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Adeel [0:00]: Welcome to the Misophonia Podcast. This is Season 6, Episode 3. My name is Adeel Ahmad, and I have Misophonia. This week, I'm talking with Grace, a college student majoring in neuroscience, hoping to make an impact on Misophonia in the future. We talk about childhood trauma, dealing with high school and getting accommodations, the evolution of her parents' understanding of her miso, and the many dimensions of guilt and shame about her reactions and the way they affect those around us. Remember, you can reach me by email at hellomissiphoniapodcast.com or find me on Instagram or Facebook at Missiphonia Podcast. and Twitter at Misophonia Show. I want to again thank the Patreon supporters. If you feel like contributing, patreon.com slash Misophonia Podcast has all the levels available. And of course, one of the best free ways to support the show is leave a quick review or rating wherever you are listening to this podcast. All right, here's my conversation with Grace. Grace, welcome to the podcast. Good to have you here.
Grace [1:06]: Thank you. Thank you for having me.
Adeel [1:08]: Yeah. So, you know, I always like to kind of get to know where people are located. You want to kind of share kind of where you are and maybe what you do?
Grace [1:19]: So I live in New York, about an hour above the city. I go to school in Rhode Island and I'm studying clinical neuroscience.
Adeel [1:28]: Clinical neuroscience. OK, great. And are you is that a... grad at grad school there or or doing uh no i'm a rising i'm a rising junior so it's under okay gotcha okay cool and is it in person now or is it still kind of virtual it's probably back to in person right yeah it's in person it's been in person for the past year my freshman year was like all virtual and then some in person So clinical neuroscience was part of that decision based on your experience with misophonia or something that you were always interested in?
Grace [2:03]: Yeah, it was my misophonia was definitely the first thing that led me to it. Originally, I wanted to go into pharmacology because I wanted to find a medication for it. But I actually looking more into pharmacy, I just don't like the world of pharmacy, just like how big pharma works. I didn't really want to be a part of it. So I wanted to be more on the science side of it.
Adeel [2:30]: um you don't like marketing drugs to everybody um yeah they do some good stuff but yeah the whole marketing financial side is yeah sometimes you don't want to look at how that stuff's done yeah but um okay yeah fascinating this is yeah this is really interesting so you It sounds like you've put a lot of thought into it going back to high school. Maybe, yeah, maybe let's just start at the beginning and just kind of like walk through your journey. How did this all start for you when you started noticing your symptoms?
Grace [3:03]: So my earliest memory was, so the way our school district works is up to fifth grade is elementary school. So you go to school later than like the middle school and high schoolers. And I have three older siblings. So I remember going into sixth grade, I really didn't want to eat at the same time as my older sister because she ate her cereal without milk. Um, and like, that's my earliest memory of it and being like, no, I am not sitting there eating with her. Um, and then I don't have another memory of it until about like a year later. Um, I had something traumatic happen in my life, um, a few days before I turned 13. Um, so. When I eventually saw a psychologist, we think that it was kind of a trigger for it to like get worse, I guess, because I think it was there before. It just wasn't nearly as severe because after that event occurred, it just everything started with sitting with my family at dinner. i couldn't sit there for more than two seconds without like bawling my eyes out bugging my ears um just like i would shove food down my throat just so i could leave the table as fast as i could and like i'm sure as like i've heard some of the other podcasts it's very similar to like everyone's like what is wrong with you kind of like no one knows what's going on my family is like why can't you just deal with it yeah So that was like the first probably two years were like that. And it was a gradual like, OK, I'm going to wear headphones during dinner. And then the visual triggers started. So that didn't really help much. And then I started eating in a separate room. And that's been happening since I was like 15.
Adeel [5:01]: yeah yeah a lot of interesting things here because uh obviously you know trauma comes up um but interesting that you noticed it uh about a year before so um uh yeah i just had a conversation with uh yeah another therapist kind of uh actually i have quite a few conversations now just trying to dig into like maybe is there a connection with trauma but then or is it something maybe epigenetic where there is something that makes you more i don't know susceptible maybe it sounds like maybe you noticed something early on uh well about a year before that that that maybe there's something there and just like you said maybe just got kind of amplified um when that uh event happened um when when the the cereal situation was it for that year was it was it all was it just one day that you noticed it or was it kind of every every time your your sister had cereal and it was just kind of specific to that one type of trigger
Grace [6:01]: It was, I just like don't have, and I'm not sure if it's like my brain blocking it out. I just don't have memory of it. I do think that I scheduled myself like around, like I would have breakfast a separate time as her.
Adeel [6:15]: Okay.
Grace [6:16]: I remember specifically saying to my mom, like, no, I'm not eating at the same time as her.
Adeel [6:21]: Yeah. And for that, but you didn't notice, well, you don't remember any other types of triggers for that year until the event happened?
Grace [6:31]: No. It's weird. It's really just the serial.
