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Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 6, Episode 25. My name's Adeel Ahmad, and I have Misophonia. This week, I have a lovely conversation with Susie, a 27-year-old British Ghanaian novelist based in London. She came on my radar after a beautiful essay she wrote for LitHub.com about her experience with Misophonia, and I'll have a link to that in the show notes. Also, if you've been paying attention, we actually both appeared earlier this week in an article about Misophonia in the UK newspaper The Evening Standard. We talk here about the stresses and internal feelings growing up as an immigrant and ethnic minority in a new land, how past memories affect the body in the present. We talk about her writing, journaling, meditation, as well as living and working under lockdown and long COVID. Let me know what you think. You can reach out by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. Some news, actually, in case you don't know, we've launched transcripts for all episodes, most episodes. There's a few that are still to come, but you can find them on the website, misophoniapodcast.com, at the bottom of the page for every episode. They're not 100% accurate. They're mostly machine-generated, but we'll be improving them over time. It's been a great request because there are some folks who don't necessarily want to hear audio and don't like to listen to podcasts, and this is a great way to read it at your leisure. And also, I can also mention all episodes are also on YouTube, and YouTube has its own live transcription. But the one on the website, MissFunnyPodcast.com, you can just read it all in one go. You don't have to turn on captioning. If you enjoy the show, just a reminder, please leave a quick review or rating wherever you listen to the podcast. It really helps us drive up in the algorithms and reach more listeners. Thanks for the incredible ongoing support of our Patreon supporters. And that's a big part of what helped get these transcripts made. And we'll continue to do so in the future. If you feel like contributing, you can read all about the various levels that start, I think, at like $3 or $5 at patreon.com slash misophonia podcast. All right. Now here's my conversation with Susie. Susie, welcome to the podcast. Great to have you.
Sussie [2:28]: Thank you. Thanks so much for having me.
Adeel [2:30]: So yeah, I usually like to ask folks kind of where are you located?
Sussie [2:35]: So I'm based in London, South London, really far south.
Adeel [2:39]: Oh, very far south. Okay, cool. Yeah, I was just there over the Christmas break in London, just kind of with family, just doing sightseeing, but in central London.
Sussie [2:50]: Where are you based?
Adeel [2:51]: Oh, yeah, I'm in Minnesota. So in St. Paul, Minnesota in the U.S. Quite cold over here. Yeah. So do you want to tell us kind of what you do?
Sussie [3:03]: Yeah. So I'm civil servant, but at the moment I am writing full time. So I took a step back from my job to focus on publishing my first novel and finishing writing my second one. So, yeah, at the moment, just writing full time.
Adeel [3:17]: Oh, excellent. Yeah. Okay. Yeah. So I think you came to my attention because you wrote a beautiful, I think it's a blog post or something on lithub.com. It kind of came my way. So we'll talk about that eventually. But that's cool that you're working, but then you've taken some time off to focus on writing. It's really hard to find that, to juggle those. So it's great that you're able to get that time.
Sussie [3:42]: Yeah, absolutely. It's something I've always wanted to try at least as well, like just focusing on writing. and see what that is like because I kind of idealized it a bit in my head. So I'm like, well, let's see what it's actually like when the pandemic happened. So it feels great to have had that.
Adeel [3:54]: So do you want to maybe, so I guess, yeah, maybe you want to talk about, you wrote this post around November and I'll have a link to it. We'll get to your background eventually, but yeah, I'm just kind of curious kind of what led you to write that. Did somebody ask you to write that or were you just kind of compelled to write about misophonia?
Sussie [4:12]: Yeah, I think for me personally, it's been something that I wanted to, be able to be honest about for a very long time. And I felt that stepping back from work, taking time to reflect on my creative practice and what made me want to be a writer and where my stories come from, where my love for storytelling comes from as well. I felt like definitely, I'm probably going to mispronounce it as well because I've not even spoken about it aloud like this ever really properly.
Adeel [4:40]: You're not the first one. Yeah. Many people have come on and said that same thing.
Sussie [4:45]: yeah but yeah i felt like i wanted to get to a point in my life at some point where i would be able to reflect on that aspect of my human experience and it is life because it's been part of my experience since i was very very young so it was kind of the elephant in the room with me i wanted to write my first personal essay type thing um about that very personal space in my life And it was quite tough to do, putting it into words. So I kind of went meta and just said, well, this is tough to write about, which is kind of a cliche thing for a writer to do. But it was great to be able to get it out there and to, yeah, now it's there. So I can kind of have that to reflect on and other people read it perhaps and connect to it as well. And people connected me to you as well. So, yeah, finding more of a community around it too.
