S6E4 - Annie W.
Like my previous guest, 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 seems every time her life and misophonia took a small step forward, something quickly puts her two steps back. We talk about chaos in the home, negative responses from family, stepfamily and classmates at school, deep internalized shame, physiologically shutting down for months at a time, etc... But she braved through, usually completely on her own, but also finding allies when she needed them the most.
Disclaimer: These are machine-generated transcripts and so are not completely accurate. However they will be manually updated over time until they are.
[00:00:00] Adeel: Annie, welcome to the podcast. Good to have you here. Hi. Yeah, thank you for having. Yeah. Do you wanna add again, let us know just about where you live, what you do.
[00:00:10] Aine: Yeah, so I actually just graduated college.
So I'm living with family for a bit right now, trying to figure out next steps where I'm going to work and all of that. Cool.
[00:00:19] Adeel: What did you do in college, if I may ask?
[00:00:22] Aine: So I studied psychology in neuroscience and right now I'm hoping for, yeah, I'm actually hoping to. eventually get into research around Muon at some point.
[00:00:34] Adeel: Very cool. And did you enter college doing psych and neuroscience for the purpose of Misson or was it something you just decided to do more and more as you were learning about the program?
[00:00:45] Aine: Yeah, I was actually, when I first came in, I was really into literature and I wanted to do something with that.
Around my sophomore year I started to have ESP an especially difficult time with my misophonia. , and I had to take a year off cause of that. And I think that just really changed my perspective and I realized that was something I really wanted to dig deeper into.
[00:01:07] Adeel: Yeah. Was it just the usual kind of like student life and lectures that were causing more problems than usual?
[00:01:16] Aine: It's like really hard to describe because I, I think, based on what I've read in other people's experiences and heard throughout this podcast, it was like my misophonia was put on hold for a little while when I was in college. For some reason I think it, it started to manifest a lot. It's like social anxiety and severe depression and all of these other.
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.
It just seemed to blend into a lot of.
[00:02:03] Adeel: Wow. That's an interesting interesting little journey there. Okay. Hopefully I'm glad he graduated and and are still yeah, he made it through and are looking at helping with research. Then maybe we should just Yeah. Head back to the beginning and then we can come back to this as the narrative goes.
But when, yeah what was, what were things like when you first started noticing Mr.
[00:02:23] Aine: It's funny. I have 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 it was 11, I think.
And let's see, it was my mom started dating this guy and he had three kids. And we were all sitting down together for dinner one night at. And on the drive there, my mom told us like, oh I'm thinking of marrying this guy. 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 pulling us all the time we really don't like this guy. Don't do it. I don't know, it was just like when we got there, it was like this feeling of hopelessness. And so we were just sitting at the dinner. 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 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 just like, yeah, his chewing, coughing, all that. Chewing across the board was like any lip smacking was like a huge trigger.
[00:03:37] Adeel: And did it stay as your stepdad as being your only trigger? Or you said actually e everyone at the table was driving you crazy, right? Or ?
[00:03:44] Aine: Yeah, pretty much. But it was interesting cuz 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 Men's voices were too deep. That really set me off as a kid.
[00:04:00] Adeel: But your biological dad was not a trigger before that, that, that evening, right? No,
[00:04:06] Aine: not that, not before
[00:04:07] Adeel: then. Yeah. Interesting. Okay. So you're 11 so middle school. Yeah. How did things first of all, like how did you how did you react and how did that go over?
Because obviously there's a lot of flux in your life around that point. Yeah. What were your reactions slash coping methods, if you had any .
[00:04:24] Aine: Yeah. It was just I just remember it was such an overwhelming bodily feeling and also, it's hard to describe, but it was like a mix of 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 just felt like I. In some sort of pain and I was crying. Were you able
[00:04:45] Adeel: to leave situations or,
[00:04:48] Aine: 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.
and for a while nobody knew what it was. This was around I think it was 2011 when I started having these symptoms. And so everybody in the family had a theory like, oh, it's it's for attention, or it's O c D or anxiety. Yeah. And they just thought if I was exposed to it at the table, like that would just help me get.
[00:05:25] Adeel: 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?
[00:05:39] Aine: So for about I think it was a year and a half it was, it just stayed at that level, like that peak painful feeling every time.
