Annie W. - A journey of resilience through Misophonia struggles
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 6, Episode 4. My name is Adeel Ahmad, and I have Misophonia. This week's interview is with Annie. Like my previous guest, Grace, Annie is also a student of neuroscience who entered the field to make an impact on Misophonia, inspired by her own experiences. And her experiences have been unrelenting, but I was constantly struck by her resilience. It is inspiring. As you'll hear, it seems like every time her life and misophonia take a small step forward, something quickly puts her back two steps. We talk about chaos in the home, negative responses from family, step-family, and classmates at school, deep internalized shame, physiologically shutting down for months at a time. And yet she braved through all this, usually completely on her own, but also occasionally found allies when she needed them the most. Like I said, I was inspired and I think you will be too. Remember, you can reach me by email at hello at missafoniapodcast.com. If you want to talk about the show, hit me up on Instagram or Facebook at Missafonia Podcast or Twitter at Missafonia Show. Thanks again for the support of Patreon supporters. If you feel like contributing financially, you can read all about the different levels at patreon.com slash misophonia podcast. And of course, my favorite way to get the word out is actually just to leave a quick review or rating wherever you listen to the show. It helps visibility for the podcast. All right, here's my conversation with Annie. Annie, welcome to the podcast. Good to have you here.
Annie [1:46]: Hi, yeah, thank you for having me. so yeah do you want to let us know just kind of about where you where you live what you do um yeah so i actually just graduated college uh so i'm living with family for a bit right now trying to figure out next steps um where i'm going to work and all of that cool uh what did you do in college if i may ask um so i studied psychology and neuroscience
Adeel [2:12]: and right now i'm looking for yeah i'm actually hoping to um eventually get into research around misophonia at some point very cool and did you enter um college doing psych and neuroscience for the purpose of um misophonia or was it something you just kind of decided to do more and more as you were learning about the program
Annie [2:35]: Yeah, it's actually when I first came in, I was really into literature and I wanted to do something with that. But around my sophomore year, I started to have an especially difficult time with my misophonia. And I had to take a year off because of that. And I think that just really changed my perspective. And I realized that was something I really wanted to dig deeper into.
Adeel [3:00]: Yeah. Was it just the usual kind of like student life and lectures that were causing more problems than usual?
Annie [3:10]: It's like really hard to describe because I think based on what I've read in other people's experiences and heard throughout this podcast, it was like my misophonia was kind of put on hold for a little while when I was in college. for some reason i think it started to manifest a lot it's like social anxiety and severe depression and all of these other episodes that just made it super difficult for student life but then towards the end once all of these issues started to like culminate it was like the misophonia came back with as much of a heavy force as it did when i first got it and i was just reminded i was like oh my god yeah i've had this and i think that's where all these surrounding problems have come from so um it just seemed to blend into a lot of things
Adeel [4:02]: Wow. That's an interesting, uh, interesting little journey there. Um, okay. Hopefully, well, I'm glad he graduated and, uh, and are still, um, yeah, he made it through and, uh, are looking at helping with research. Well then, um, maybe we should just kind of, yeah, head back to the beginning and then we can come back to this, um, um, as, as the narrative goes. But, um, when, you know, like, you know, what was the, what were things like when you, when you first started noticing misophonia?
Annie [4:31]: It's funny because I have like a crystal clear vision of when I think I had my first trigger. It was like I could feel something in my brain snap. So it was around when I was 11, I think. issues my mom uh started dating this guy and he had three kids um and we were all sitting down together for dinner one night at his house and uh on the drive there my mom had told us like oh uh i think i'm thinking of marrying this guy like what do you guys all think of him and me and my siblings were just like oh no he's so mean like his kids bully us all the time like we really don't like this guy don't do it i don't know it was just like um when we got there was like this feeling of hopelessness and so we were just sitting at the dinner table And it was like something clicked in my brain and I looked around and I was like, oh my God, why are they chewing like that? Like, I just feel so helpless. And ever since then, like my stepdad, funnily enough, was like my biggest trigger. And I've seen a lot on this podcast that people's dads are usually like their first triggers. For sure. It was like, yeah, his chewing, coughing, all that. But chewing across the board was like any lip smacking was like a huge trigger.
Adeel [5:54]: And did it stay as your stepdad as being your only trigger? Or you said actually everyone at the table is kind of driving you crazy, right?
Annie [6:03]: Yeah, pretty much. But it was interesting because it was mostly like the older male figures in my life were among the worst. It's like my stepdad, my grandpa, my dad. And it was even like if men's voices were too deep, like that really set me off as a kid.