Adeel [5:40]: Yeah, absolutely. And what I really liked about it, it wasn't just, you know, just another article that explains that, you know, it's this extreme annoyance with sound, but you kind of like, I don't want to sound cliche, but you give it a more kind of poetic, a little kind of a deeper exploration of it, which I'm always looking for because...
Sussie [6:00]: because yeah there's so many more so many layers and it goes back so many years uh we have so many experiences that are shaped by it that uh it's good to see a kind of a rich kind of more emotional exploration of it yeah i think that's why i've seen a lot more articles about it especially more recently but sometimes it does feel like they're maybe covering things that might not be that helpful people who actually experienced it which has its place in its role but like some articles that will go into a lot of detail about triggers or almost sensationalizing it a bit and making it to be a very weird thing. So yeah, we wanted to approach it from a different kind of angle.
Adeel [6:45]: Yeah, I feel like there are a lot of click-baity articles that make it seem like this weird quirk or idiosyncrasy. But it's a little bit deeper than that. And it hits us harder than that on more layers. So you said it goes back to childhood. Do you want to talk about when you first started to notice it and what was going on around that time?
Sussie [7:08]: Yeah. I don't remember not having it or not being aware of it I think it's been there for as long as I like from my earliest memories in albeit in a smaller way it almost felt like a shadow that has spread and that I'm aware that it can spread which has made me go quite cautiously even in how I talk about it because because so much of it is in the head in whatever way it occurs neurologically it's difficult sometimes to separate that from the fear of how big it might become so the fear of it and the actual experience of a trigger i've been there for as long as i have been self-aware enough to to feel it but i think i never really realized it was a medical or like a biological issue until maybe in my teens uh it was a spiritual thing for me perhaps even a curse or something like the religious context And I just never found the vocabulary or found any kind of framework that could contextualize what I was experiencing or could enable me to navigate and make sense of it. So, yeah, my instinct was, well, this is a weird curse. Maybe I'll go away. Or this is the weird tangle of... unpleasant feelings why does nobody else seem bothered and is this some kind of test that i've been specially chosen for have i done something to be punished with this and yeah it was a very isolating thing when i was very young so i think i realized very quickly that most people probably don't feel the same way because how could adults go about in a world where It's just the norm to feel so uncomfortable a lot of the time. I realized that, okay, I'm kind of on my own in this. Yeah.
Adeel [9:02]: So do you don't remember a time when it wasn't bothering you? Like a lot of folks remember that, oh, well, my parents started to annoy or, you know, it started to start with my parents or something at the dinner table. But for you, you don't remember a time when it wasn't a problem?
Sussie [9:19]: I don't remember a time when it wasn't. I think as well. I don't remember a lot of my like very early years, like maybe I blocked some of it out, but my, I think probably I remember it as a much smaller annoyance and like there are maybe one or two triggers that I was kind of thinking, okay, well that's an issue, but I can just avoid that. It's no big deal. And then it kind of spread and I realized maybe when I was about six or five that, okay, this is a much more complex beast here and it is a dynamic thing. It's going to grow. And it's not just something that's going to be scary. It will also make you feel other things that I don't understand yet. And yeah, it was quite scary to go through that at a young age. But it felt normal in a way because I didn't know what it was like to be completely comfortable. There were always things I would avoid. And I think I expected that they would fade rather because adults and... My older siblings seemed much more chill. I was like, well, probably I'm just going to come through this and I'll be like them eventually. But it sadly got worse. Yeah.
Adeel [10:30]: Yeah. How did you express it as you were starting to feel these things? Do you lash out or just kind of bottle it up?
Sussie [10:40]: So at first I did try to negotiate and explain things. but it quickly learned that that wasn't going to work. I think as well, my family, the approach is very much, if something is tough, best to face it head on and get used to it because the world is tough and you have to fight for a space in this world. So I remember mentioning like the trigger was bothering me when we went on holiday together and my family's response was, okay, well, let's all do it together now. Like, let's do it loads more to make her get used to it. And I was just like, oh no, they just don't get how awful this feels. And I also realised that telling people about it can be counterproductive. I was really young when this happened. I think it made me go quite into myself and become very determined to survive on my own, almost take pride in being quite self-sufficient.
Adeel [11:36]: Yeah.
Sussie [11:37]: Yeah.