And it was really bad at school too. Kids would always be chewing gum. And 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 gonna try to get over this, but I couldn't.
But I was super lucky because my mom ran into some post online that like described what misophonia actually was and then when she learned about. And we talked about it a bit more. She tried to look up any treatments in the area that could help and 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 muon for miles around us. So she took me there and they were like half studying my brain, half doing this treatment where I. send little electrical signals into my brain, like via these nodes 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 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. Yeah. For
[00:07:09] Adeel: those couple years after, the hand, the CD wasn't like helping you in every situation or just trying to help you go to sleep and not think about it. I'm just curious like how much it helped.
[00:07:21] Aine: Yeah. So from when I was like 13 to 14 and a half ish after I'd gotten that treatment, it.
it reduced the severity of my reaction to the triggers for a little bit. It was like it brought it down You like at the dinner table and stuff? Yeah, so it brought it down from a hundred percent pain to about 75. And 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 talk with the family instead of, cuz you know, I had the visual thing too.
I couldn't stand seeing people eat, so I was keeping my head down. But yeah, after that it made it like slightly better, but it didn't last for long. And I'm 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.
[00:08:14] Adeel: Yeah, that'd be interesting. I don't know if I'd really heard of that. So that's, , that's interesting. Especially if, if it could help you for a couple years, that's actually a reasonable amount of time. Obviously not good that it's come back with a vengeance, but yeah. That's, at least I.
That's something that's interesting. I'd be sur surprising that it would have helped in every situation, but so yeah that's quite So did was like talk therapy or C B T, that kind of stuff was never part of your experience in therapy was It was mainly, it's mainly been this,
[00:08:43] Aine: oh yeah.
That was that was like the major thing and yeah, I think what's. than the most damaging around me. And my menia is just this internalized belief that I don't know why, but for some reason or another I didn't wanna 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 that 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. Really hard depressive episodes. Those were like the reasons I would go into therapy and talk about, 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, that sounds like it's reaching into everything. And I'm like, yeah, I don't know why I have this blindness to it. But I've gotten over it the past few years. But yeah, before then it. I don't know why I didn't notice it. And
[00:09:41] Adeel: those episodes go back to high school too, the ones that like the intense episodes of these other conditions?
[00:09:49] Aine: Yeah. So it, it was 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 arou. 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 chewing wouldn't bother me so much, but the thing that always permeated to the surface every time is usually man chewing or older guys.
I don't know why that was always like the strongest trigger for me and always. Was at the forefront of bothering me. But yeah, everything else went to the back burner during those I don't know what they were, Lowe's or,
[00:10:39] Adeel: yeah. What did what did other, like kids at school do or say when they, if they saw you react the way you were reacting?
[00:10:49] Aine: So in middle school I was in a really small school and. Kids were always seeing me crying in class and it, for some of them it was like they they just passed off as, oh, she's like really weird and we're just gonna avoid that. And some kids were like, oh, I was bullied like quite a bit for it from other kids.
Especially cuz I, again, with the internalized I don't want to even admit I have this, like when people would ask, I just wouldn't talk about it or I'd make up some excuse that was just weirder. and then they would be like, sorry, I didn't
[00:11:25] Adeel: mean to laugh, but Yeah.
[00:11:27] Aine: No, it's okay. It's ridiculous when I think about it.
But and then there were girls who were like, oh my gosh, are you okay? What's going on? What surprises me the most was that teachers didn't really do anything when they would see it. Yeah. I was gonna
[00:11:41] Adeel: ask you if there was any, yeah. What was the teacher reaction? Was there any accommodation attempts at all?
[00:11:47] Aine: Yeah, there was one. They told me one of them would just stop in the middle of a lecture and turn to me and be like, do you need to go to the restroom? Do you need to be excused? And then cue the whole class looking at me like streaming and . Yeah. I can see
[00:12:02] Adeel: their next moving right now.
[00:12:03] Aine: . Yeah. So I just didn't wanna 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 it for a long time. And I think I was just so ashamed. And then people picked up on that shame and they just didn't know what to do with it.
. And then in high school I adapted in that. I always tried to sit in the back. Stay out of everybody's way. I just, I was like trying to be invisible. It always helps to be in the back corner of anything so that I don't, cuz whenever somebody's behind me, it drives me nuts.
