Annie - Navigating misophonia with art and therapy.
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 5, Episode 29, the second last episode of this long season. My name's Adeel Ahmad, and I have Misophonia. This was one of the most memorable interviews, for me at least, from the last batch that I recorded late last year. Annie has been through a lot and has thought really deeply about miso and their comorbid conditions, ranging from complex PTSD, bipolar, substance abuse. We talk about all that and how they overlap and don't overlap. We talk about a fascinating topic called internal family systems, medication, and a bit about their zine writing. I'll have links to their Etsy store where you can buy copies of their zines. A quick reminder again, you can email me at hellomissiphoniapodcast.com or find me on Instagram or Facebook at Missiphonia Podcast. I'm also on Twitter at Missiphonia Show. And of course, I want to thank everyone for their support on Patreon. If you want to contribute there, there is the Patreon page at patreon.com slash missiphoniapodcast. And again, I want to remind everyone that one of the best ways to get the word out is to just Leave a quick review or rating wherever you listen to this show or just share it on social media. All right. Let's get to my conversation with Annie. Annie, welcome to the podcast. Good to have you here.
Annie [1:27]: Thanks. I'm really excited to be here.
Adeel [1:31]: Well, do you want to tell us kind of where you're located a little bit?
Annie [1:36]: Yeah, yeah, sure. So I'm in Scotland, United Kingdom. I've lived here for about, yeah. I don't know, I've lost count, but for quite a while, over a decade. But I was brought up and grew up in France.
Adeel [1:51]: Oh, okay. Gotcha. And so what are you doing out in Scotland?
Annie [1:56]: Yeah, well, at the moment, up until a few weeks ago, I was not working. So maybe for the past three years, I've been out of work on mental health crimes and such. So about a few weeks ago, I have started doing a course in mental health peer support. So that's been pretty cool.
Adeel [2:21]: Interesting.
Annie [2:22]: Yeah, yeah. It's just kind of a nice way to get back into working. You know, before that, I worked in social care or in the third sector, which I guess in the US is like a non-profit. And I get a bit burnt. I think I only had like so many years worth of energy for the typical workplace. And I've used them all up in my 20s. I'm 35 now and I'm like, okay, I'm done. I just wanted something different. So peer support is quite cool because it's what is based on your lived experience. So you kind of support people with that, using that as opposed to being a, you know, a doctor or a therapist. So it's really quite cool in a way. Yeah.
Adeel [3:04]: Peer to peer support. So how would you, would you, would it be through setting up a practice or online?
Annie [3:11]: So a lot of people do it online nowadays, especially, you know, I mean, it's been done online for a while, but yeah, you can do it whatever way you want. I think that's kind of like the beauty and the weirdness of it is very much anyone can be a support worker, but more and more, a peer support worker, but more and more now, you know. more traditional settings employ peer workers. So you can work through another organization and you can kind of set up your own thing. I'm not that far ahead yet. Yeah, you're taking a course.
Adeel [3:37]: Right, right. And are you interested in kind of like all the mental, kind of the universe of mental health or are you focused on misophonia or anything else?
Annie [3:47]: So interesting with my misophonia, before I kind of looked at my misophonia, I had I had complex mental health issues already, like I'm a survivor of psychiatry. So I was, you know, I had really harmful experiences being younger. So I kind of define myself with that quite a lot. I mean, not like it's my personality, but it's a big part of the way I approach mental health. And, you know, I had a BPD diagnosis I don't really identify with, but I think really overlaps with CPTSD. And I kind of consider... So I'm really interested in that. And I had a substance use issue as well for a very long time.
Adeel [4:23]: What is, sorry to interrupt, BPD? Was that short for?
Annie [4:27]: Oh, you know, it's borderline so-called personality disorder. So it's mostly about emotional dysregulation and such. But yeah, I think it's yeah I mean let's not get into the politics of it but I think it does overlap with me so in the sense that you really struggle with with regulating your emotions and you get triggered and and you know and a lot to do with you know not not the prefrontal cortex but the other one that's about memory and such so it's pretty related so yeah so I had to deal with a lot of that you know I worked a lot on my own recovery, learning about, you know, neurotypes, et cetera, and doing a lot of the stigma, all that stuff, you know. And I think, you know, I've always, I think my kind of, you know, I've done a lot of work and I'm really interested in internal family systems, all that stuff to do with kind of the personalization, dissociation, all that stuff. And, but when it came to misophonia,
Adeel [5:37]: and it felt so separate in a way it's always been really strange yeah in in the uh just it when you're uh thinking about mental health and how it's um understood in society kind of thing it's always kind of the ugly duckling kind of set set aside or i mean i meant in my sorry i'm a little uh
Annie [6:04]: I'm a little anxious about talking about it, so I'm struggling to organize my thoughts.
Adeel [6:09]: Oh, don't take your time.
Annie [6:10]: Okay. I meant more like on a personal level. So I'm going to tell you the first time I realized I had misophonia, like this is what it's called. I know a lot of people mentioned the New York Times. I never really came across that, maybe because of not growing up in an English-speaking country and then being in the UK. I don't know. but but i think in 2013 maybe is when i first realized it i was i was in my flat and i was just freaking out and i looked it up and i saw a yahoo answers thing and someone described just exactly exactly what was going for you know the neighbors are playing music oh, it's only in the afternoon. It's not that bad, but I just want to kill them. You know, when you see that thing, you have the light bulb moment. Yeah. And I just had this long, passionate reply, you know, oh, man, you know, you're not the only one. I feel the exact same, you know, and I was like, shit, this is a thing. But despite at the time I had a good kind of toolbox, a good grasp on mental health, you know, on... emotional regulation, which trauma influences your brain, etc. You know, the sprints theory theory, I don't know if you know about that. And
Adeel [7:19]: I don't think so. But yeah, we can talk about that too. Yeah.