Adeel [6:34]: Yeah, interesting. Okay, well, yeah, good data point for someone to maybe think about. Okay, so then, yeah, so obviously, as you mentioned, similar patterns then after... you know, visual triggers start to take hold as well. And so your parents' reaction around that time, was it helpful at all? Or it sounds like it was the usual kind of pushback.
Grace [7:02]: It was the usual kind of pushback. It was just the...
Adeel [7:06]: Was it getting into kind of a mocking, too? I mean, you had a lot of siblings, so I'm imagining quite a, you know, a lot of different older siblings, maybe.
Grace [7:14]: Yeah, they're all older, so it wasn't as much of, like, the chewing in your face on purpose kind of thing. But it was more of, like, it was just kind of, like, what the hell is wrong with you kind of thing. And it, I... I don't know. I just had this theory about older siblings that they just don't like to acknowledge that a younger sibling has, like, maybe something worse than them.
Adeel [7:42]: Yeah, yeah.
Grace [7:44]: Um, so I think that's what it was. It was just like, kind of like a, your life isn't that hard stop.
Adeel [7:51]: Right. You're right. Especially the quote, I don't want to quote unquote baby of the family. Traditionally it gets a little bit more, well, the other kid, I guess the other get ignored or they get just babied. Um, you know, But I can see, yeah, when you're the older sibling, you come up thinking, hey, you're just a more pampered version of me. So what could your problem be? Yeah, I mean, not something we want to hear either way. At least you weren't getting teased and bullied. Or maybe you were. I don't know.
Grace [8:23]: no it was just um i think it was just frustration from everyone um because it was just a no like we had no idea what was going on and so that was the hardest part of it like those first couple years where it's like my parents are just frustrated because they're like what is happening with my daughter that she can't sit at the dinner table yeah or like be breathed around because um i also i had i think it was on one of your podcasts i had heard that like dads are usually the first trigger um and that was the same for me um my dad is i don't know if necessarily the first but like definitely the worst um just any noise he makes
Adeel [9:10]: So not that supersede or that even more so than your sister's cereal eating?
Grace [9:17]: Yes.
Adeel [9:18]: Okay.
Grace [9:19]: Because my sisters, it's like I do have some like certain triggers with them. Like, for example, one of them when she clears her throat, like that's a trigger for me. But my dad, it's like literally anything he does.
Adeel [9:31]: Everything. Yeah. Yeah.
Grace [9:33]: And it's horrible because I obviously I love my dad very much and I don't hate him at all. It's just like there's this little monster in your head saying like, no, you do hate him because he's breathing.
Adeel [9:46]: Right. No, I think we all we all understand that. Yeah, that. the multiple yeah the multiple voices yeah although i don't want to call it multiple voices because some they don't have some alarms with psychologists but um but yeah yeah we totally get what you feel um and just to get it just to get uh for the record like any
Grace [10:08]: others do any other family members exhibit any um any uh misophonia as well it sounds like no right that you're really the only one usually not a big family okay no um but there there is a cousin of mine who i have been told um did have experiences when she was younger but not nearly as severe
Adeel [10:29]: Oh, okay. Did you have them earlier before you even realized what it was?
Grace [10:34]: She's my dad's cousin, so she's older than I am. Okay, gotcha. I had been told this by another family member. I've never spoken to her directly about it.
Adeel [10:44]: Yeah, yeah.
Grace [10:45]: I'm not sure if I had just heard from secondhand.
Adeel [10:49]: Gotcha. So then, okay, so then, um, okay, so then, yeah, things are proliferating, uh, it's, yeah, you're not eating, so at, at school then, um, was it starting to seep into your, your school? I mean, it sounds like you're, you're quite doing well, so it probably didn't affect your grades too much, but I'm curious kind of how it started to affect your school life, maybe friends?
Grace [11:08]: Um... It was definitely a rough time for the first year or two, I would say, because I don't I didn't tell anyone in middle school. I don't think like I didn't tell anyone at the school. I my first the first time I told friends, I remember I was having a sleepover with two of them and they were eating pretzels. And I just like. I just broke down. Like I like had my head between my knees. Like I was just like, and they were like, what is happening? And I kind of like, it took me a few minutes to finally get it out and explain to them because I was so afraid of telling people because it's like, people are just going to think I'm crazy. And like, think that this isn't a real thing because I had never heard of it. So I didn't know what was happening. So eventually when I found out the name, I'm like, people aren't even gonna believe this anyway because nobody knows what it is.
Adeel [12:06]: So that's gonna be my next question then is like, when, yeah, when did you, how did you realize it had a name? Because that's not that long ago. So I'm sure the New York Times article may have come out by then.
Grace [12:18]: I think... I think my my sister and my mom had done some research and I think my mom had told me that like this had a name and stuff. I think you have this. So I kind of did kind of was a self diagnosis. Um, and then I went to a psychologist my freshman year of high school, which I was horrified to go to. Like I had the mental health stigma in my head of like, I'm not crazy. I'm fine. Um, so I didn't want to see a psychologist, but when I did, she did confirm.
Adeel [12:57]: Um, she knew about it or she was, he did.