Adeel [6:24]: but your your biological dad was not a trigger before that that that evening right no not that not before then yeah interesting okay so you're 11 all right so kind of middle school yeah how did things well first of all like how did you um how did you react and have that go over because obviously there's a lot of flux in your life around that point um wow yeah what were your reactions slash coping methods if you had any
Annie [6:50]: Yeah, it was just, I just remember it was such an overwhelming like bodily feeling and also it's hard to describe but it was like a mix of like this emotional pounding headache. Like just every negative feeling took a physical force and I was just, it just made me cry a lot. It's just like I was in some sort of pain and I was crying.
Adeel [7:15]: Were you able to leave situations or?
Annie [7:20]: um no that was the thing family dinners were like a bit of a ceremonial obligation my family was very obsessed with the image so it was just like doesn't matter you know how everybody's feeling like we just want everybody at the table sort of thing um and for a while nobody knew what it was this was around uh I think it was 2011 when I started having these symptoms. And so everybody in the family had a theory like, oh, it's for attention or it's like OCD or anxiety. Right. Yeah. They just thought if I was exposed to it at the table, like that would just help me get over it.
Adeel [8:05]: God. Okay. And yeah, not unheard of, unfortunately. But did they at any point... How did it progress? Did it get worse? Did at any point they realize we need to maybe get some external help for this?
Annie [8:21]: So for about like, I think it was a year and a half. It just kind of stayed at that level, like that peak sort of painful feeling every time. It was really bad at school, too, because like kids would always be chewing gum. I, like, for some reason had some learned helplessness to not ask to leave or go to the bathroom or tell anyone what was going on. I think I was just, like, internalized. Oh, I'm being weird. I'm going to try to get over this. But I couldn't. But I was super lucky because... My mom ran into some post online that described what misophonia actually was. And then when she learned about this, and we talked about it a bit more, she tried to look up any treatments in the area that could help. I think we found something for deep brain stimulation or something. It was like very new at the time. It was the only thing that was talking about misophonia for miles around us. So she took me there and they were like half studying my brain, half doing this treatment where they would send little electrical signals into my brain, like via these notes they would attach to my head and they would play some like calming ocean music. and then they gave me the little CD with the ocean waves that they played, and I would just listen to that to go to sleep, and that made it a little better for a couple more years, and then it came back, and then it went again, and now that I've graduated college, it's actually come back with a force again, so very interesting disorder, for sure.
Adeel [10:03]: Yeah, for those couple years after the CD wasn't helping you in
Annie [10:09]: every situation or just trying to help you kind of go to sleep and not think about it i'm just curious kind of like how much it helped yeah um so from when i was like 13 to 14 and a half ish uh after i'd gotten that treatment it was like it reduced the severity of my reaction to the triggers for a little bit it was like even like at the dinner table and stuff yeah so it brought it down like a 100 pain to about 75 and you know i still had to wear earplugs sitting at the dinner table but at least at that point i was able to look up at people and and talk with the family instead of because you know i had the visual thing too i couldn't stand so i was keeping my head down but um Yeah, after that, it made it like slightly better, but it didn't last for long. And actually, now that we talk about it, I'm very curious as to what they were actually doing with the stimulating part, like what parts of the brain they were looking at, or I wish I could find the study exactly.