Annie [7:23]: So, you know, I felt like I could grasp on all that, but I could not for the life of me deal with misophonia. And that's what I mean by separate. And, you know, everything else I've done in therapy and such, or even within the community, within my relationships, I could always tie it back to my growth, my recovery, you know, finding myself again, all that jazz. But with misophonia, I was like, this is a separate entity that makes no sense to me, you know. When I come out of a misophonia episode, whatever, I have learned nothing about myself. Do you know what I mean?
Adeel [7:59]: You can't tie it back to anything. It's like you don't know.
Annie [8:01]: Exactly.
Adeel [8:02]: Well, I'd be curious, like, when do you remember when you first started to be sensitive to SAMS?
Annie [8:13]: think i've always had like a lot of people you know we've been on your podcast a kind of sensitivity to meal times and things like that sensitivity to body related sounds personal space you know kind of yeah so i've always kind of had that and for me i think the issue like a lot of people is i was met with really negative reactions when i voiced it as a child and that's kind of i think i absorbed all that and on top of it I think for me, I've realized recently it wasn't just the signs that other people made. It was also the fear of being heard. So I remember that, you know, I would walk on eggshells quite a lot. I would kind of tiptoe, you know, tiptoe to the top of the stairs, the first floor and kind of listening to my parents talk. And, you know, they'd be having arguments or they'd be having a tense conversation about me because I was, you know, very, I don't know, dysfunctional with humor. So I was like, what are we going to do with her? Blah, blah. And a lot of that and a lot of adults. So, you know, my parents barging in my room with something to vent or some complaint about me. um because i was listening to music or because i was crying you know stuff that's just kind of grim or my mom come you know people coming in and venting and using me as this kind of you know tool for emotional regulation you know never really knowing what mood your parents were going to be in and i think i just had these really volatile parents who were very kind of guarded but sometimes they just kind of exploded you didn't cheat yet so you know i'm not going to get into detail but for me misophonia is really, really linked to the home 100%. And most of my triggers around eating, etc, are kind of gone over time. And because I've learned, I've managed to apply my kind of trauma work to coping skills eventually, when I understood misophonia as kind of a trauma response for me, you know, because it's so similar. And the things in my eyes in my eyes is my main. main source of pain, you know, any, any noise in my house that I cannot control is very difficult. So I think, I think it's a lot of that. And I think, from the moment I kind of, you know, looked up this thing on Yahoo, and I was like, Oh, yeah, I have that. And the moment I realized this is a trauma trigger. It was many, many years, you know, I remember visiting my parents in France, and they had a TV on and I could hear it for the through the floor, you know, into the room upstairs. I was like, Please turn this down. You're like, Okay, turn it down, you know, five bars. And I'm like, Nah, nah, nah, nah, you got to put the headphones on and I really pissed off. And I just had a really bad meltdown, you know, really painful. And I was like, Oh, mom, you know, this is what's going on is when you put that TV on. I feel like someone's cornered me and he's trying to kill me. You know, and she's like, Yeah, you know, and I was like, Oh, okay, just like, Oh, my God, that's horrible. I'm so sorry. And she turned it down. And so, yeah. This was recently? This was maybe five years ago.
Adeel [11:41]: Yeah, relatively recently. Not when you were a child. Oh, sorry. It's interesting that your mom is... Your childhood was a lot of this trauma of being surprised and kind of paranoid about what people were going to... If somebody was going to come into your room and start... yeah like you said venting and just kind of like projecting their whatever they're dealing with on you to now when it seemed like your mom you know after the first five bars she did apologize uh is it does that mean that she there was some kind of has been some kind of maybe understanding or reckoning uh in the in the intervening years hmm yeah i think so because um
Annie [12:27]: I think I've been able to be quite vocal about, not really my childhood with them, but other things that happened to me, you know, outside of the home also, like, yeah, over trauma and assault and stuff. And it's been, especially with my mother, it's been quite nice. And she's, yeah, she's recognized that she's trying to accommodate and I can be more open about it, which is quite nice.
Adeel [12:49]: Okay, so she's more compassionate because you've gone through other stuff and that maybe, I hate to say it, but maybe the silver lining of a lot of this trauma was maybe you kind of made her realize that she should be more compassionate.
Annie [13:06]: I think she's always been fairly compassionate. I think my parents, when I was younger, my dad was a lot more angry. Yeah, you know. I think it's quite a classic case of my dad did everything he thought he was supposed to do. And he still got, you know, a crazy kid and his own emotional problems and what have you. I think my dad's quite very sensitive and he has, you know, we're very similar. And with my mom, it was a lot easier. I would just close her. I mean, it's really complicated, but it's just how it turned out. And yeah, she does have the compassion, but I would say she doesn't have the... the understanding that this is a chronic thing okay and it affects everything i do and so if i go to the house you know she doesn't understand that so i don't were you uh an only child growing up no i have a brother who's three years older and he's still around but um yeah he lives he lives in my hometown um i don't think he had anything like that going on um i don't remember him
Adeel [14:11]: teasing or maybe... No, not really.
Annie [14:14]: I mean, he did join in a little bit on the scapegoating me for everything that went wrong in the house because I was mentally ill. It was just quite factor. But I think he apologized since then and stuff. So he has his own stuff to deal with as well now. He has PTSD from going into the army, things like that. So, you know, and we had the same childhood. I think we were treated differently. We coped with it differently, but we had the same childhood. So he has his share as well. So no, I wouldn't say my family, I'm not close to my family, you know, I moved away, et cetera, but close enough that I can tell my parents, hey, you know, I'm going through this or through that. But interestingly, I'm not comfortable talking about misophonia because I think with miso, everyone's bothered by noise. I mean, noise is a huge problem in our society. Yeah. At least where I live. Yeah, you know, thin walls, cars, everything. You know, people going around their phone on speaker.
Adeel [15:08]: It's come up in a few episodes recently and it's just, yeah.
Annie [15:13]: It's just, oh my God, I try not to think about it. So, yeah.
Adeel [15:17]: You say it's hard to talk about, is it because it's like hard to kind of get people to realize that our problem is much deeper than... Yeah, it's nothing like, it's completely different.