Grace [12:59]: Um, which she was the only. person her my uh current psychiatrist i think were the only people like mental health professionals i had speak spoken to who knew about it before um i had like been a patient of theirs gotcha okay and all right so okay so you knew what it was you start yeah so how did they were they able to help at all um so we did like the basic coping mechanisms um i think i was just i didn't practice them as much as i should have um but like the saying the alphabet backwards um she told me to memorize like the um i had like a favorite episode of teen wolf and just like going through the events of the episode um trying to memorize like the entire like 40 minutes of it.
Adeel [13:57]: So this is not during a trigger. Is this an exercise to do... Well, so I like... It was supposed to be during a trigger.
Grace [14:08]: And you are, like, with coping mechanisms, you are supposed to practice without the trigger and then... apply it during a trigger and I don't think I practiced them enough because it just didn't really work well for me um and I think I got to a point I saw her for like on and off for a few years um and I think I just got to a point where I was like I don't feel like this is helping me anymore and I had a time period where I went through like a dark time period of like wow, nothing can help this. Because there's just no specialty for it or medication specifically for it. So I had a time period where we were trying to find different people and it was very frustrating because I would be going to these people and they would be like, I would have to teach them what it is. Like, how can you help me if I have to teach you what it is? And then I found my current psychiatrist and I've been with her since I was 17.
Adeel [15:07]: Oh, okay. Just going back to those exercises, just for the record also, was the point of those to just kind of distract your mind?
Grace [15:15]: Yeah, it was supposed to like take it away. Yeah.
Adeel [15:19]: Yeah. Okay. All right. But yeah, it didn't work or didn't practice. I mean, I'd never, I hadn't heard that particular. type thing. I was wondering, did that come from maybe another... Was that borrowed maybe from another condition that your psychologist decided to use something like that?
Grace [15:37]: I'm not sure. I'm actually not sure. I just... I think... I was frustrated with them because it was like, she would tell me to use them during school. Like, say if someone was chewing gum during class and I needed to not pay attention to it. I'm like, the point is that I need to pay attention in class. So, like, I don't want to be distracting myself from class because then what's the point? Like, either way, I'm being distracted from what's actually happening.
Adeel [16:02]: Gotcha. Okay. Yeah, interesting. Okay, so yeah, not to dwell on that too much then, but you eventually, yeah, it sounds like you found something when you were 17. Yes. You muddled through somehow, it seems like, school and whatnot. Yeah, what does your current psychologist ask you to do?
Grace [16:25]: So I was actually prescribed antidepressants when I started with her.
Adeel [16:33]: For misophonia?
Grace [16:34]: Or was there... Yeah, it was supposed to kind of be like... I was first prescribed Zoloft. So that's like anxiety and depression. So there's a lot of... um professionals kind of associate me swimming with anxiety um so that was supposed to like combat it a little bit i think it did work for a while i i don't know if it was really more of a placebo effect than it was anything else um but um it just over time just like numbed me completely emotionally um it wasn't really helping my misophonia that much it was just more of like Complete numb.
Adeel [17:17]: Yeah. Wow. Okay. Yeah, I don't have much experience with those medications. But yeah, I've heard, yeah, I can just kind of zap the emotion out. And some people are like, I almost kind of rather have the misophonia if I can just kind of like have those feelings back. I think there's a whole musical about that called Next to Normal, but that's a digression. So, okay, so interesting. So then, so okay, you're 17. So you're also now, I mean, you're looking at colleges. So at some point around that time, you're like, hold on, I'm going to, I'm going to go to school and solve this. So as you were looking at things to pursue, is this when you start to be like, you know, I need to, I need to, I want to pursue this as kind of a career?
Grace [18:05]: Yeah, I was definitely, I think, early high school, I was already thinking about that. That's when I was kind of more on the pharmacy track, I think. And then I had learned more about it, like I said before, and I just didn't really want to be a part of it. So then I found, because neuroscience just really isn't... It's not a prominent program at a lot of schools. So it was kind of hard to find schools, actually, that had neuroscience. And my school, actually, my freshman year was the first year of the neuroscience program.
Adeel [18:41]: Has it traditionally been something you get into in grad school? Do you usually start off as... science and then it's usually a grad thing?
Grace [18:52]: Yes, I think so. Because their grad program was already established.
Adeel [18:55]: Yeah, yeah, yeah. That happens sometimes with new programs. I think they always start off as, even in engineering, they start off as kind of a grad program. If it's popular enough, then they make a whole thing out of it. I was like another digression. But yeah, so and so when you were applying, did you did you mention this? Because I know you have to write essays and all that all that business. But did you start to use that as a way to try to get in?
Grace [19:20]: That was my college essay, actually. OK, OK. And I kind of it was kind of a long metaphor of like this tiny little monster in my head.
Adeel [19:29]: Yeah. Oh, so did you write a whole narrative about it or you just or you're trying to describe it as.
Grace [19:35]: It was just like me describing it.