Adeel [11:14]: Yeah, that's interesting. I don't know if I've really heard of that. So that's interesting, especially, I mean, if it can help you for a couple of years, that's actually a reasonable amount of time. obviously not good that it's come back with a vengeance but uh yeah that's at least i mean that's that's something that's interesting um i'd be surprised surprising that it would have helped in every situation but uh so yeah that's that's great so did um was like talk therapy or cbt that kind of stuff was never part of your um experience in therapy was it was mainly it's mainly been this
Annie [11:50]: Oh, yeah, that was like the major thing. And I think what's been the most damaging around me and my misophonia is just this internalized belief that I don't know why, but for some reason or another, I didn't want to believe I had it. I think it was just so overwhelming. And on top of the fact that it's like not very well known and there's no cure for it, I just... I tried to push it out of my brain. And on top of all that, I started having like severe anxiety in school and like really hard depressive episodes. So those were like the reasons I would go into therapy and talk about. And then and then. maybe on the way into the therapist's office somebody sniffling would drive me nuts and i'd walk in and be like oh my gosh i remember i have this disorder and it really sucks and then she'd be like that sounds yeah this sounds like it's reaching into everything and i'm like yeah i don't know why i have this blindness to it but um i've gotten over it the past few years but yeah before then it was like i don't know why i didn't notice it and did those episodes go back uh to high school too the ones that like the intense episodes of these other conditions Yeah, so it was kind of like in college, but in reverse. It was like the first 10 years of high school, people's gum chewing was so overwhelming. I would just be in tears throughout each class and just like in a heightened state of arousal. Um, and then for the next two years, it was like, I became so incredibly socially anxious and it was like, my brain was overthinking about what everyone was thinking of me that, um, chewing wouldn't bother me so much, but the thing that always permeated to the surface every time was usually like, uh, man chewing or like, uh, older guys. I don't know why that was always like the strongest trigger for me and always, um, was at the forefront of bothering me but yeah everything else kind of uh went to the back burner during those like i don't know what they were lows or yeah what did um what did other like kids at school do or say when they if they saw you um react the way you were reacting um so in middle school i was in a really small school and uh kids were always seeing me crying in class and for some of them it was like they um they just passed off as oh she's like really weird and we're just gonna avoid that and some kids were like i was bullied like quite a bit for it um from other kids uh especially because i again with the internalized like i don't want to even admit i have this like when people would ask i just wouldn't talk about it or make up some excuse that was just weirder And then, yes, they would be like... It's ridiculous when I think about it, but... And then there were girls who were like, oh my gosh, are you okay? Like, what's going on? And what surprises me the most was that teachers didn't really do anything when they would see it.
Adeel [15:10]: Yeah, I was going to ask you if there was any, yeah, what was the teacher reaction? Was there any accommodation attempts at all?
Annie [15:17]: Yeah, there was one. They told me, well, one of them would just stop in the middle of the lecture and turn to me and be like, do you need to go to the restroom? Like, do you need to be excused? And then like cue the whole class looking at me like streaming.
Adeel [15:35]: Yeah, I can see their necks moving right now. Right.
Annie [15:39]: yeah so i i just didn't want to turn to help after that because again nobody knew what was going on and i didn't i want to articulate it or know how to articulate for a long time and i think i was just so ashamed uh and then people picked up on that shame and they just didn't know what to do with it um and then in high school i kind of adapted in that i always tried to um sit in the back and stay out of everybody's way i just i was like trying to be invisible um it always helps to be in the back corner of anything so that i don't because whenever but somebody's behind me it drives me nuts yeah although right there's always that debate but then um if you're at the back you're you're suddenly able to see everybody's you know
Adeel [16:27]: chewing and and whatnot if they're if they've got gum so that visual triggers can sometimes get you yeah but and you were um but you were kind of reacting the same way like just internalizing and staying in class but then um reacting emotionally at the back of the class in high school? Yeah, but still, like, just tear-streaming, and, um... And the same bullying, or ignoring, or... from other people?
Annie [16:58]: Thankfully, in high school, I was in a bigger school, um, so I was able to be just more invisible, and thankfully, there's no bullying. It was just like, uh, okay, I'm gonna leave her alone, because... Okay, yeah, everyone backs away.
Adeel [17:13]: Yeah. Yeah. Okay. Uh, interesting. Okay. And, um, and you had started to go, go to there. Was any of the social anxiety related? I mean, thinking back, maybe related to like how you thought maybe people were perceiving you in this situation, these types of situations. Yeah.
Annie [17:32]: Definitely. When I trace back all these things, a lot of it seems to be linked with misophonia because I think at least on a subconscious level, too, and mixed with all of the shame because it was very hard for my family to accept that I had this disorder. And this was hard for me to accept. And then, you know, I would. uh have this horrible physiological reaction um after listening to people perform this mundane act and i just it was like anytime i looked at people like they could just do the simplest thing and it would hurt me so bad and so maybe that's why i just i started to have a habit of like keeping my head down and not talking to people and um just shutting everyone off basically and another thing was like uh by the time summer would come after these school years i would just crash for three months i i wouldn't leave the room i wouldn't um take care of my hygiene it was just like a really heavy depression and i think that was all set in by the misophonia because it's like a year of sitting in place and like uh these school settings and really not being able to move and just um having to go through these stressful bodily responses and yeah yeah i was like kind of developing a learned helplessness to it like i'm in a stressful situation and i can't escape and i'm teaching myself i can't escape and i won't even admit to myself that i have a problem and then so i i guess by the end of the school year my body was like oh my god it's been too much i need to yeah wow yeah i never thought of it that way but uh yeah
Adeel [19:12]: Yeah, it could have been just a reaction, just nine months of exhaustion, basically, and your body just not knowing what to do and just shutting down. Interesting. And, okay, but what about, like, I mean, did you have a group of friends that you could maybe trust or be confidants with, or was it kind of tough to do that?