Annie [15:31]: And yeah, I think there's two sides to it. One side is, for me, it's extremely revealing, because I have to reveal this, this part of myself that is quite vulnerable. I don't want to talk about it if I don't have to. But another part of me is also like, I'd like to talk about it. But yeah, you're just going to project your own, you know, irritation and noise onto it. And it's, trust me, it's not. I always say to people, this is a trauma response. This is nothing to do with this is really how I see it. And personally, you know, this has nothing to do with, with all the noise is annoying, you know? Yeah.
Adeel [16:05]: Yeah. Right. You don't want to do it. People, people tend to just gonna shrug and assume they understand it. Do you, um, do you, you know, I've had, I've had, um, you know, a number of people come on, have experienced, uh, you know, other traumas and see PTSD. Do you find it, um, people who know about that, do they shrug off the misophonia also? Because maybe, you know, in society, you know, there's a hierarchy of, you know, for better or for worse, there's a hierarchy of like bad experiences. So misophonia, you know, usually gets pushed to the bottom. You find it hard to kind of like... Right. How do you, I doubt you, I mean, I don't know, maybe do you rank it in your head kind of thing? Or is it kind of a mishmash? I'm just curious how you think about it in relation to some of the other stuff you've experienced.
Annie [16:59]: I don't have a hierarchy for it. And I think people around me who have lived experience of trauma and have some kind of awareness of work, they totally get it. They're like, yeah. And more and more now, you know, I'm in a lot of kind of PL9 communities and more and more people are like misophonia, misophonia, you know, people with CPTSD or autism and such, or PTSD for that matter. But for me, hierarchy, I think, actually for me right now, misophonia is dominant because I don't really identify my BPD diagnosis anymore. And I am in a good place recovery-wise for my substance use now. And so I'd say misophonia is not the main thing that I focus on. Because I think before it got lost a little bit as well in everything else.
Adeel [17:43]: Do you think your BPD was anything like misdiagnosed? Was it like misophonia that was misdiagnosed into something else ever?
Annie [17:53]: No, so my experience with BPD is first I got diagnosed with it. I was like, what the hell is this? And then I rejected it for real. You know, what is this? And then I rejected it. And then I explored it again with a therapist who had lived experience of it. And we totally reframed it as, you know, there's nothing deficient about you. And this is through a kind of radical non-pathologizing approach. I started to connect with, you know, with parts of myself, et cetera, and to really, really accept that, you know, having this brain, this trauma brain is nothing wrong. And so for me, it was like a portal into learning about myself. So it was a great experience. And the reason why I don't identify with it anymore, it's not because it's not really political. It's more that I don't really feel the symptoms anymore. I have, you know, I think when I first explored it, I was about 27 and I'm 35 now. So I'm like, yeah, you know. So for me, I'm more adhering towards CPTSD right now. I don't have an official diagnosis. I don't really want one. because it really feels like he overlaps with misophonia. And, you know, I feel like I really, I'm really into internal family systems. So it's this idea that you're kind of fragmented into different selves as a response of the prolonged harm or trauma that you experienced when you were developing. So you have different selves. So you have your fighter, you have your protector, etc.
Adeel [19:23]: Oh, that's what you meant by a family system? Yeah, yeah. So it's different selves inside you. Sorry, at the beginning, I thought you were talking about some kind of like a little pod of peers that you're kind of... No, I get it.
Annie [19:38]: Yeah.
Adeel [19:39]: I see. Okay, no, this is very interesting. So part of your work has been to identify these different... I don't want to say voices because that's a whole other thing. No, that's okay. Different sides of your personality or your being.
Annie [19:55]: Yeah, people call them either parts in that other thing called transactional analysis. It overlaps a little bit and it's ego states. So, you know, you'll have your child, your parents, your adult. So you'll have the happy child, the free child, and you have the rebellious child. It's all very complicated. And then when you're all together, there's the parents. And I think it overlaps with BPD, CPTZ. It's really about being able to kind of know what your needs are, et cetera. Because I think if you've got trauma, you suppress your needs, you're not really in touch with what's going on. I mean, of course, it's simplified for you. So you have these parts that kind of come up to try and do what's best. And I think when my misophonia triggers me, especially because it's around my home and my sense of safety, You know, there's parts which are like, we gotta fight, you know.
Adeel [20:44]: We're under threat. Yeah, right.
Annie [20:46]: Exactly. We're under threat, etc. And then it links to other things, you know. I think there's another issue in misophonia is when I get really angry and I'm sure you can relate because people think you're being judgmental.
Adeel [20:58]: Of course, yeah.
Annie [21:00]: And that angers me. It's like, they're not trying to upset you. It's like, yeah, thank you. Thanks for that. it's really difficult you know when you're being when you've been quite triggered that someone's like you know they're not trying to upset you like i know they're not trying to upset me but you know there's a part of me that believes that and this part of me is in control right now and she needs so they need to be sued and um so i think in terms of how i cope with misophonia i think there's two kind of toolboxes i have one is obviously on the spot you know earplugs white noise I go into a different room, having different places to sleep. Or even at the moment, I spend half my time at my partner's house because my neighbors might get up and walk. And that's enough to really just exhaust me and send me over the edge quite quickly. And I have to watch my substance use recovery. So it's a lot of stuff to balance. This is why I think it's really a chronic condition. So there's that. And then there's the in-between triggers. And I think that's the most important. And it's do it yourself. Understand what went on. And that's really heavy work because sometimes I remember things that I had maybe suppressed and stuff. And it's really... And it's also... accepting that this is what's happening to you, this is part of your life, and you're just doing your best to keep yourself safe.
Adeel [22:31]: Right, so you're not in the middle of a trigger. Is this almost like a self-reflection meditation time that you kind of carve out for yourself, that you think about this stuff?
Annie [22:45]: Yeah, exactly.
Adeel [22:47]: Okay, gotcha.
Annie [22:48]: Yeah, yeah.