Adeel [19:37]: Yeah, yeah, yeah. Interesting. Okay. In my opinion, interesting read. I don't know if those things are things that people like to share, but I've been, I never had to write that for engineering school in Canada, but that's, yeah, that's, that's super cool that you, you obviously like organize your thoughts and, and what, what was the reaction? Did you get any feedback about it from, from the school or was it just your acceptance letter?
Grace [20:01]: not no just the acceptance letter i didn't get anything back from the school um i remember because my i took a college english class my senior year when we were writing the essays and um we did like peer review i remember one of my um peers was going over mine and he he really thought that i did a good job explaining something that people had no idea about
Adeel [20:23]: yeah no that's that's great um okay and um and then i guess um yeah maybe let's check back in with your with your family now like you know as you're uh as you went through obviously a bunch of uh so they're obviously somewhat supportive but when they found that they had a name they're taking you around to a bunch of um psychologists like have they um i don't know did their reactions kind of evolve over time as they as they realize that it's it's a real thing
Grace [20:50]: yes very much so um i they definitely once we found out there was a name definitely went further on trying to help me and it still took a while for there to be a complete understanding not that there will never be a complete understanding with someone's habit but just like more of an understanding of how life looks for me and um It's still hard, obviously, but it's the effort that I've seen like is genuinely heartwarming. It makes me very emotional sometimes. Like, for example, going into college, I needed a single dorm because. I can't live with someone in the same room.
Adeel [21:37]: You don't have to explain it to us.
Grace [21:39]: Yeah, like obviously can't do that. So when I applied for it, I had this meeting. It was just me and these people from my college on a Zoom. And they had basically told me like, no, you don't need it. Like just wear noise canceling headphones, blah, blah, blah. and i'm like alone in this call so i'm like okay um so i get off the call i remember i go downstairs my parents i say what they said they're immediately on the phone they're getting on to like the office hours zoom calls for the the college they're like doing everything they can because they know that i would not survive without a storm so like that that's just an example of like
Adeel [22:28]: how much i know that they care about me and wanting me to live a life that isn't struggling every second yeah that makes you emotional to listen to that that's yeah that's great um did you um well okay then once you got into the well actually yeah i mean Let's talk about, let's finish off high school. Did you get any accommodations ever in high school? I did.
Grace [22:53]: So I remember for a while I hadn't said anything. And then towards the end of my freshman year, I went to my guidance counselor and I kind of just like broke down because I was just, I had enough of like... Cause I didn't tell anyone. It's not like I didn't tell my teachers before the accommodations. Like I just like, how do you explain this to someone and have them believe you? So like a couple of my friends knew, so like they knew not to chew gum around me in class, like, but obviously not everyone knew. So it was really hard. I knew exactly where the gum chewers sat in each of my classes. I knew who each one was. When they were absent, those were like the best days. And so I eventually did go to my client's counselor and we did, it was hard to get accommodations because no one had, no one was, but I eventually did get a 504. So I was able to leave class if I needed to, like without having to say anything, like I could just walk out if I was triggered and I would go to the guidance office. And there were a lot of obstacles with that, especially with like testing, standardized testing. I remember like my finals, they have like separate rooms for people with accommodations and the proctors would be eating. And I'm like, I'm literally in this accommodation room because of this problem. But I had later found out, like, much later in high school that my 504, like, basically said I had anxiety. Like, they didn't clearly state my miscellaneous. So I also had a really bad incident in my... my sophomore year i was in class and i only had like eight kids in this class and we were doing a socratic seminar so there's only like eight of us and we're just like in a small circle and i went to the bathroom real quick and i come back and two of my friends say to me like Grace, you're going to want to leave. Our teacher had just given like permission for one of the students to eat their lunch during that time. And it's like, there's only eight of us. We're in the small circle talking. So I said to the teacher, like, listen, I have to go to guidance. And he said to me, do you really have to? And I was like, what? Um, so I did like, I left like in a rage. I was like, so done. I went home. I told my mom, my mom went off on all of my teachers, like sent this five paragraph email to all of them and was like, I don't understand why you can't accommodate my daughter. And she compared it. I thought this was a really good comparison. She compared it to an allergy. Like if a child had a nut allergy in your class, you wouldn't let someone have something with nuts.
Adeel [25:51]: so i don't understand why you're letting this happen because it's a danger to my health too and people don't realize that because it just drives your mental health to the ground yep yep you're right people don't realize that yet um but uh yeah it was we're a lot yeah a lot of us yeah we're in the early innings of this this whole thing and yeah it's just i think you're right it's when yeah because broken as anxiety is kind of your 504 kind of stated this uh you know i was like i kind of nodded along with that i'm like yeah yeah again you know we're just kind of like um you know shoved under the rug or or roped in with something else that uh people have heard about um But, I mean, yeah, that's great that you're at least your mom who's, you have an advocate in your family. Yes, I do. And, you know, the stuff that you're all doing is hopefully will kind of help the next person who comes through.