Annie [19:39]: Yeah, it was kind of tough for a long time because of that internalized shame. And I think it was also stemming from, like, when I was home and anytime my family wanted to do something, if someone was chewing, I would say, hey, can you please stop chewing? Like, I want to be here and have a good time, but you kind of... ruined life for me and then and then they would get like very angry with me and usually yeah the response was just you should leave and then so I internalized this belief like maybe I just shouldn't tell people because it is ridiculous and I can't explain it and you know, maybe I should just excuse myself. But when I turned 16, I actually became very close friends with this girl. And she was the first person who kind of pulled me aside. And she's like, no, really tell me what's wrong. Like, don't just walk away. And then I was like, okay, well, your gum chewing kind of bothers me. And she's like, look, I'll spit it out. And she didn't. She's like, no, like, please make a point to always tell that to me because want you around and then after that i just kind of opened up to her and that was the first time i was like wow how did that happen it was it was really confusing at first and yeah um made me realize i'd operated from a point of confusion for a very long time but when i had someone who said that and not only just in that instance but she really pressed me about it every time she's like she's almost kind of frustrated she's like come on yeah yeah it was like i was like oh wow this is like what a friendship is you know what i see in the movies um like it was cool um she was really kind and and slowly but surely over the years i started looking more at it and The biggest thing is asking strangers, especially when I'm on planes and stuff, because I always had to go on airplanes going back and forth from college to home. And somehow I always end up next to someone chewing gum. It just takes everything in me to ask them. But I do, or most of the time I do, if I'm lucky enough to be sitting right next to them instead of them being like a couple of seats in front or behind and Every time I've asked, they said yes. It was good.
Adeel [22:03]: Oh, that's good. Okay. And what about other coping mechanisms, like noise cancelling? Do you use any of the tools like that?
Annie [22:15]: Yeah, so ever since I was 11 and this first came out, I've pretty much always had an iPod on me and just always had headphones in, so I was always playing music. and that helped a lot but it frustrated people sometimes because I would be playing it when we were out eating or in public events and I just wouldn't be very present.
Adeel [22:44]: Right. Do you have a lot of siblings? When your mom married your stepfather, did that expand the family? I forget how many siblings you said you have.
Annie [22:55]: Yeah, so there were three step-siblings, and then I had two blood siblings, and then one half-sibling. So it was like a big family. Oh, yeah.
Adeel [23:04]: A little Brady Bunch action there. How was everyone's reaction? Did you feel, well, let me start by like closeness with your family members. Did you feel like this was like really a barrier to kind of like being included in kind of as part of the family or?
Annie [23:26]: yeah um i i think it did and i i i won't get too much into it because i feel like i'm rambling already but no no i'm a big i'm into rambling but but but i don't mean to force you to say anything you don't want to say no no worries at all um it To put it, like summarize it. Yeah, yeah. Feel free to summarize. It was very turbulent. We didn't mix well, like my family and the step family. there was just a lot of chaos and frustration and anger in the home. Like everybody was hostile to each other in one way or another. So on top of that element. Oh, I see.
Adeel [24:07]: So there's a lot of other stuff going on. Okay. Yeah.
Annie [24:10]: Yeah. It was just a lot of chaos, but in the moments where there was some sort of harmony, um, I was still on edge because of the misophonic elements and, you know, the smallest thing could tip someone off. Everybody was kind of always on eggshells at times.
Adeel [24:28]: Yep. Is that, is that family still together in the same way or?
Annie [24:34]: No.
Adeel [24:34]: Okay. Okay. All right. Interesting. Okay. Well, that takes us to college. You, okay. So, so you, you went to college away from home as part of the, one of those reasons to get away. Yeah. To get a change of scenery, let's put it that way. yeah i was a couple states away yeah yeah yeah okay and so uh was there any apprehension like how did that experience go any apprehension of kind of like what it's going to be what is it going to be like you know
Annie [25:08]: Yeah, and here's where that strange blind spot I had for misophonia came in, because I just assumed once I went off to college, I was going to be cured. I was going to have no problems at all. There was nothing wrong with me. It was all just the chaos in the family. But I get to college, and... but the social anxiety was really bad, and I was in a... I had a roommate, we had just, like, a single room with two beds, and... Oh, no. Yeah, that was driving me crazy towards the end, and then I would get really depressed and ashamed for it, and... Yeah, that didn't work out. But thankfully, after that semester, I was able to have a room to myself because college was really accommodating for disabilities, which I'm really grateful for. And then as for classes, too, I am so lucky to say that there were only two classes in my whole time there that I had some misophonic incidences in. um which only further increased my blindness to the disorder but and when they did come out it was only mildly aggravating too so again it was kind of dormant for a while there but um one thing i remember really vividly was when I joined, I joined the crew team there and in the mornings they would all eat breakfast together.