[00:12:40] Adeel: Yeah.
Although, there's always that debate, but then if you're at the back you're suddenly able to see everybody's, chewing and whatnot if they're, if they've got gum. So the visual triggers can sometimes get you . Yeah. But but, and you were. But you were reacting the same way, like just internalizing and staying in class, but then reacting emotionally at the back of the class
[00:13:02] Aine: in high school.
Yeah. I still like just tears streaming and
[00:13:06] Adeel: in the same bullying or in ignor slap or ignoring or what from other
[00:13:11] Aine: people. Thank, thankfully in high school I was in a bigger school. And so I was able to be just more invisible. And thankfully there's no BU bullying. It was just like okay, I'm gonna leave her alone because
[00:13:24] Adeel: Okay.
Yeah. It one backs away. Yeah. Yeah. Okay. Interesting. Okay. And and then you had started to go to there. Was any of the social anxiety related, thinking back maybe related to like how you thought maybe people were perceiving you in this situation, these types of
[00:13:41] Aine: situations? Yeah. Definitely when I trace back all these things, a lot of it seems to be linked with Meson cuz 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 then was very hard for me to accept. And then, I would have this horrible physiological reaction. 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 keeping keeping my head down and not talking to people and just shutting everyone off basically.
And another thing was like by the time summer would come after these school years, I. Crash for three months. I wouldn't leave the room. I wouldn't take care of my hygiene. It was just like a really heavy depression. And I think that was all set in by the misophonia cause it's like a year of sitting in place and these school settings and really not being able to move and just having to go through these stressful bodily responses.
And yeah. Yeah, it was like developing a learned helplessness to. 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 I guess by the end of the school year, my body was like, oh my God, it's been too much.
I need to like hybrid.
[00:15:08] Adeel: Wow. Yeah. I didn't thought about that way, but yeah yeah, it could have been a, just a reaction. Just nine months of exhaustion basically. And that's just not your body, just not knowing what to do and just shutting. Interesting. And okay what, but what about did you have a group of friends that you could maybe trust or be confidants with?
Or was it tough to do that?
[00:15:34] Aine: Yeah, it was 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? I want to be here and have a good time.
But you yeah. Ruined it for me. And then they would get like very angry with me. And usually they were, yeah, the response was just you should leave. And then so I internalize this belief like maybe I just shouldn't tell people because it is ridiculous and I can't explain it.
And, maybe I. Excuse myself, but when I turned 16 I actually became very close friends with this girl, and she was the first person who pulled me aside and she's no, really tell me what's wrong. Don't just walk away. And then I was like, okay, your gum chewing kind of bothers me.
And she's look, I'll spit it out. And she did. And she's no. Please make a point to always tell that to me because. , I want you around. And then after that, I just opened up to her and that was the first time I was like, wow. How did that stir up? It was really confusing at first and yeah.
Made me realize, I 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 she was almost frustrated. She was like, come
[00:16:54] Adeel: on. Okay. That's just sounding annoying. No.
[00:16:57] Aine: Yeah, it was like I was like, oh wow, this is like what a friendship is. What I see in the movies, . It was cool. She was really kind and slowly but surely over the years I started looking more at it. And it, the biggest thing is asking strangers, especially when I'm on a plane and stuff.
Cause 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, and 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 seats in front or behind.
And every time I've asked, they said yes. It was good. Oh, that's
[00:17:40] Adeel: good. Okay. And what about like other coping MA mechanisms like north canceling and do you use , any of the tools like that or,
[00:17:49] Aine: 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 cuz I would be playing it when we were out eating or in public events and I just wouldn't be very present.
[00:18:11] Adeel: Do you have a lot of siblings, like when your mom married your stepfather did that expand the family? I forget how or how many siblings you said
[00:18:19] Aine: you had.
Yeah There were three stepsiblings and then I had two blood siblings and then one half sibling. So it was like a big family. Oh yeah. Second
[00:18:27] Adeel: kids. Yeah. Little bit Brady one. Brady wants Jackson there. How did, how was everyone's react? Do, did you feel , but like closeness with your family members, did you feel like this was like really a barrier to like being included in as part of the family?