Grace [26:49]: That's what I was, I'm hoping, is like if someone goes to that guidance office and says something similar, they'll finally know. what to do a little bit better than they had before. My guidance counselor was amazing. He did a great job with accommodating me. If I like left class and I just need to talk to someone, he was always there. And he had later on told me like, I wish that I could have done more for you because I saw the amount of pain that you were in, but he did a great job.
Adeel [27:27]: And those teachers that initially obviously didn't know what was going on and didn't treat it well, did they eventually come around? Did you ever hear about them or talk to them about the misophonia before you left?
Grace [27:41]: Yes. Actually, right after that email was sent out, the teacher that that had happened in their class had responded to my mom. And that's when we found out that... that it wasn't clearly stated because they had said, like, I didn't know that that was what the issue was. Like, we're just told that it's like anxiety and sometimes she has to leave.
Adeel [28:09]: Yeah. Okay. Do you want to, I want to eventually get your call and stuff too, but there's a bunch of here. Do you want to just for the listeners, 504s have come up. Do you want to just kind of briefly describe real quick kind of what they are and how you went about getting one?
Grace [28:24]: So it's accommodations that the school has to apply to. It's kind of a file that you have that is sent out to all of your teachers at the beginning of each year describing what your situation is and what, not going in complete depth, but just what is needed to be done in order to accommodate the issues. that you're facing um in order for you to be able to have an equal shot at an education as everyone else um and this is at the federal level like this is the us ada yes okay okay yep yeah so um but when i went to my guidance counselor for it i think Like, again, some of this time periods are just like completely blocked out from my brain because I think we're just so horrible. But I think my parents had to come in and we had like a meeting with someone at the school who like does all of the 504s. Like they write it and send it out for it to be like made official.
Adeel [29:35]: Gotcha. Okay. Okay. And yeah, this one is for people who might be new. So when I said US ADA, ADA is the American Disabilities Act, I think. And so it's, yeah, it's something at the... um at the national government level that um gives people the right to to get accommodations for for their disabilities and um a lot of well i don't want to say a lot but um at schools uh you can use that to get accommodations through this what's called a 504 plan in some cases um cool did you hear about the um i'm wondering if you heard about that that i don't know if you heard about that recent lawsuit in uh kentucky or tennessee i forget where a high school student has um had sued her school for not providing accommodations um i think i had seen that on your page yeah yeah gotcha um yeah i'm hoping to have the lawyer on at some point to talk about it but uh yeah that case unfortunately got thrown out um at some point um I think for some procedural or jurisdictional reasons. I'm going to have to talk to him again about that. But yeah, I mean, that was a great attempt and, you know, to try to get accommodations. I think she was in a very difficult situation. She was not getting the support that she, you know, we all legally are entitled to. Okay, so I think we've talked enough about high school stuff and a little bit of college. So yeah, how's life been and has this How's the program been? Have you been able to maybe bring up Misophonia at all? Make any networking connections? I'm curious how things are going now.
Grace [31:22]: Um, as far as Miss Phonia, the only thing that nothing really with the program I've been able to do yet, cause it's just, I've only been at like intro level stuff. Um, so like nothing, I've really not, haven't been able to do much, but before during the pandemic, um, before I got into college, I had reached out to, I looked up, um, who had got federal funding for Miss Phonia research. And, um, there was someone at Duke who had, so I reached out to her. um just asked if there was like any way I couldn't be involved virtually or anything um and she did get back to me she said that because of the pandemic they can't have like anyone else on their project at that point but I guess I kind of did get my name at least out there a little bit for um Esponia but I just on more of a personal level I try to spread awareness um like I Like I said, early high school, I used to be so afraid to say something, but you can meet someone on the street now and be like, yeah, I have this thing. Because I just, people don't talk about it enough, like nearly enough. And I had... I've shared stuff on social media before and I genuinely like don't want it to be this thing where people feel bad for me or feel like they can't like breathe or eat around me. It's more of a, someone else has this. Like I had people reach out to me after I posted about it and say like, I didn't know this had a name and I didn't know that this was a real thing. Like my family has thought that I've been crazy this entire time.
Adeel [33:04]: Right.
Grace [33:05]: And like, that's what, is important to me, is being able to get that out there.
Adeel [33:11]: Yeah, I agree with you. I've thought of, you know, many times about, you know, what's, you know, what are my goals for this podcast? And it's actually more, it's less, it's about awareness, but it's awareness more for finding other people who might not know it has a name and are just kind of suffering in silence. Yeah, because I think... um, just knowing sometimes when you're in a trigger in a situation, like sometimes just knowing that other people have it or that you can kind of, you know, reach out to someone via text is, is can make a big difference.
Grace [33:41]: Right.
Adeel [33:42]: Um, and, uh, yeah, that's great. And at your school, have you, I don't know if you've, uh, you're like, uh, uh, past gifts, Natalie, shout out to Natalie started a group at UCLA when she was a student there, uh, misophonia support group. Have you thought about maybe doing something like that at, at where you go to school?
Grace [33:59]: That's a great idea, actually. I hadn't really thought about that because I think in my head I've always been like, it's so rare, but it's not.