Adeel [26:41]: The crew team being like a sport?
Annie [26:45]: yeah like the rowing team for the college oh okay gotcha yep um and they the thing with that specific sports team was they would always eat breakfast together because they had practice super early and it was a good bonding time to the team so i really made an effort to uh sit with them because i wanted to have that bond but when i would do it i had this um extreme anxiety. Maybe it was a panic attack. It was like every time I... The only things I could hear when I sat down with them were my heartbeat and my breathing. And I just remember on top of that, freaking out so much. Like, what if someone tries to talk to me? I'm not going to hear it or anything. And I don't know if that was my body preparing for the misophony or just... totally shutting me out, or if it was mixed with... Some nervous system issues, yeah. Yeah, exactly. So it's just hyper regulated for a really long time, and... Well, how did you get through that?
Adeel [27:54]: Was that literally like, you just decided to deal with that every day, every morning?
Annie [27:59]: Yeah, and I really have no idea why I did it. I remember just being... in that team and during the practices but especially during that time at breakfast i was just so anxious i i could barely look up at people and into their eyes and i was just so nervous and afraid of everyone all the time i'm pretty sure i didn't speak a word to anyone for like the first few months um but then uh we went on the spring break trip together and i really opened up and it was like i had close to no issues after that. And I still have that thing where my nervous system just really freaks out when I'm eating with groups of people. And it almost surpasses the misophonic trigger reactions. It's just like constant arousal.
Adeel [28:51]: Okay, so you were having all these issues, you went on a spring break trip, and you opened up, and then things were fine after? How did that go? You started to tell people, and then they were, like your 16-year-old friend, they were very accommodating, and then things were okay?
Annie [29:16]: No, it was interesting, though, because when they described me during that time, like how they saw me, they said I just looked very proper when I would eat. I would sit stiff straight up and tear the food up slowly to my mouth. They just thought I was very proper or something. But I told them, I said I was just extremely nervous. And most of them I still actually haven't opened up to about the misophonia. few really close people who have been more than accommodating but by opening up I think it's just by the end of the week we have like this little fun tradition where we do a skit and What I thought was an unlucky stroke of fate was that I was designated to lead the skit for my group because everyone did nose goes and deciding who reads the script. So I went up and read it and then everyone... Everyone just sort of laughed and then it was like for the first time I like really looked up and looked in their eyes and it was like I was allowed to let that wall come down a bit and just realize like, oh, I don't have to be afraid of these people anymore.
Adeel [30:36]: Wow. And this skit was not related to Miss Pointy at all.
Annie [30:40]: This was just... No, I was just making fun of her.
Adeel [30:43]: You were just having fun. You were making fun of what, sorry?
Annie [30:46]: My coach.
Adeel [30:48]: Okay. Yeah, cool. Okay. Yeah, this sounds amazing for everyone except the coach maybe. Okay, very cool. But then, okay, so that's great. That's a great step. But you were saying that you were still having social anxiety and depression after that?
Annie [31:10]: Yeah.
Adeel [31:13]: So what got better? Like the breakfast got better kind of thing? Or I'm just curious how things shifted?
Annie [31:21]: yeah so things got much better like uh during practices and stuff like i had i was much more talkative and i wasn't you know like always looking down and just being so generally afraid and this made it a little easier when i would sit at breakfast with everyone like i was able to look up and talk most of the time but there was still this like lurching anxiety um About the, it was mostly about the motor thing of bringing the food to my mouth and chewing. I was just so self-conscious that everyone was watching me and everyone could hear me chewing and something like that. It was almost like a reverse misophonia. I was like, I'm going to set everybody off and they're going to be super mad at me.
Adeel [32:03]: Just be hyper self-aware. We're all, we tend to be more self-aware, but that seems like a next level.
Annie [32:10]: Yeah, it was very hard to deal with in that way. Because I think one thing that helps my misophonia a lot is usually when I'm in restaurants, it's much better than in smaller areas because restaurants have music. Yeah, background noise and music and other conversations and things like that. so i thought i would be okay eating in the dining hall but then there was just like this extreme nervousness around my own presence and a lot it seems like a lot of subconscious things um that and bodily functions that i just had no conscious control of yeah yeah yeah wow okay um and
Adeel [33:06]: Okay, so, and then you said that Misukuni kind of came back with a vengeance. Yes. And this is after this post-skit phase, right?