[00:18:43] Aine: Yeah. I think it did and I won't get too much into it cause I feel like I'm rambling
[00:18:48] Adeel: already, but no. I'm a big, I'm into rambling but I don't mean to force you to say anything you don't want to say. No,
[00:18:53] Aine: no worries at all. It to. Summarize it. Yeah. Yeah. Feel free. Like my fam, it was very turbulent.
It, we didn't mix well, me, like my family and the step family, and there was just a lot of chaos and frustration and anger in the home. Everybody was hostile to each other in one way or another. So on top of that element.
[00:19:15] Adeel: Oh, I see. So there was a lot of other stuff going on. Okay. Yeah.
[00:19:19] Aine: Yeah. It was just a lot of chaos.
But in the moments where there was some sort of harmony, , I was still on edge because of the mesonic elements and , the smallest thing could tip someone off. Everybody was always on eggshells at times. Yep.
[00:19:37] Adeel: Is that family still together in the same way or no. Okay. Okay.
All right. Interesting. Okay. That takes us to college you, okay. So you went to college away from home as part of the, one of those reasons to get away. Yeah. Just didn't get a change of scenery, let's put it that
[00:19:54] Aine: way. Yeah. I was a couple states away. Forget rush.
[00:19:58] Adeel: Yeah.
Okay. And was there any apprehension, like, how did that experience. Yeah. Any apprehension of kind of what it's gonna be, what is it gonna be like,
[00:20:06] Aine: yeah. And here's where that strange blind spot I had for misophonia came in because I just assumed, yeah. Once went off to college I was going to be cured.
I was going to have no problems at all, . And 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 shamed for it. And yeah, that didn't work out. But thankfully after that semester, I was able to have a room to myself cuz college is really accommodating for disabilities, which I'm really grateful for. But, and then as for classes, I am so lucky to say that there were only two classes in my whole time there that I had some SPH phonic incidences and which only further increased my blindness to the disorder.
But, ah, yes it, and when they did come out, it was only mildly aggravating too. So again, it was dormant for a while there. But one thing I remember, really vividly was when I joined the crew team there and in the mornings they would all eat breakfast together.
[00:21:27] Adeel: The crew team being like a
[00:21:30] Aine: sport?
Yeah, a, the rowing team for the college. Oh, okay. Gotcha. Yep. , , they, the thing with that specific sports team was they would always eat breakfast together cuz they had practiced super early and it was a good bonding time for the team. So I really made an effort to sit with them cuz I, I wanted to have that bond.
But when I would do it, I had this extreme anxiety. I maybe it was a panic attack every, it was like, every time I. , I could, the only things I could hear when I sat down with them were my heartbeat and my breathing. And I just remember Yeah. On top of that, freaking out so much. What if someone tries to talk to me, I'm not gonna hear it.
Or oh wow. Anything. And I don't know if that, yeah. I don't know if that was my body preparing for the Mason phone or just totally shutting me out, or if it was mixed with the
[00:22:21] Adeel: system. Some nervous system issues.
[00:22:23] Aine: Yeah. Yeah. Yeah. So it's just hyper regulated for a really long time. And
[00:22:30] Adeel: How did you get through that?
Was that literally like you just decided to deal with that every day, every morning?
[00:22:36] Aine: Yeah, and I really have no idea why I did it. I remember just being in that. and during the practices, but especially during that time at breakfast, I was just so anxious. I could have barely looked 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 the first few months. But then 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. I still had the, and I still have it. That thing. My nervous system just really freaks out when I'm eating with groups of people and it's it almost surpasses the mesonic trigger reactions.
It's just like constant arousal.
[00:23:22] Adeel: Okay. Wait. Wow. Okay, so you went you said, 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, like, how did that go? Did you just, you start to tell people and then they were like, your.
16 year old friend. They're were very accommodating and then things were
[00:23:42] Aine: okay. No, it was interesting though, cuz I was just 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. Stiff straight up and tear the food up slowly to my mouth,
And they just thought I was very proper or something. Yeah. 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 muon. Only a few really close people who have, if are more than a common accommodating. But it, by opening up, I think it was just by the end of the week we have.
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, . Cause everyone did nose goes and deciding who like reads the script. So I went up and read it and then everyone everyone just 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 oh, I'm, I don't have to be afraid of these people anymore.