Adeel [34:10]: Yeah, I mean, I think a few people, but I think people came because they heard about it because it was basically, you know, every every university has like student chess club or whatever kind of student groups. And there's always a directory. And then there's maybe a day when they all kind of like have booths or whatever. And so that those are kind of opportunities that you can kind of like get the name out there. And and so that'd be an interesting idea. to try out yeah no it's very cool and and and so so you are now i guess more open about it have you met sounds like you have met more people that have uh that have misophonia including strangers i assume um and so have you building a little network of misophones local um it's just like not really not that many people actually it's just more of
Grace [35:00]: People that I went to high school with who, when I posted after, had reached out to me. Or people that were younger than me who were still in high school.
Adeel [35:13]: At the high school that you went to.
Grace [35:15]: Yes. And I made it clear to them, like, listen, someone knows about this at our high school. Because I went through it and you can get the help that I got.
Adeel [35:26]: Yeah, that's great. That's powerful. Yeah, because you didn't have that. So, I mean, imagine if someone had reached down to you and helped you out. That would have been huge. So that's, yeah, that's a huge impact. Yeah, so I guess, I mean, and so your coping mechanisms then now that you're, you know, you're in college there, is it still kind of the typical? you know, getting out of situations or wearing earphones or is there anything you're, I assume you're not still reciting the alphabet backwards. What are some of the things that have been effective for you?
Grace [36:03]: I'm a very flight person. I definitely walk away most of the time. When it comes to like, lectures and stuff like that that's when i have a hard time um are you a front of the room or back of the room person I'm a back-of-the-room person. In high school, I was a front-of-the-room person.
Adeel [36:25]: Or near-the-door person.
Grace [36:26]: I'm, like... I've been back-of-the-room. And I don't really know what's related to my misophonia. I think that's just, like, my preferred spot. But in high school, I was front-of-the-room because of my misophonia. I like to... I don't want to see anything. Yeah, yeah, yeah. But I think it also helps being the back-of-the-room in college because, like... There are, I can like still pay attention to what's going on in class, but there are so many little distractions, like someone playing solitaire in front of me. Am I gonna focus on that instead of someone cheating? And not that it blocks it out at all, but like, it just, I think high school is such a small area that you feel trapped. And college, I think also knowing that I could walk out anytime and nobody would care. And it's also kind of comforting that I have that freedom and no one would ask anything. No one would judge me for it.
Adeel [37:25]: No, no one's taking attendance.
Grace [37:27]: Yeah.
Adeel [37:27]: Go outside, get some fresh air anytime you want.
Grace [37:30]: Right.
Adeel [37:30]: Yeah. Very cool. Have you thought about kind of like so, you know, you're in college. Are you looking at kind of like following the research that's happening? I'm sure you're familiar with the Dr. Kumar studies and what his group is doing. Are you thinking about what you would want to study or what you'd want to research?
Grace [37:49]: So I actually did, I took a research articles class two semesters ago and we had our final presentation, we had to pick an article and I actually chose that article. about the mirror neurons yeah yeah yes um and not that i'll be completely honest with you i it's so beyond my understanding still um i it's very interesting to me though and it was it's amazing to hear that there's something like a step being made um because before that it was like no one knows anything
Adeel [38:31]: It wasn't a lot of interest. Did you hear the Merceder-Franian interview that I did? Because she was one of the lead authors on that paper.
Grace [38:40]: Oh, no, I didn't.
Adeel [38:42]: Oh, yeah, you should listen to that. And if you want me to connect you with that group, I can do that maybe by email or something. later but uh yeah i had uh merceder fanion on the show sometime last year right after that paper came out so yeah it's a good like hour hour and a half getting into it kind of kind of not getting you know too into the weeds but i know she explained it really well and talked about like some maybe some future directions which so it's a fascinating episode you should definitely i think listen to yeah i will definitely listen to it cool okay yeah so you okay so you did that um uh a summary of of that paper um yeah well yeah did you get any ideas from that that you of things that you know maybe resonated with you that you want to that you want to see studied further so i actually i've had a little bit of a like major crisis in the past few months um just like
Grace [39:39]: I took very, very difficult classes that I was like, I don't know if this can be for me, but it's so frustrating because I want to make an impact so badly. So I kind of strayed further from the idea of research and I'm more looking towards, because I wanted to go to med school, but... I also realized that that might just might not be for me. I'm looking more towards PA school now. Cause I do, I really enjoy like direct patient contact. Like I really do enjoy that aspect of things. And I think research is just too behind the scenes for me. But it's, I think it's gonna be more for me, more of following it closely and me being able to understand. more then it will be more of me being involved in it which was like a really hard thing for me to kind of get used to I guess just the idea of me not being directly involved I just don't think I would enjoy it but I do want to have that impact so it is kind of frustrating but I just don't think that the research would be for me
Adeel [40:52]: Hey, I think it's early days. I think there's many ways to help. And so, yeah, I think just the fact that you're kind of thinking about it and we're kind of revising your plan. I think that's and it's not like you're young. It's not like what you do next year or two years is going to be you're going to be stuck doing that forever. You're going to meet new people. You're going to be exposed to new ideas. Um, there'll be new research coming out. So, um, yeah, well, I wouldn't, uh, worry too much about that. And I know you can make a big impact, whatever, whatever you do. So, um, yeah, that's, that's, that's awesome. Um, yeah, yeah. Well, whatever you do, I hope you at least to stay in the, in the misophonia track.