Adeel [22:50]: And so when you mentioned thinking back on like things you're suppressing, you don't have to get into it, but are they things like, you know, those moments when you were a child when you were being barged in on or is it just kind of like... Yeah, exactly.
Annie [23:03]: So up until recently, my theory was like, this is so repressed, I do not want to access it. You know, there's a reason why it manifests from my body. So I do not want to access it, you know, but... yeah recently i moved into this new flat six months ago and i love it it's a great place but yeah there's it's just very badly insulated so i hear a lot of footsteps and some you know very kind of noise and um this is my worst trigger and so it's it's yeah it forced me to really go deep into soothing my different inner children and parts and yeah that's when i remembered and it was great you know because i kind of came to that conclusion that there's nothing wrong with with what I'm feeling, you know, I was really holding this belief. You know, you dig deep and you're like, oh, I had no idea I was holding this really harmful belief against myself, etc. Anyway, so yeah, it was great.
Adeel [23:54]: You were thinking about this harmful, some belief that you had of yourself, not related to your neighbors, but it's just part of the process of thinking back as you start to think about stuff that it wasn't related to. wow okay it's interesting i'm just sorry i'm asking so many questions because i'm like i feel like i kind of need to you know take some time to do some of this as well so this is really interesting to me um so yeah you can stop me to just to clarify because i'm like in my own head about it but i don't know how it comes across okay yeah no i'm letting you go because yeah you're you know you explained it really well but there's i know that there's so much behind it that i kind of want to clarify certain things just to yeah i can i can picture myself maybe trying this as well so yeah this is really interesting um but it's interesting yeah did you you know just uh obviously you know you well you said you you love your place but it's like it's got these triggers that are your worst triggers it's just i mean it's not uncommon that a lot of this kind of like you know um we'll you know we have other sides to ourselves like we like to live in certain types of places and certain types of environments and then we have this of these other you know but and sometimes we'll we'll kind of like maybe accept that we'll have to deal with some of these triggers It's just an interesting balancing act that it's not like we immediately go into the woods or anything and live there forever.
Annie [25:15]: No, you're right. You're right. You described exactly what I went through a month ago when it got really, really, really bad. And yeah, I was like, I almost moved out, even though I just moved in. Yeah.
Adeel [25:31]: I was wondering because you've, yeah, you've talked to so much. I was like, why wouldn't you just move? But we don't really do that. Yeah. Right.
Annie [25:39]: Yeah. I mean, also moving would bring, you know, I saw this flat, maybe $20 up from my street and it's a former shop. So it's detached. It's completely detached. It's like a tiny house in the middle of the street. So I went to see that. I was like, oh, this is great. And a part of me was like, look, you know, you need to acknowledge that. Yeah. The flats you live in right now, it's really nice. It it meets a lot of your needs. Okay, don't let the misophonia, you know, completely, completely, you know, drive you, you know, listen to the other parts of yourself, which are like, moving is stressful. Yeah, exactly. You know, the flat I'm in right now is really nice and all these things. Yeah, I think sometimes also even when I look for a place that would be meso-friendly, I overlook other red flags. So for instance, last year I bought a caravan for some reason.
Adeel [26:33]: A lot of people did last year, yeah.
Annie [26:37]: Yeah, I know a lot of people. I feel really just, you know, I'm just like anyone else. And yeah, and I'm stuck with it, you know. If anyone wants to buy a caravan in Central Scotland, hit me up. Yeah, yeah, yeah.
Adeel [26:50]: We'll get that message out.
Annie [26:52]: yeah so yeah i know you make a really good point it's a balancing act and it was quite good for me good thing to realize that yeah this is just something you have to deal with and i'm really lucky that i can come stay at my partners even though i mean i lived with her for several years prior to moving And part of the reason why I moved is because I had missile triggers here, which were really, really, really bad. They got really out of hand, I go into trouble with my neighbors, it was really bad, you know, and it was a good learning curve for me, because I realized also, for my own safety, I need to also be able to handle my triggers. Because, you know, I would I would just bang on the wall a lot and things like that. And they were a little bit hostile. They had been hostile to my girlfriend, my partner even prior. For all I know, they might have their own noise sensitivities. I don't blame them, but they're really hostile. And I had visual triggers. I couldn't even see them. It was really bad. So it was quite funny because now I'm back here, I have the time. But because this isn't my main home, it's easier to deal with. It's really a balancing act. But I'm quite lucky that I can come back here.
Adeel [28:01]: Yeah, that's interesting. The ability to move around, whether it's even in your own home, different rooms or different floors, or go to your partner's house. Even if you don't go that particular day, just having that knowledge that you could can kind of help your brain just relax itself a little bit. Yeah, especially when you think...
Annie [28:25]: Yeah, exactly. Yeah, no, don't do that anymore. And yeah, I just even avoid talking to my neighbors. They'll be like, how are you settling in? And I'll be like, can you hear yourself? And people have this notion of everyday normal noise. And I'm like, I don't know what that is. What is an everyday and I think people get really defensive, really, every time you bring up noise, you know, when this culture that people think if I come to you with a noise complaint or a noise question, I'm judging you as antisocial or something. And like, especially in Britain, people are just, yeah. I mean, maybe in other places, maybe I'm being a bit stereotypical, but people really freak out. And I'm like, no, you know, when I lived in Edinburgh and Big City, my neighbors were redoing their flat and it was like bang, bang, bang, you know, and I was working night shifts at the time. I remember coming home and thinking, and I had nowhere to go at the time, nowhere else. And I'm like, you know, I go and knock on their door and I'm like, hi, can I just ask you how long this is going to be for? There's noise and it goes, well, you know, I have to work. I have, you know, it gets really defensive and I can't understand, but I'm working night shift. And he goes, well, I work night shift. You know, it was really a battle and I had to be like, I was like, look, I have no problems with you doing work. I do not want to stop you from doing your work, but I need to go to sleep. And if this is not going to stop, I need to know whether or not I have to make a plan to sleep somewhere else. And as soon as I said that, it was like, oh, okay. I had to do all this diffusing work.