[00:24:54] Adeel: Wow. And was this disco was not related to Ms. Poney at all? This was just no, I was just making fun of You're just having fun. Oh, you were making fun of what?
Sorry? My coach . Okay. Yeah. Cool. Okay. sounds. Yeah, that sounds amazing for everyone except the coach maybe, but , yeah. Okay. Very cool. But then, okay so that, that's great. That's a great step. But you were saying that you were still having social anxiety and depression after that. Yeah.
And so what got better, like the breakfast got better kind of thing or curious how things.
[00:25:32] Aine: Yeah, so things got much better. During practices and stuff, like I had, I was much more talkative and I wasn't, 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 about the, it was mostly about the motor thing of bringing the food to my mouth and chewing. 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.
Yeah. Subconscious of, I was like, I'm gonna set everybody off and they're gonna be super mad at me. Just
[00:26:09] Adeel: hyper self-aware. We are, we're all, we tend to be more self-aware, but that seems like a next level .
[00:26:16] Aine: Yeah, it was not. It was very like, hard to deal with in that way. because I think one thing that helps Lisa, my niece po a lot is usually when I'm in restaurants it's much better than in smaller areas cuz restaurants different noise.
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. My own presence and a lot, it seems like a lot of subconscious things that in bodily functions that I just had no conscious control of.
[00:26:59] Adeel: Yeah. Yeah. Wow. Okay. And it's, okay. And then you said mis funny, came back with a vengeance. Yes. And this is after this post skit. Days, right?
[00:27:14] Aine: Yeah. I I took a year off because the anxiety and depression were Oh, okay. 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 just drove me crazy and led me down a hole where I was like, I don't. I feel like I don't fit in anywhere or I don't belong anywhere because this thing, I just had so much shame around it.
[00:27:45] Adeel: Yeah. Okay. So let me just to frame this, everybody, you 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 the year off you go into support groups. help you in some way. , and then that backfires, right?
Yeah. Is that, oh my God. Okay. I don't mean to keep this is, yeah, this is intense. 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 you knew you were going back to chaos too as well.
So there's a lot of stuff going on. Okay.
[00:28:23] Aine: Oh yeah. I had my family had moved into this new house, okay. During that year. And the funny thing about this house was that it had no ceilings by design, so there was no oh, how do you say it? No way to separate. , the noises that were transferred between the room so you could hear people on all floors doing anything.
And that , oh, was this
[00:28:45] Adeel: one of those weird, crazy Oh wow. One of those weird, modern, open. Yeah. I've stayed in some places that are like that. Okay. Oh, exactly. I dunno who designed that. Yeah. That person needs to be on her misophonia, blacklist of some sort. Sure. Okay. Oh God, . I just I don't mean to laugh.
It's just like you, you took a year off to 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 enough to put a strong point on, but this, you, the helplessness must have been intense.
I don't know how you, how did you, yeah. How did you get past? .
[00:29:27] Aine: 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, crashing really hard and I was just very dysregulated. 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 about it because I was so preoccupied with all these other things.
Yeah, just isolating myself and all of that. And then when it would come up, I wouldn't want to face that myself because it, it just seemed like, , it's it, you couldn't overcome it. And it's exhausting.
[00:30:20] Adeel: That's scary for me. It's exhaust exhausting for most situations. Yours, it just seems on several levels, even higher.
Yeah. So I'm curious how you're able to just make it through, move into a situation. Yeah. It's a, and let me remind everybody that you're like a college level rower. So that's quite a a lot of energy is acquired for that. That's pretty.
maybe you were able to read, redirect your energy or your negative energy in some way in certain situations.
[00:30:46] Aine: 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 Exactly, I say that. Yeah,
[00:30:55] Adeel: I was gonna say, you, you basically described yourself as someone who like does nothing for three months at, in the summer, and then suddenly you're like a college
That's an intense. that shift. ,
[00:31:06] Aine: 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 of the time, because from what I've heard and read about I've heard from someone that when we go through something really traumatic or we go through tr chronic stress, all of the excess adrenaline goes into our fat cells.
And then, so when we go into anaerobic, . 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 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. But at, 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 seem, all roads seem to lead back to misophonia in my case, and I just keep unpacking it.
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 and different experiences.