Grace [41:32]: Yeah, I definitely will.
Adeel [41:33]: If possible, but you know, whatever you want to do on that. Um, cool. Okay. And, um, oh yeah, we're getting, yeah, I'm getting, you know, closer to an hour ish. Um, Yeah, we talked about some of your coping mechanisms. I guess, well, how has, well, I guess, how's the, did we talk about how the, we talked about high school, but how's the college been for accommodations? You know, we talked a little bit, obviously, about lectures. You can, you know, run out of there whenever you want. But have you needed any accommodations for like midterms or exams, things like that?
Grace [42:08]: um i so because my freshman year was all online like i didn't really need oh yeah any accommodations so this past year was kind of me getting into the hang of things like just trying to figure out like what accommodations i might need um i didn't i found that i didn't really need um many but there was like one exam i remember i was in a lecture hall and it was that time of year where everyone's sniffling um and i was I don't know if I would have done better on the test if it weren't for that. But that was when I kind of realized like, oh, I really should try to find accommodations. But by the time, like that was like towards the end of this past semester. So by the time that I had realized that it was just kind of like too late to do it for that semester. So, but I'm definitely planning on doing something for the fall to see if I can get like separate room accommodation or something like that. And I think college is much more flexible with like you being more specific about it. Like what your specific needs are. I've heard that they're good with like if you need to be completely alone, you can be completely alone. Because high school was just like you're thrown into the room with everyone who has accommodations.
Adeel [43:27]: yeah it should be more flexible and there's just a lot more rooms available right yeah but i think they've been yeah i think people have heard a lot of different things they get people from everywhere yeah uh okay interesting um yeah hopefully hopefully that all that all works out um and going maybe like going back to your family a little bit so your sounds like your mom's kind of been in a big advocate your dad was kind of your biggest trigger how is how is kind of like how's he been dealing with all this um it's it's kind of hard to tell um
Grace [44:05]: Because I think when it comes to Miss Phony, everyone's kind of focused on how I'm feeling. In the beginning, I don't think it was as much, nearly as much like that. It was kind of like, oh, this is annoying for everyone. But now it's definitely more about me. So I don't really hear much about how everyone else deals with it because I do know that it is a huge thing. And for a very long time, I did have like, very dark thoughts of like wow this would be so much easier like this house would be so much easier if i weren't here because there wouldn't they wouldn't have to like worry about literally breathing um okay okay and so that was just like that that was coming from a sense of guilt yes yeah there's been a lot of guilt because um It's just like, I forgot, I have read this article recently and it was very, very well written about, it was written by some of these phonians. One of the lines was something like, how do you hate your father for breathing? And it was just like that one hit like it just the way she worded it like really hit me because it is that feeling of like, why do I hate someone for being like, for making a noise? So I know that it has definitely affected him. And as I got older, I really tried to, you know, I try to make it clear that that's my Misophonia and it's not me.
Adeel [45:49]: Yeah, I'm wondering if he's... Misophonia is interesting. Well, I don't know if it's interesting, but there's many layers to it. There's obviously the Misophonia, then there's the guilt on your side, the guilt maybe on his side, and then there's all these corollaries. Do you get a sense for his easy able to kind of like understand that's not really in our control and that's not a personal thing.
Grace [46:18]: Definitely. Um, that was definitely a gradual.
Adeel [46:22]: Yeah.
Grace [46:23]: Um, but now definitely. Yes. Um, it is like very understood that this is something out of my control.
Adeel [46:31]: Yeah. Yeah. Yeah. Um, No, very cool. Yeah, well, Grace, yeah, this is super interesting. Like you said, it's exciting that you're pursuing this, and I hope more people pursue this or enter the field of neuroscience or anything neuroscience-adjacent. Yeah, anything else you want to share, whether it's tips or any stories you've had in the past of successes or failures?
Grace [47:00]: um one success that i think i wanted to share was um at the end of high school i was given an award from my county it was like the youth spirit of success um and it's awarded to kids who are able to excel in school while facing a medical or physical difficulty and i had been nominated by um someone at my school i'm not sure who it was i think i know who it was but like i'm not told um and so that was a huge thing for me because looking back on high school like It was hell. It was definitely hell with me. Every day was, there was a different noise that made it harder for me to focus in class. And it was also just like embarrassing when you walk out, like there'll be days where I was crying and it was just like, I would just be walking out and I'm like, no one knows why I'm walking out and just crying for like no reason.
Adeel [48:13]: Would they come up and at least try to support you or was it just like everyone's doing their own thing and you're standing there crying?