Adeel [29:57]: Do you know what I mean?
Annie [29:59]: And that's exhausting.
Adeel [30:01]: yeah no yeah the exhausting thing comes up too it's just like we we have to sometimes calculate in our heads like is this worth even mentioning because it's like what you know what are the chances of this me being in the situation again uh with this person um exactly what you know i have to then have to think about all the words to have to say and like how yeah it's like and then you think about all the times that you've that you've been dismissed and it's like he's kind of like do i want to roll the dice or no
Annie [30:32]: exactly yeah and and you're like am i gonna feel really unsafe in the middle of it as well for me you know yeah am i gonna yeah so and you know this is i mean this might be like a rant but this is what's really exhausting because you know parts of me are like i shouldn't have to live like this this is a mess that you know why why why isn't there a thing why on heist is better insulated another you know what why can't i live safely in my community why do i have why do i have to pay the price you know it's really annoying another part of me is like well it's it's it's it's not my fault that you know that's all this against me and it shouldn't really fall on my shoulders to make such an effort sometimes i really despair you know for me sometimes because my highest is my main issue and it's not because of the people i live with it's because of the people who live next to me, but it's almost like they're my housemates, because it feels so like, and I can't talk to them. And, you know, sometimes I do unravel a little bit. And I'm like, well, we live in such a weird, weird society was so individualistic. And, and, you know, and I'm like, you know, I think this is maybe my kind of history of maybe used, you know, being stigmatized a lot and being a psychiatrist survivor, but I'm really like, God, people do not care. There is no one cares about people with chronic mental health conditions, like no one gets it, you know, I really unwrap it, you know, I can really unravel and it's gone. Sometimes I have to go to that place and come back, you know, it's just, yeah, it's really tricky. And I think, I think that's the way I mean, I know there's a lot of misophonia, community stuff going on, and I'm a bit reluctant to take part. Because of my history, I'm really, you know, the contradiction is I'm really vocal and mental health activism and support is really important to me, but I'm also really reluctant to take part in anything quite visual because I still carry some level of discomfort about being open about mental health. I'm like, yeah, no, it's not all it's cracked up to be. It's not that cool. in the community and such you know yeah i've had really bad experiences in small groups um that were led by very dodgy dodgy doctors you know we just kind of want to have an entourage of mad people really crazy yeah and these things yeah they just pop up you know at any moment and so yeah because i know i know there's this like i mean this might annoy people but there's a problem that's like you know there's this there's great research in misophonia and such but i'm also like i'm always worried that there's this desire to really differentiate misophonia folk from the messier mental health conditions, the ones that can get you in trouble, the ones that were criminalized and such. And so I'm a little bit like, yeah, I don't know. Like I've been on a few message boards, which were quite slagging off other conditions and things like that. I mean, that's never the impression I got from your podcast, but from time to time, I know my like kind of psych trauma survivor rears its head and it's like, oh. this is so sanitized, you know, like the idea of a different brain or imbalance in the brain, I don't really like all that stuff, I think, you know, and to me also, yeah, I'm a bit worried, you know, if there's any kind of like protocol to diagnose miscarriage and there's a treatment course and if you're treatment resistant, what does it say, where does that leave you, things like that, you know, I really think, yeah, and I'm like, you know, especially if you have other conditions, other things going on and
Adeel [34:05]: I don't know.
Annie [34:05]: But it might also be great. You know, I really don't know. I think there's some really cool stuff about the study. When you hear a noise, you know, it feels like someone pushing you or something. It feels like a movement. I'm like, yeah, you know, I've been thinking about that a lot when I get triggered. And like, you know, that makes sense. So it's Yeah, it's pretty exciting. It's pretty cool. I think I didn't realize how big it was, you know.
Adeel [34:27]: Yeah, no, it's a big community. There's a lot of stuff going on. I totally understand. You know, I go to the conventions. Well, I've been going to the last few. And, you know, my Spidey, I try not to. I'm very careful about what I, you know, promote or believe. And so I can tell there's some... opportunists let's just say because this is so misunderstood so it's and it's it's it's there's this interesting uh arbitrage moment where so many people are desperate for an answer just there's no clear answer so people step in to try to fill the void and so i try to be very careful of that and um and not you know i'm just going to wait for the real research to come and however long it takes i'm not going to just jump on a bandwagon because no yeah good um
Annie [35:19]: Oh, absolutely. Yeah, I did mean that. I'm sorry. I completely... No, no, no.
Adeel [35:22]: I'm agreeing with you. I think I'm agreeing with you. Yeah, I think, hopefully, yeah, I just agree with what kind of, yeah. I mean, I completely... I like your approach, yeah.
Annie [35:31]: Oh, it's just me, I guess. But I agree with what you're saying. And, you know, yeah, you're right. And there's all these nights where, like, you know, here are plugs that pop up and suddenly there are great people in Misophonia. right yeah the instagram ads for uh right for earplugs and stuff right yeah and it's like are you sure you know uh yeah um but there's so much so much suffering i think for me like because i came to misophonia i was already so deep in in the mental kind of awareness and stuff and that um Yeah, but this is really me. This is my problem. I mean, not my problem, but this is my baggage that I would bring, you know, should be like, I don't trust anyone to, you know, I don't know.
Adeel [36:21]: I don't trust anyone by default, especially over the last year and a half. I mean, but that's a whole other podcast. But did, I'm curious, let me like jump around a little bit. Did your, did How did you tell, I guess, when you found out that, you know, I had a name or whatnot, did you then go back to your parents? I'm curious, especially with your dad, like, how did you, how did you? Oh, no, no, no. Okay.
Annie [36:52]: No. I mean, again, like I think misophonia is something I'm only kind of looking at now because I think as, you know, you mentioned a hierarchy, I wouldn't say, I don't think there's a hierarchy. I don't think it's more or less valid or, or, or. present but up until a couple years ago you know i was really really struggling with with my substance use unfortunately so you know you can't really look at your misophonia when you have that going on i mean it was alcohol use so was it was it medicating yourself do you think for the misophonia that has come up but i'm curious in your case if it was more yeah i've yeah I've heard other people for sure that makes sense. I would say yes and no, because it's a coping strategy for for me for feeling safe, you know, and feeling soothed. And so it overlaps, obviously. But yeah, so yeah, yeah, yeah, right.