Annie [33:17]: Yeah, I took a year off because the anxiety and depression were very overwhelming. And as I took that year off, I started to go to these little support groups to talk about these experiences. And then as I would go to these support groups, people would be chewing gum and things like that in them, and it just drove me crazy and led me down a hole where I was like, I don't feel like I don't fit in anywhere, or I don't belong anywhere because of this misophonia thing. I just had so much shame around it.
Adeel [33:52]: Yeah, okay, so let me just frame this for everybody. Yeah, you go to college, you hit a point where your social anxiety and depression get to the point where you have to take a year off. During that year off, you go into support groups to help you in some way. And then that backfires, right? Oh my God. Okay. I don't mean to keep like, this is, yeah, this is intense. I mean, how did you, and was this at home? Did you go back home for this or was it, you took a year off? Okay. Gotcha. So you were basically going back to kind of, you knew you were going back to kind of chaos too as well. So there's a lot of stuff going on.
Annie [34:37]: um okay my family had moved into this new house during that year and the funny thing about this house was that it had no ceilings by design so there was no um How do you say it? No way to separate the noises that were transferred between the rooms. So you could hear people on all floors doing anything. And that drove me really crazy.
Adeel [35:04]: Oh, wow. One of those weird modern open... Yeah, I've stayed in some places that are kind of like that. Okay. I don't know who designed that. Yeah, that person used to be on a misophonia blacklist of some sort. Yeah. Okay. I don't mean to laugh, but it's just like you took a year off out of desperation, and then your support group, everyone's chewing, and you go back home, and there's no ceilings, no separation. Okay. Wow. This must have really... I mean, not to put a... strong point of this, the helplessness must have been intense. Like, I don't know how you, how did you, yeah, how did you get past that?
Annie [35:51]: Yeah, that was one of the things that I was trying to figure out on my year off. And what led to really me deciding to really dive into psychology was because up until that point, I was starting to realize that for many years, since I was 11, really, I'd been operating in this state of confusion for a very long time the state of heightened arousal and then you know crashing really hard I was just very dysregulated and all over the place and I could never get my head on straight and maybe that's why I had such a hard time even speaking about the misophonia or reminding myself at it because I was so preoccupied with all these other things, isolating myself and all of that. And then when it would come up, I wouldn't want to face that myself because it just seemed like you couldn't overcome it. It's exhausting.
Adeel [36:49]: It's exhausting for most situations. Yours just seems... on several levels even higher. So yeah, so I'm curious how you're able to just kind of make it through, you know, just move into that situation. And let me remind everybody that you're like a college level rower. So that's quite a lot of energy is required for that. I mean, that's pretty amazing. Maybe you were able to redirect your energy or your negative energy in some way in certain situations.
Annie [37:20]: And that was another thing that was interesting too, taking up rowing, because I've never exercised before that in my life, and I'm not excited when I say that.
Adeel [37:29]: Yeah, I was going to say, you basically described yourself as someone who does nothing for three months in the summer, and then suddenly you're like a college rower. That's an intense...
Annie [37:41]: shift it was a huge shock for my body for sure and I think that may be why I was in such a heightened state of arousal all the time because from what I've heard and read about I I've heard from someone that when we go through something really traumatic or we go through chronic stress, all of the excess adrenaline goes into our fat cells. And then so when we go into anaerobic exercise, that's why some people may experience having painful memories come up or things like that. And so I'm wondering, after a lifetime of just kind of being inert and not moving much and just sitting in this very stressed, helpless position. And then going into college and going through this really intense sport, maybe my body was just shedding all of that stress in the span of two years. I did feel like a very great change physically and mentally after that. And ever since I took that year off, it's just been a long series of unraveling all of these things. And the further I go, the more I just, it all seemed, all roads seem to lead back to misophonia in my case. And I just keep unpacking it. And it really bothers me on a fundamental level. Like, what is this disorder? Why is it so selective? I read that so many people have so many different experiences with it.
Adeel [39:18]: Different experiences, but a lot of commonality. I mean, you mentioned the whole dad thing and they're around the same age and obviously the same triggers and visual stuff. There's a lot of commonality, but yeah, there are some definitely some differences in intensity. I mean, everyone has different experiences, so that's natural, but yeah. So kind of... um well it's doing that you're off so to get through it it sounds like you and you know this is kind of what maybe uh uh inspired you to fall to get deeper into psychology did then you kind of um maybe redirect some of your energy to this kind of mental energy, doing your own research. I'm just curious kind of how you got out of that hole, if you did, and learned more about this stuff. Did you just kind of like read or did you have mentors? I'm just curious how you dealt with that year.