Adeel [11:38]: like telling people can't help if they're receptive to it but it can also leave a scar and you kind of can kind of go inwards because uh you know a lot of especially um you know maybe uh older we've had a lot of these experiences where we've tried to tell people and maybe we get shrugged off and eventually we just kind of like don't have the energy to to kind of like um to kind of share and so yeah we we just learned to become more self-sufficient and looks like you learned that at a young age You said something about earlier, maybe a lot of stuff was blocked out at that age. Was there anything particular that you were trying to block out?
Sussie [12:14]: I really can't remember. It's only more recently. I think it was a very difficult time growing up because my parents were from Ghana, so the time where we lived in Barnet as well, which is a borough really, really far north in London, we were a really visible minority. so i already felt a bit like okay this is gonna be an interesting childhood and i'm gonna have to be really careful and i had some very early experiences of racism which made me feel like an alien already so to have um these other experiences as well i think i did get through my early years by just hiding a lot and by blocking out a lot of things that were difficult i've had a lot of like imaginary um spaces in my in my head and in friendships as well we were going to like imaginary play and that was almost where real life seemed to be happening and it's almost like my early memories are brimming with the more vivid and positive stories that we told in the games that we played through rather than the material condition the real circumstances that was in i think it also felt i shared a room with younger brother and older sister so it was very intense like i couldn't escape someone always had a cold the mum was always doing something annoying and i would go into the garden we're lucky that it had like a massive garden it was really beautiful and i loved just going out into the garden sometimes when it was a bit too much and i think that's where i really found my refuge and i still to this day i'll go out into like a big park or somewhere that's got that sense of um openness just beyond the sky open sky and being a bit distant from other people in a confined kind of way. That's where I found my safety as a kid and my memories, yeah, were of being outdoors or the imaginary. realm and playing and being creative in those happier moments, I think, more than the reality.
Adeel [14:17]: Yeah, that's interesting. So you'd moved and, you know, unfortunately you were having like too many people like running into these difficult experiences and wanting to kind of like kind of created your own imaginary spaces in your head. Like a lot of us, you know, we get away and we try to listen to music. And I lived in headphones, like I think you said in this article. And then and then, yeah, but also then sharing Were your siblings kind of your first triggers? And I can see how that would, you know, when you're trying to cling to this imaginary space and then having it perturbed, that could cause issues.
Sussie [14:54]: Yeah, probably were. And I think I've read in a few cases as well that people say that when a trigger comes from a loved one, it feels like a double attack. It feels so much worse. And that was really horrible because I did want to be a lot closer to my siblings growing up, especially as we literally shared a room. But there were times when I just could not and also couldn't explain it as well, which was really frustrating. I think I was a bit of a people pleaser as a kid as well. I really wanted to be nice and to be liked. And that's difficult when I just couldn't stand to be around someone for a really long time. So I did struggle with that. But I think like certain like i could get my sister to tell me my brother had fallen asleep so i knew he wouldn't make a certain noise because we were like on the bunk bed and he was on the bunk below me and i would say like let me know when he's asleep and i would just be covering my ears until she would kind of wave from the bed and say yeah he's gone you can you can chill out a bit more now yeah yeah but um there were ways in which we did they did support me and we did have a bit of an understanding Yeah, that helped a little bit.
Adeel [16:06]: Did any of them ever develop misophonia as well, or show signs of it, or has it just been you?
Sussie [16:13]: Potentially. I don't want to go into too much detail for them, because I think they're also still on their journeys with other things as well. But at the time, it was me, just on my own, going through it. And there wasn't so much... Maybe because we didn't have the internet until a bit later as well, but there wasn't so much of a... Yeah, the vocabulary or the framework of even like mental health challenges as well. It was very much like, oh, mental health is a Western illness. Kind of just like topping up that narrative at the time. But I think it's much better now. There's a lot more discussion, much more of a vocabulary to talk about these challenges.
Adeel [16:49]: How were things at school around that time? Were you also being triggered at school?
Sussie [16:54]: Yeah. Looking back, I don't know how I survived. I look back and I'm like... I went to a book club because I love to read unsurprisingly I went recently the other day and I was just so aware of all the fiddling and all the little things that were just driving me insane I was like how did I get through school now I think as well it probably has gotten worse and when I was a kid at school I think the belief as well almost in a way ignorance was bliss because I believed that things would get better and I believed that an extent with some kind of christian guilt as well i thought maybe i'm being punished or tested and if i'm really good student i'm really good daughter things will get easier and there's a lot of talk in the pentecostal tradition that i was raised in about the mind kind of rising above like the flesh or the body like body being kind of doomed anyway and the spirit being like the real pure human uh humanistic space what I mentioned where life happened so I was quite comfortable accepting hardship we're accepting things being difficult and almost saw that as a sign of well this is a sign that like the future will be better or that uh I'm gonna learn from this or I expected some kind of compensation maybe so it made the really tough part easier to bear at the time Yeah, but it was horrible.