Adeel [37:56]: Right.
Annie [37:56]: So it overlaps with the overall feeling. Yeah.
Adeel [37:59]: And was part of it, part of getting over that, what you were talking about, the family system of like identifying what was feeling vulnerable and talking to it.
Annie [38:09]: So yes and no. I think for me, I really practiced harm reduction for a long time. So I went to therapy, I worked for my share, but I didn't stop drinking because I needed it as a coping skill. I just tried to do as safely as I could. And then I reached a stage where I was like, okay, this is getting out of hand. Despite the harm reduction, I need to quit. I went to AA. And I worked for a few months and then it didn't work for me. It's just not a program I identify with at all. And after that, I eventually, after a few more relapses and really kind of bad times, I find a drug called naltrexone, something called a Sinclair method. It's quite controversial because it's harm reduction. So you still drink, but you drink alongside a medication. which basically um it's an opiate blocker so it goes into your opioid system you know your your opiate receptor opiate receptors in your brain because you know if you drink a lot you you have completely worn them out and it basically it re it rewires your brain it's it's very layman terms it's not that simple but it's it's uh it's been a life-saving drug for me and you I sound really cliche and I say that because everyone say that when they talk about this drug, but overnight, overnight, my alcohol is completely changed. So you take that, it binds to your brain, you have a drink and you're like, I don't want to drink. And I was ready for it because I had worked through everything I could work for. know i did not want to drink anymore i was aware that drinking was a coping mechanism that i needed i had completely accepted it i had no shame no judgment but i also was like this isn't good for me but i couldn't stop you know because cravings they're not just a physical thing you know they're an obsession uh a distress they're absolutely unbearable and this drug just really helps you really helps you And I still take it. And it's just been, it's just completely shattered any idea I had about recovery. And I've been misusing alcohol since I was 12. You know, it was a huge problem for me. I'd be in hospital because of it mentally. So it's not for everyone, obviously, but it's a great tool. And it's very hard to access. It's quite a battle to get it. So, yeah, it's just my little plug because I think it's quite a nice thing to talk about.
Adeel [40:43]: Yeah, I don't think that's come up on the show before. Yeah, for anyone who might be having similar experience. Yeah.
Annie [40:52]: And yeah, and it can lead to sobriety. And I think that's the end goal for a lot of people. But until you get, you know, it can remove that fear of relapsing. It's a very different, different approach. Yeah. So I'm really pro harm reduction. I've had such experiences with addiction services and And mental health services, they're really separated as well.
Adeel [41:17]: Okay. So, well, I'm curious, like in terms of other, do you have like any creative outlets that you've kind of, you know, a lot of people who've been through a lot, you know, are maybe artists or have kind of other artistic outlets. I'm curious if you've done anything like that to kind of, or it could be related to, to trauma or not. I'm just curious if you have like creativity is also big with this. So I'm just curious if you have any talents that we should know about.
Annie [41:48]: Well, I'm glad you asked. Yeah, I make zines from time to time, but my two kind of main zines are there on my Etsy. One is about being a psychiatry survivor and how it kind of influences me today in the way I approach services. And the other one is about my kind of early experiences of recovery. And actually, I am trying to make a zine about misophonia and specifically how it links to kind of what I call house trauma. And I am completely stuck trying to write it. It's really difficult, which is why I actually came onto your podcast. I thought, well, if I can't write a zine, at least I will have talked on your podcast a little bit.
Adeel [42:32]: So what do you mean by house trauma? You're stuck writing.
Annie [42:38]: That's just the a term I coined because it makes sense to me. And it's just a really, really my misophonia right now to to the experiences I had growing up within my house. So the family dynamics, the unhappiness, you know, the everything and, and I will still link it to, you know, I think a lot of people have this kind of home wounds, you know, which comes from their upbringing, whether it was, you know, and, and and hide links to the sense of control I really want to have in my house. You know, parts of me really want that control. And I also kind of link this idea of, you know, we all want to build that kind of perfect home, whatever that looks like, you know, where we don't repeat the same harm. that we've suffered, whether it's a family home, it's a little flat by yourself. And it's kind of about grieving that and accepting that you carry a baggage with you. And actually this idea of creating this perfect home is quite dangerous because you're always kind of, you know, you're running away from something, you kind of build it in the shadow of what happened to you. And I think the more you panic about repeating the same mistake, the more they're gonna follow you. So it's a lot about that. And it's about, so I kind of just, it's kind of a therapeutic scene where I really can explore. For the first time, I'm like, okay, I want to explore exactly what's linked to my missile triggers. And another part of it is about how, I mean, how terrible the housing situation is.
Adeel [44:19]: Yeah.
Annie [44:20]: You know, and how difficult, how difficult it is to find the right type of housing. You know, and especially if you live alone, you know, you know the flat I'm in right now I pay everything included you know what I pay is more than what the money I get in you know and it's always been like that for me and especially living in Onye and the people who lived there before me they were a couple and it's about that I know that people move in with partners or friends when they don't really want to you know it's just it was all a big thing. So that's why I'm having a hard time writing it. You know, it's installation. It's just I don't understand how that's even okay. Or, you know, where I live right now is a big house that was done into several flats. And it's like, why didn't you think about that? You know, it's like my, my kind of angry child self is like, you know, it's kind of political activist stuff. It's really pissed off at absolutely everything, you know, social justice warrior. It's like, why? You know? Yeah. Because I think it's where I'm at just now. I think, you know, my other triggers around eating, breathing and such, they're not as bad because I think I've just done a lot of healing in my interpersonal relationships and stuff. But making myself safe within my own home, you know, having my adult self kind of embrace all of my thoughts and be like, okay, how are we going to feel safe here? that's a whole other journey ahead of me I think and I'm also maybe it's linked with growing a little bit older and thinking about precarity and money and such you know I think it really overlaps and if because I have a hard time keeping full-time work and you know right now I'm on benefits and such and that has a big influence on my choice of housing so there's a lot of that as well it's like almost um realization that you know, my dreams of a safe house, which was mine, are compromised, you know, by just this state of capitalism. Things like that, yeah, for sure.