Annie [40:21]: Yeah, I did a lot of reading. In the groups I was going to, they mentioned something called, or the book called The Body Keeps the Score. Have you heard of that?
Adeel [40:35]: I have, yeah. Yeah, just recently I've heard about it. And I think I, yeah, I actually have it on hold at the library. I need to pick that up tomorrow, coincidentally enough.
Annie [40:45]: Yeah, no. I think you're really going to learn so much about it. I think when I was reading through it, it informed me so much of what misophonia has probably done to my mind and body that led to all of these other extraneous problems I was having. It really created this link for me. And it was all based in... like stress biology and neuroscience, which I'm very interested in.
Adeel [41:19]: Yeah, that's, yeah, that's, well, that's, yeah, sounds like, yeah, I mean, it sounds like your experiences can really, your experience can really inform whatever you plan to do with research or trying to come up with therapies. Yeah, that could be really exciting. And again, as you pursue this, it could be a great kind of second chapter. um in your story yeah um did you um and so where kind of i mean how are you mentally basically i know it's a big question but how like now uh after you've went through that year and um have now graduated uh like compared to where you've been in the past
Annie [42:04]: Yeah, let's see. This actually happened a few weeks before I graduated when I started to notice that the misophonia came back really hard. And it reminded me about how, like you'd mentioned earlier, there's this commonality of everybody getting it around puberty or pre-puberty. So there's this hint that maybe it has something to do with hormones.
Adeel [42:27]: Yeah, that's come up in one or two episodes recently, yeah.
Annie [42:32]: Yeah. I know or I've heard a lot that people go through this second sort of puberty as they go through their 20s. And so I'm thinking now that I'm entering that, maybe that's what's causing it to really come out again. Or maybe it could be that I've just graduated. I maybe like the shock of it or I'm not stressed about social anxiety or exams and all of that. And it's just me. It's just your miscellaneous left.
Adeel [43:07]: Yeah.
Annie [43:07]: Yeah. Right. Um, but I definitely, in terms of all of that extraneous stuff, I feel like I've got my head on straight now compared to before. And so, um, it's like I am able to really direct myself at this problem that seems to be a very pivotal point in my life. And I don't know, maybe it's like coming back because it's calling attention to me. It's like, okay, we've had this problem for so long and you know, now you've dealt with all this other stuff and maybe this can be the next step, like you said.
Adeel [43:51]: Yeah, well, I mean, well, like you said, maybe, maybe the misfortune has been, I know you had a lot of chaos in other parts of your life, but maybe this was kind of the root or at the root of some of your, your anxieties and depressive episodes. And obviously you've put a lot of thought into this throughout your life. Maybe you're now, you're now able to kind of like, like, trying to help yourself and and um and now what's left is kind of hopefully uh hopefully all that's left is uh is this kind of the misophonia aspect of it and you can kind of focus on that um not that there's any cure but um yeah i i don't know if you've heard of um tom dossier yes right yeah
Annie [44:38]: yeah i think um my on my year off uh we've gotten so desperate with the misophonia um that we paid for one of his lessons and it was ironic enough that the session with him and then the guided recordings he sent me all sent my triggers off and I just accumulated with everything in my life. And I just, uh, on top of it being very expensive, uh, and I didn't want to waste my mom's money. I just said, I can't do this. You know?
Adeel [45:17]: Yeah. I've had Tom Dozier on the, on the podcast before. Yeah. He's, um, yeah, he's got, he's got his own, uh, way of dealing with it. I've had some people on who've, uh, you know, I've said it's helped. Um, I've had other people, uh, on who are, um, Definitely have some criticisms. So yeah, no, it's interesting to hear your experience. Have you also been kind of keeping up on some of the other, like the research from Dr. Kumar's group in the UK? There seems to be a lot of stuff going on there.
Annie [45:47]: Not yet.
Adeel [45:48]: Okay.
Annie [45:49]: Yeah, I definitely... Once I get more settled, after I get a job here, I really want to dive in and start... Everything seems fine now for you.
Adeel [45:59]: No, just kidding.
Annie [46:00]: Sorry, what was that?
