with a roommate for the rest of your life. And also where you're working, you'll be able to just take lunch out whenever you want and wherever you want. So that should be good. Have you noticed, kind of on that point, another thing people mentioned is that as they're getting older, they're more things are starting to trigger them? Like you said, obviously eating noises are big for you as they are for me and a lot of people, but have you noticed the types of triggers start to widen?

Keara [43:01]: Yeah, that's a really interesting question. A little bit. Yeah, I'm trying to think of... I know some people get bothersome with pens tapping or something, but it doesn't usually bother me, although... Every once in a while, I've had little sounds like that start to bother me. But I haven't noticed any regular, regularly over time, more of the things. So that's good, I guess.

Adeel [43:32]: What about the visuals? I don't think we mentioned that yet, but do you get triggered by visuals now, kind of before a sound, or even if you don't hear it?

Keara [43:45]: yeah definitely a little bit yeah like if i can um if i can see someone eating especially if i've heard them just then and then i like put on headphones or something if i see them i have to like i have to like turn away or like my eyes right right yeah definitely although i would say that's that's less intense than um that's less intense than the sound triggers right Which is too bad because it's kind of easier to control whether you're seeing something than whether you're hearing something.

Adeel [44:20]: right oh and also um have you you know i talked to um uh natalie who's uh at ucla and she actually started a group um student group for misophonia um it sounds like you you probably it sounds like you haven't met anybody else who has misophonia at least at school or maybe maybe you have or i think i've met one person who has it yeah who is a friend of mine who uh

Keara [44:48]: crinkling bags is the one thing that they like can't, they can't listen to. And I feel bad because I totally know that experience. And then I always like forget and I crinkle a bag near them and they like flinch. And I'm like, I am so sorry.

Adeel [45:04]: Yeah.

Keara [45:08]: Um, I feel like we might've talked about it after, um, we, we were playing D and D together. We were in a D and D campaign. Um, and, uh, one of the other people who was playing had this, you know, little bag of chips from the vending machine and was, you know, opening it, crinkling it, and like every time they would eat some. So we were probably both actually pretty annoyed by that for different reasons. And I remember kind of like looking at them, because this was actually, I think maybe the second time that this had happened, where like the first time they had eventually said like, could you not crinkle that bag? And the other person was like, oh, sorry. and then stop crinkling and then like they forgot and like the next week they had a bag again and I we like I remember me and my friend like silent connection across the table we like had this little look we were like oh my god and so I they were actually eating fairly quietly so I wasn't too bothered but I like could see it in their face like they were just because they had already asked the person and the person didn't do it and this is a very polite like Minnesotan so I knew they weren't going to say anything so I said to the person, can I get you a paper towel to put your chips on so you don't have to get them out of the bag? And they were like, oh, sure. And then after, my friend was like, thank you.

Adeel [46:29]: Like, you have saved me.

Keara [46:31]: So we have a little alliance, which is nice.

Adeel [46:35]: Interesting. Yeah, cool. Yeah, because I was curious if you've met anybody or thought about maybe starting a student group. It'd be great to see one of these at every school and just kind of get all these people who probably don't know, your friend probably has no idea that it's a real thing, kind of like where you were 10 years ago or so.

Keara [46:57]: Yeah, and that would actually be really helpful just because I'm sure that I do know other people and I just haven't, we haven't, hadn't any reason to talk about it, so I don't know.

Adeel [47:06]: Yeah, yeah. Well, we're coming up to, yeah, close to the, you know, top of the hour. Is there kind of, you know, is there anything kind of you want to mention to people, maybe who are also in school or otherwise, about MISA, what you've learned or your experience?

Keara [47:27]: I would definitely just say, you know, don't be afraid of talking about it. you know, especially for people who are coming into college, there's a lot of stress sometimes around, are people going to like me? How am I going to find friends? Like, um, and I would, I mean, I've been very lucky to be at a college where there's a lot of diversity and people really value people from different experiences already. Um, but I, I would say, you know, as long as you're just, you're being honest and you're being polite, then other people are going to notice that and like give that back to you. So that'd be my biggest, piece of advice to give or just words of encouragement, I think.

Adeel [48:07]: Yeah, no, that's great. That's important. And as we mentioned before, the sooner you can talk about it and frame a friendship and get it out in the open, the less, you know, weird baggage you'll have before you inevitably do have to talk about it.

Keara [48:23]: Exactly. Yeah.

Adeel [48:24]: That's key. Cool. Well, yeah, thanks again for reaching out. And yeah, this was really interesting. Hopefully after pandemic, we can kind of get a little group going in St. Paul. That would be great.

Keara [48:39]: That would be awesome. Yeah. Oh, my God. There's so many things to do after the pandemic is over.

Adeel [48:44]: Absolutely.

Keara [48:44]: That would be nice.

Adeel [48:46]: Thank you, Kira. Great, great way to kick off the new season. If you're enjoying the shows, don't forget to leave a review. Give us a follow and join the conversation on Instagram or Facebook, Misophonia Podcast, or Twitter at Misophonia Show. Music, as always, is by Moby. And until next week, wishing you peace and quiet.