Adeel [46:45]: Yeah, it sounds like housing, shelter, it's one common thread for you since you were a child and you were just the family dynamic and dealing with all kinds of weird stuff. But it's become the one, it's almost like, I make a cliche, but it could be a character in your zine. Yeah, it's my concept. my concept album yeah it is a character yeah you're right no you're such a good listener yeah absolutely yeah um yeah oh do you have a by the way do you have like an instagram oh like i'll put you know a link to a lot of these things in the show notes but uh i'm assuming i i feel like we i don't know why since you first probably reached out but i feel like you do have a this some accounts social accounts online right that we i you know people can follow
Annie [47:36]: yeah um i've got an instagram and there's not much going on there um but um i would say go on my etsy shop this is my zines uh yeah definitely so uh it's uh sorry sorry truffles zines on etsy um yeah i'll give you the link of this thing yeah and um my zines are quite cheap because they're not they're zines so they're not for profit but if you want a zine and
Adeel [48:01]: you don't have the funds just reach out and i'm happy to send it to you yeah no i recommend everyone um yeah just yeah bye bye and support each other um yeah i was i mean i i also have a well, I took down the stuff, but I have the Misophony podcast app, which is not about treatment. It's just the podcast and sounds, but there's a section for art by Misophones because I feel strongly that we should be supporting each other's businesses and art and whatnot. So I'll definitely put a link in there and hopefully people can buy it from there.
Annie [48:37]: Yeah. There's no Misophones in there yet.
Adeel [48:39]: No, right, right, right. No, but yeah, yeah. But yeah. But yeah, we should support each other regardless. Yes, that's what you meant. But yeah, I miss when you've seen that would be, I mean, especially, yeah. especially after listening to this episode, I think people will be very intrigued as to kind of what you have to say. I think everyone, I think everyone hears a bit of themselves in each episode and this is going to definitely be one of them.
Annie [49:07]: Yeah. I was really surprised I was listening to you. I was like, yeah, yeah, you know, nodding along like, yeah, totally. But yeah, I don't remember anyone saying, but I haven't listened to all of them, obviously, but I don't remember anyone saying
Adeel [49:22]: yeah i've got a fear of being heard and that that was such a big oof for me you know so oh yeah no a fear of being heard uh i mean there is even an episode with um one of the many johns that i interviewed he his discipline is starting in his actually uh early 40s so not like older than you but it was his um his second child was born his wife was having uh you know postpartum and he had a younger child who was making a lot of noise so there was a lot of walking on eggshells in the house and that's when oh my god there you go so there have been a few a few stories of that along oh you know over the um course this this podcast so that is so cool yeah i've been wanting to do a submission based scene as well about this but i'm just not organized but it's definitely it's really great it does i mean i think everyone's got specifics
Annie [50:14]: And I know my specifics is like, I'm like, oh, I don't trust anyone. But everyone's got specifics. But at the end of the day, I completely agree that we all have this lived experience and these stories, this story in common. You know, definitely. We have a lot in common.
Adeel [50:28]: Yeah. Yeah.
Annie [50:29]: And it was great to listen to. Yeah. Yeah. You know, I think the sense that other people are going through it and I could see how healing and powerful that could be, you know, if you feel really isolated. Uh, definitely.
Adeel [50:41]: How do you, so, um, you know, you listen to a lot of these apps. How do you, um, approach, uh, other than banging on all your neighbors' walls? Like, how do you talk to your, to your, to your friends about it? Or, or do you, or do you calculate, like, do I need to?
Annie [50:53]: I don't talk to anyone about it. I wait a very long time before I bring it up. The only person that really knows about it is my partner and she's great. She's absolutely great about it. She will always be careful. You know, she'd always, If I asked her to turn things down, she would always do it. She'd apologize if she's sniffling. If I'm really having a meltdown, she'll be very kind. She'll just feel really bad for me. She'll really show compassion.
Adeel [51:24]: Was there a problem in previous relationships?
Annie [51:33]: Ah, it wasn't it was never a problem. I was never with people were dismissive. Or if they were dismissive, they were dismissive about everything about me that was that was different. So you know, it's still just been wrong match. But no, I've always been Yeah, I've had problems before with partners because I didn't want to sleep in the same bed. And they always stick it the wrong way, you know, because of their breathing or whatnot. And And so yeah, that's been a bit shitty. You know, if I had a really bad reaction, if I would maybe stop punching myself or whatever, sorry about that. Maybe upsetting to disclose to some people, but you know, it was really bad a few years ago. Exes and exes would be a bit like, yeah, you clearly didn't want me here because you're having your meltdown. You know, whether my current partner, I think the strength is we have very similar issues. And so she she can sit through it with me you know if she can't she'll just be like i can't support you with this i'm supposed to blame you know so yeah i think last time i had people who were dismissive i was quite young you know okay but i can really advocate for myself i just don't think don't take yeah yeah no that's a good that's a good place to be um
Adeel [52:55]: So you advocate for yourself, but you don't talk about your friends with it. So is it mainly just kind of in day to day? You just kind of advocate for yourself in terms of wanting just if somebody's doing construction or whatever, just have them turn it down and say what you need to say and then get out of there.
Annie [53:16]: Yeah. It's a lot better with people. I'm really surprised now I can eat quite close to my partner. It's very rare. Yeah, I get you know, because I know I know she will respect me and it's taken a long time And and I think it's just that trust with her and it's helped me cope in general I think you know, there's neuroplasticity Neuroplasticity is a great thing and I think this is what's happening my house house triggers It's hard because Cannot I cannot get away from the triggers and how am I supposed to heal if I'm bombarded? Constantly, you know that there's coping and there's then then there's being constantly bombarded and I think that's my main beef with My situation Stale meat with your neighbors to who are not going to help you and in your that's gonna and realistically A part of me knows they're not going to stop. All they're doing is walking, you know. They're not doing anything wrong. Apart from that, they're really quiet, nice people. Yeah, so it's my issue. Because one week they were on holiday.