[00:32:31] Adeel: Different experiences, but a lot of commonality. Yeah, you mentioned the whole, the dad thing and the around the same age.
And then obviously, the same triggers, the visual stuff. There's a lot of commonality, but but yeah, there are. , definitely some differences and intensity. Oh, everyone has different experiences, so it's, that's natural. But yeah. So during that year off, so to get through it, it sounds like you, and this is what maybe sh inspired you to fall to get deeper into psychology.
Did. Then you , maybe redirect some of your energy to this kind of mental energy doing your own research. Like I'm just cur curious, kind, how you got out of that hole if you did and learned more about this stuff. Did you just like lead or did you have mentors? I'm just curious how you, how yeah, how you dealt with that year.
[00:33:18] Aine: 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. I don't Have you heard of that?
[00:33:27] Adeel: I have, yeah. I've yeah, just recently I've heard about it. And I think I, yeah, I actually have it on hold at the at the library.
I need to pick that up tomorrow. , coincidentally enough. Okay.
[00:33:36] Aine: Yeah, no I think you're really going to learn so much about it. I think. 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, between, and it was all based in like stress biology and neuroscience, which I'm very interested in.
[00:34:06] Adeel: That's, yeah, that's that's, yeah. Sounds yeah, 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, it grew and, as you pursue this, it could be a great kind of second chapter in, in your story. Yeah. Did you and so where how are you mentally, basically, I know it's a big question, but how, like now after you've went through that year and have now graduated compared to where you've been in the past?
[00:34:39] Aine: Yeah. Let's see, I, this actually happened a few weeks before I graduated when I started to notice that the Ssop came back really hard. , it reminded me about how like you'd mentioned earlier, there's this commonality of everybody getting it around puberty or prepuberty. So there's this hint that maybe it has something to do with hormones,
[00:35:01] Adeel: Yeah. That's come up in one or two episodes recently. Yeah. Yeah.
[00:35:04] Aine: And I know, or I've heard a lot that people go through like the second sort of puberty as they go through their. 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 and I maybe like the shock of it or I've, I'm not stressed about social anxiety or exams and all of that, and it's just misophonia.
It's just your
[00:35:33] Adeel: left. Yeah.
[00:35:34] Aine: Yeah. But I. in terms of all of that extraneous stuff. I feel like I've got my head on straight now compared to before. And I, 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 okay, we've had this problem for so long. , now you've dealt with all this other stuff and maybe this can be the next step,
[00:36:11] Adeel: like you said. Yeah. Like you said maybe the miso has been, I know you had a lot of chaos in others parts of your life, but maybe this was the root or at the root of some of your anxieties and depressive episodes.
Obviously you've put a lot of thought into this throughout your life. Maybe you're now able to try to help yourself and and now what's left is hopefully hopefully all that's left is is the misophonia aspect of it, and you can focus on that.
Not that there's any cure, but,
[00:36:38] Aine: Yeah. I don't know if you've heard of Tom Dosier. Yes. Yeah, I think my, on my year off we'd gotten so desperate with the Lisa phone 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, set my triggers off, and I was just accumulated with everything in my life.
On top of it being very expensive. And I didn't wanna waste my mom's money. I just said, I can't do this.
[00:37:13] Adeel: Yeah. I've had Tom Doscher on the podcast before. Y yeah, he's yeah, he's got his own the way Yeah. Way of dealing with, I've had some people on who've have said it's helped.
I've had other people on who are definitely have some criticism. Yeah, no, it's interesting to hear your experience. Have you also been 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.
[00:37:36] Aine: Not yet. Okay. Yeah, I definitely . I want, once I get more settled after I get a job here I really want to dive in and
[00:37:44] Adeel: start. No, everything seems fine now for you. No, just kidding. But yeah. Sorry that No, everything seems totally fine in your life, so I dunno what you're talking No, but no.
Yeah I, yeah I totally agree. That's . Yeah. There's still a lot going on despite yeah. What you know, maybe some things related to your anxiety getting better. You're just graduated. But yeah, 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 the cu some of the latest neuroscience research, I think is quite interesting. But but okay. Yeah. So you said yeah, some of your other anxieties and whatnot have. leveled off a little bit. Hopefully that'll stick. What does the kind of the future hold You just graduated, like we're recording this in June.