Grace [48:19]: It was so in school once I got the accommodation was like if I started to get upset like I would leave. So the people in the guidance office like started to know me and not even i don't even know if all of them necessarily knew what my issue was but it was kind they had an understanding um like when i came into the office and if i was like very very upset i would talk to someone um i also at like the end of high school started speaking with the school psychologist too um she was very helpful like if i could just go to her when i was like genuinely like physically upset um but being I think it was just a very, very different experience being acknowledged for it. Because it's something so invisible. And just, like, being told, like, hey, you did a good job getting through this.
Adeel [49:26]: Yeah, it must have been overwhelmingly a good feeling.
Grace [49:30]: It was. Because I never thought that... anyone would kind of acknowledge it besides like people who were close to me and knew everything um but getting it from an outside perspective was like wow this is um and i'm not like i really don't mean to like toot my own horn but it just like you deserve it yeah like i was top 10 in my class like i did very well academically but that took a lot like a lot of work because of what was going on in my head during that time that no one else saw yeah yeah people don't yeah people don't see what uh well yeah what this does and how we deal with it that's that's great that you were and well-deserved uh uh acknowledgement did that award mention misophonia or was it just in general no it was just a general because like other kids from other school districts also received it so it was just kind of like who won it and what school they were at but um but it was um it was really good to to get that Because I just think from an outside perspective, it's just kind of like, why is she crying?
Adeel [50:54]: Yeah.
Grace [50:55]: And even like, that was another.
Adeel [51:00]: Part of what comes with that is on top of the guilt is like maybe some shame. Yes. Do you want to maybe briefly talk about that? I wanted to end on a positive note, but it's good to at least talk about this stuff too.
Grace [51:14]: Yeah, I, there's, a lot of like school there was shame just because like it is embarrassing for like obviously especially people don't know because it's like they just they could assume anything but i remember also like going out to eat um the amount of shame i had there because there were for a few years i wouldn't wear headphones but it's like i would still cry like in restaurants like i would get very upset and and also like wearing the headphones um sometimes when a waiter or waitress would come up i wouldn't hear them or like i thought from an outsider's perspective i just like i just looked like this like annoying teenage girl who was like ignoring everyone but in reality like i just didn't want to hear anything um so like that that was definitely that carried a lot of shame and even like i was raised catholic and going to church too was just because it's just so quiet yeah that you hear everything and i remember there was just one easter mass a few years ago where there was a family sitting in front of us and they're like toddler was eating cheerios and i I sat through like the entire hour. I was bawling my eyes out the entire time, but I sat there and like, that was like, I shouldn't have to sit there and struggle through it. But it also was like a certain amount of pride that I was able to do it, but still shame because I was like sitting in a church bawling my eyes out in an Easter mass.
Adeel [52:48]: Yeah, the layers of misophonia feelings all at once.
Grace [52:51]: Yes.
Adeel [52:53]: That scene just kind of sums up misophonia. Yes. Wow. Well, sorry I had to deal with that. But yeah, it's quite a complex situation. Yes. Yeah. Well, yeah. And obviously being raised Catholic and guilt is kind of a stress pillar of Catholicism. Yeah. Super interesting. I'm sure a lot of people will relate to that and everything we've heard. Um, maybe not as much on the research side, which is exciting. I think hopefully you could kind of trailblaze a little bit. Um, and I, yeah, I'd love to maybe connect you with some, some other neuroscientists that I know that are currently in the field. Um, Yeah, but yeah, this is great. Any last words that you want to share before we sign off?
Grace [53:40]: I guess just in general, like especially if you're young and experiencing this, like I promise it gets better because I think a lot of, I for a very long time thought there's literally no way it's going to get better, but it does. And I think especially with the awareness that we're spreading, I think it will definitely get better.
Adeel [54:01]: Yeah, that's an important message that I want to share and people who come on want to share is that it could seem hopeless, especially as the number of triggers really increases. It could seem like if you draw the line, it could seem like, oh my gosh, I'm going to get overwhelmed by the time I'm X age. But yeah, it gets better for various reasons. At some point, you'll find people who can kind of be allies and support you and or you're older, you have more agency. like in college to kind of like move around and or later when you can, you know, have your own place. So, yeah, there's no cure. There probably won't be one for a while, but I think, you know, you'll hopefully get a sense of control back. Yeah, important message to share. Well, yeah, Grace, thanks again for coming on.
Grace [54:52]: Thank you for having me.
Adeel [54:54]: Thank you again, Grace, for coming on to help raise awareness, sharing your story, and I wish you the best in trying to solve this condition. If you liked this episode, don't forget to leave a quick review or rating by hitting the five stars wherever you listen to this show. You can hit me up by email at hellomissiphoneypodcast.com or go to the website, missiphoneypodcast.com. It's even easier to send a message on Instagram or Facebook at Missafonia Podcast or a DM on Twitter at Missafonia Show. Support the show by visiting the Patreon at patreon.com slash Missafonia Podcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [55:47]: Thank you.