Adeel [54:26]: Oh, it must have been amazing. And I was a different person.
Annie [54:28]: Oh, my God. Yeah. I was a completely different person, you know. I was like, oh, I have energy, you know. So, yeah, and I think that's... I think I'm trying to keep calm and coping and just hope that at some point I'm gonna make make you know reach a point when I can have Appropriate housing. Okay, so I can start to heal and build up a More resilience. I think to me I have this theory about misophonia times you have two tanks, right and they fill up every time you get triggers and if they fill up with your coping skills. So one of the tanks is your personal coping skills. So you know, meditation, earplugs, and the other tank is what is the community doing for you? Right, your partners, your neighbors, and you know, the tank that's always full is the personal coping tank. The tank of what other people are doing for you is not really that full. And you're like parched for you're like, I need this to fill up to feel safe, you know, trauma, And healing isn't just about what you do. It's about what other people do for you. And for me, it's like, yeah, it's my issue right now.
Adeel [55:44]: Yeah, no, it's an interesting way to frame it. It's like, yeah, we can, I think we all talk about our personal coping mechanisms, but there's this whole other outside world, the external side, which...
Annie [55:59]: um we can't control and if we're not getting if we're not feeling safe around it if we yeah this is making us feel threatened then there's only so much we can do there's only so much better exactly yeah and and how do you decide you know how do you decide what other people should do for you how do they decide it you know this is this is a conversation we cannot have because this is just not the systems we live in you know everyone's just trying their best to live their own life you know so there's also that i mean i'm not i'm not just blaming people around me i'm also aware that this isn't the system we live in you know we don't live in in that kind of community setup right right where everyone's educated and and and self-aware and what have you yeah so i'm also aware that you know yes self-awareness that has come up a lot um well
Adeel [56:55]: Yeah, absolutely. Yeah, I mean, we're coming up to an hour. We don't necessarily have to stop right now, but I definitely am curious if you have anything else you kind of wanted to share. You have a lot of very original insights that I don't hear that often. So this has been amazing already.
Annie [57:10]: Really?
Adeel [57:10]: Oh, thank you. Yeah, is there anything else? I don't know. Do you want to tell people that they may or may not have heard before about Musefani or any great realizations, more realizations that you've had?
Annie [57:24]: no no more realizations i'm good uh no i i really i don't
Adeel [57:30]: things so um and people can would you mind if you i mean i know i'm going to put links to in the show notes to your stuff but uh i've heard you know that people have come on the show and then they've heard from other people who've been on the show or heard from the audience people listening um you do you would you would you mind if people just kind of reached out to you maybe yeah i know there's a lot of people in the uk too just kind of ask questions or or whatever yeah okay cool
Annie [57:57]: I'm very happy. I'd love for people to reach out to me. Oh, if you have zines to send me as well, I'm happy to swap zines.
Adeel [58:04]: Yes, well, Kyle, I know Kyle in New Orleans, he's an art teacher. He writes zines. He's got an Etsy, too. So, yeah.
Annie [58:14]: Yeah, we all have Etsys now, all the zine makers. That's how it is right now, these days. No, no, I don't think so. I know some people said that their dogs flickered them, and I mean, you really, like, panic. Because my dog, yeah, that's completely unreal. I think my dog is very anxious and sensitive to sound.
Adeel [58:35]: Oh.
Annie [58:36]: My partner, yeah. And so we totally mirror each other.
Adeel [58:39]: Yeah, yeah, yeah.
Annie [58:41]: So it has a sound like freeze and we have to listen to it, you know, like where is this coming from?
Adeel [58:46]: Is your dog able to recognize when you're maybe going through an episode or a meltdown and come in and try to help you?
Annie [58:54]: that's a whole other topic. But yeah, he recognizes it. And he's not a therapy dog. He just breaks it. He hates it. But it's been quite insightful for me, actually, it's been a good mirror to what's going on for me. And it's been a good way to access, access this very vulnerable part of myself and being like, Oh, my God, you're not okay. You know, are you all right? You know, as opposed to you know, it happens on such a subconscious level that you judge yourself instantly, you don't even know you're judging yourself, you're just mad. And then it takes a lot of work to kind of, you know, some of the stuff I did when I was doing transactional analysis and ego states was using teddy bears a lot. So if you look at a teddy bear, they just have this kind, non judgmental, for me anyway, I have a lot of different bears I use. And, and it's just, you know, if it's safe to do so, get in touch with this vulnerable side of you that is scared and soothe it. If it's safe to do so for you, sometimes it's not safe. It's not for everyone. Absolutely not. But that's my only kind of advice, I guess.
Adeel [60:03]: It's very cheesy. I'm sure that'll help a bunch of people. I have dozens of stuffed animals in my house with two daughters right now. So maybe I'll take a look at them in a new way. but uh yeah it's different when you're a parent i think i heard i'm not a parent so they won't mind yeah oh cool man but yeah that i think no i don't think i have anything else yeah yeah that's yeah well any of them let me say uh yeah thanks for thanks for coming on it's been super interesting uh i i'm gonna immediately go to your at sea right now and and check things out um but yeah um yeah thanks for coming on oh fantastic yeah it was so it was a pleasure thank you Thank you. A really fascinating conversation where I learned a lot. And thank you for sharing so much of your story. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. Hit me up on email at hellomissifunnypodcast.com or go to the website, missifunnypodcast.com. It's easiest maybe to even just send me a message on Instagram or Facebook at missifunnypodcast.com. and or send a DM on Twitter at This Is What You Show. Support the show by visiting Patreon at patreon.com slash This Is What You Show podcast. The music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [62:03]: Thank you.