What are your plans for the rest of the year, or have you even thought about it?
[00:38:29] Aine: Let's see. I think for the next year I really just want to save as much money as I can. And hopefully I wanted to grad schools either here or abroad that have to do with, or that have opportunities to research for me, felony and things like that.
[00:38:49] Adeel: .
Yeah. That would be, yeah, that would be great. And there are yeah, there are, yeah, there more and more groups cuz there has been more funding available now for misophonia research. So I think . Yeah. I wish you the best of luck in that. Maybe I can help in some way connect you with some of these groups.
But yeah, I think, yeah, that'd be a, that'd be a great next step, and I'm glad to hear that you're passionate about researching. Mr. Point. Have, has there been any I know you're, you're still settling and whatnot. Are there any particular aspects of it that you want to focus on?
[00:39:18] Aine: See, I really enjoy reading about the neuroscience studies. , like looking at where it stems from in the brain. I thi the last article I read about it saw some very interesting links between the neuro neurons in our brain, or like when we process people's faces, like that area of the brain lights up, especially in ssop phonic 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.
[00:39:46] Adeel: Yeah. So that modern neuron was what I was talking about. It was actually by Dr. Kumar's group in, in, oh, in the uk. So yeah, he's the lead on that. And I actually had one of the other lead authors, Merced fan on the show last year.
That might be an interesting one for you to listen to as well. And if you want me to, connect, you could probably do that. I'd be happy to do that via email or something like that. Just to kinda cause they're, yeah, they're all they're researching and they realize that there's not enough research.
They're happy to talk to anyone about about what's happening. So yeah.
[00:40:18] Aine: Amazing. I've been looking at yeah, the research that they're doing in London specifically. So that was one of the abroad options I was looking. , I think. And at that, I think duke University is also doing research on it.
[00:40:30] Adeel: Yeah, absolutely. The de yeah, I know yeah, I know Dr. Zack Rosen Rosenfeld, who leads the the Duke Center for Misophonia as well. Yeah, you're right. That's, those are the, some of the leading the leading places. Dr. Jane Gregory at Oxford is also doing a lot of stuff on the C B T clinical perspective.
And so yeah there's more and more people coming up doing more and more opportunities. So I think yeah, I think someone with view your background and academically and also experientially would be super helpful. And how, I guess now that you're graduate, like what are your what are your fam, has anything changed with after that year with how your family interacts with you really to Ms.
Poya or who are
[00:41:08] Aine: not so much? Yeah, I actually forgot to mention. Brown when I turned 16 and started going to therapy for everything, once I opened up about the meson, the therapist encouraged that I eat alone, like not with , the and that was, that changed a lot. And ever since then, everybody's had more of an understanding to it and especially, we've moved into a new place from that ceiling list one and
[00:41:40] Adeel: Oh God.
[00:41:40] Aine: Okay. Oh yeah. There, there are safe it needs to be burned down with Yeah. Soundless safe havens in the house, that I can go to. So yeah, now it's just things are much more settled in that sense and I'm able. , collect myself a bit more and look more deeply into it. And yeah, I'm excited for what I can do next.
And I, I really hope to read a lot more now that I have more time outside of university.
[00:42:13] Adeel: Yeah. Any but let's leave it on that's a po a positive note. And and Oh yeah, you deserve the best in the future. And I think it would be an amazing story if. Able to do some amazing work that, that first, first of all helps you yourself, but then I think could help a lot of other people.
That would be a great way to redirect a lot of the energy this pipe built up inside you. Yeah. Thanks for coming on and sharing your story.
[00:42:38] Aine: Yeah, thank you so much for having me and for having this podcast. It's really encouraging to see that there's this broader community being built.
that and the Lisa Phonek Convention, which I've heard you mention fills me with Hope .
[00:42:54] Adeel: Thank you again Annie, your really powerful story of resilience and I hope you keep the strength to go forward in life and make an impact on misson. If you like 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 firstname.lastname@example.org or. MIS podcast do com. Easiest way to actually reach me my just be on Instagram or Facebook at Miss one podcast. Support the show by visiting the patriot patreon.com/mis. Podcast. Music, as always is by Moby. And until next week, wishing you peace
[00:43:34] Aine: and quiet.