Adeel [46:03]: no i said everything seems totally fun in your life so i don't know what you're talking about but no yeah i i yeah i totally agree that's yeah there's still a lot going on despite um yeah what you wait you know maybe some things related to anxiety getting better you're just graduated but uh But yeah, I mean, maybe I can point you to some of the episodes and articles, interviews and articles that I've alluded to in the past related to neuroscience, because some of the latest neuroscience research I think is quite interesting. But so, okay, yeah, so you said, yeah, some of your other anxieties and whatnot have... leveled off a little bit hopefully that'll stick um what does the kind of the future hold you just graduated like we're recording this in june um what do you plan for the rest of the year i guess have you ever even thought about it um let's see i think for the next year i really just want to save as much money as i can
Annie [47:05]: And hopefully, I wanted to look at grad schools, either here or abroad, that have to do with, or that have opportunities to research for misophonia and things like that.
Adeel [47:18]: Yeah, that would be, yeah, that would be great. And there are, yeah, there are, yeah, there are more and more groups, because there has been more funding available now for misophonia research. So I think... yeah i wish you wish you the best of luck in that maybe i can help in some way connect you with some some of these groups but uh um yeah i think yeah that'd be a that'd be a great next step and i'm glad to hear that you're kind of passionate about researching music has there been any um i know you're you know you're still settling in and whatnot um are there any particular aspects of it that you kind of want to focus on
Annie [47:56]: See, I really enjoy reading about the neuroscience studies on it, like looking at where it stems from in the brain. The last article I read about it saw some very interesting links between like the mirror neurons in our brain or like when we process people's faces, like that area of the brain lights up especially in mesophonic patients when they see people like chewing. and stuff like that. And then all of the ways that it's linked into the nervous system as well.
Adeel [48:30]: Yeah, so that motor neuron was what I was talking about. It was actually by Dr. Kumar's group in the UK. So, yeah, he's kind of the lead on that. And I actually had one of the other lead authors, Merceder Fanion, on the show last year. That might be an interesting one for you to listen to as well. And if you want me to, you know, connect you, I could probably do that. I'd be happy to do that by email or something like that. Just to kind of... Because they're, yeah, they're all... They...
Annie [48:59]: they're researching and they realize that there's not enough research they're happy to talk to anyone about uh about what's happening um so yeah that's amazing i've been looking at um yeah the research that they're doing in london specifically so that was one of like the abroad uh options i was looking at and at that i think uh duke university is also doing research on it
Adeel [49:23]: Yeah, absolutely. Yeah, I know Dr. Zach Rosenfeld, who leads the Duke Center for Misophonia as well. Yeah, you're right. Those are kind of some of the leading places. Dr. Jane Gregory at Oxford is also doing a lot of stuff from the CBT clinical perspective. yeah there's there's more and more people um coming up doing some more and more opportunities um so i think uh yeah i think someone with your background and academically and also kind of experientially would be super helpful and how i guess now that you graduate like what are your what are your family you know has anything changed with after that year with kind of how your family um interacts with you really to missifornia or
Annie [50:09]: Not so much. Yeah. I actually forgot to mention when, around when I turned 16 and started going to therapy for everything, once I opened up about the misophonia, the therapist encouraged that I eat alone, like not with the family. And that was, that changed a lot. And ever since then, everybody sort of had more of an understanding to it. and especially now we've moved into a new place from that ceilingless one and oh god okay oh yeah there there are safe uh burn down with yes soundless safe havens in the house that i can go to um so yeah now it's just uh things are much more settled in that sense and i'm able to just collect myself a bit more and look more deeply into it and yeah i'm excited for what i can do next and i really hope to read a lot more now that i have more time outside of university
Adeel [51:23]: Yeah. Any, uh, but let's, let's leave it on that. That's a positive note. And, uh, and, uh, yeah, you deserve the best in the future. And, uh, I think it would be an amazing story if you're able to do some amazing work that, that first, you know, first of all, helps you yourself, but then, um, I think could help a lot of other people. That'd be a great way to, um, redirect a lot of the, the energy that's probably built up inside you. So, um, yeah, thanks for coming on and sharing your story.
Annie [51:52]: Yeah, thank you so much for having me and for having this podcast. It's really encouraging to see that there's like this broader community being built. And that and the Misophonia Convention, which I've already mentioned, fills me with hope.
Adeel [52:09]: Thank you again, Annie. A really powerful story of resilience. And I hope you keep the strength to go forward in life and make an impact on Misophonia. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to the podcast. You can hit me up by email at helloatmissiphoniapodcast.com or the website, missiphoniapodcast.com. The easiest way to actually reach me might just be on Instagram or Facebook at Missiphonia Podcast. Support the show by visiting the Patreon at patreon.com slash missiphonia podcast. Music, as always, is by Moby. And until next week, wishing you peace and quiet.