Adeel [18:26]: You thought it was kind of as a potential gift to kind of rise above it in the future?
Sussie [18:32]: Yeah, in a way. And I also felt almost like I deserved it. We're all fallen creatures, so of course life on Earth is going to be horrible and full of suffering. And again, being an ethnic minority as well in the area where I was, it was like, well, you're surprised that life is tough. There's so much worse stories. I was just really aware of other ways in which people suffered that And being reminded of that as well, I think, made me have a bit more distance from my own immediate pain, if that makes sense.
Adeel [19:07]: Yeah, yeah, yeah. And for other, like, non-sense stuff, were you, was it all, you know, I was also raised in a pre-religious... uh, childhood. So there, yeah, a lot of that, there's a lot of, um, you know, guilt was a great, um, uh, tool for getting kids to do stuff. Um, was there a lot of kind of like guilt and shame, shaming that, uh, in general in your, in your childhood? I don't want to like parent blame or, or, but I'm just, you know, in general, maybe in your, in your riddle, religious, um, uh, childhood. I'm just curious if that was a part of life beyond just misophonia.
Sussie [19:43]: Definitely. Definitely. And it was almost, uh, a beautiful thing it's like oh we're all fallen and guilty and horrible but yeah salvation there's hope so there was yeah compensation in an afterlife or in a future or a sense of supper suffering being uh balanced out by some something else and yeah the sense of the physical experience being only one side of the story definitely helped and i almost felt like Because I never really felt like a child when I was a kid. I was quite precocious, but I was also very careful to keep that hidden. I was very distant from myself because very young I learned that, okay, I'm going through some horrible stuff that no one else seems to experience, so I've got to be the one to always be looking ahead. It's very hyper-vigilant, like look into a room. If I go into a room, I've got a strategy of like, where is a safe space to sit? Which person is likely to make trigger sounds or whatever? What am I going to do? Like, how am I going to sit? At what time can I take a toilet break if things are too much? I would be calculating everything. Sometimes I would even plan like, okay, I'm going to have like this imaginary adventure in my head when the time gets to this, to just like distance myself from the surroundings. So I always felt a bit, yeah, it was almost like a game reality because I felt like, well, my body is just this temporary state. So it's tough, but there are some ways to get through it. And in the long term, maybe there'll be a better world that we'll be able to live in.
Adeel [21:15]: Right.
Sussie [21:15]: Which helped a bit.
Adeel [21:18]: Yeah. And did you... I'm curious, did you ever at some point see... professional therapist or anything for for misophonia it sounds like yeah it in your childhood like meant for many of us this is not considered serious or or mental health was not talked about so that was never on the table but i'm curious if yeah if you ever uh went to see anybody not as a kid it was only yeah when i went to university and i lost my faith everything collapsed
Sussie [21:50]: So that was, it was kind of, okay, I need help. All the little stories and narratives that I'd made up to try and get some respite, I couldn't turn to them anymore. And I was also at university, so I was far from home. I had just found the word misophonia as well, just randomly on the internet, in that comment section, I think someone was saying, oh, if you're bothered by this, it might mean that you have this. And I was, I kind of got this instinctive feeling when I saw the word. I was like, hmm. that and I hadn't thought of it yeah as a medical or as a physical neurological issue because my faith was just about crumbling and I was kind of accepting like okay well maybe mental health is a thing and maybe curses aren't a thing and maybe I need to like think about mental health hygiene and respect my body more and appreciate it more and try to make it feel more like home so yeah it was a lot at the time I think a lot of people go to university and have this moment of it's almost like coming of age time where you're removed from like the things that you might take for granted or the routines or the friendships or the family and the connections that reinforce whatever worldview that you grew up in and yeah it was very far very isolated it was very good i say to myself and i wouldn't realize that i was doing it as well that was pushing people away because i felt safest when i was by myself And I've just become very isolated at university. So I had to, I had to get help that time.
Adeel [23:20]: Yeah. Yeah. I mean, that's, I think a similar kind of thing happened to me in terms of, in terms of faith. Yeah. There's a lot of questioning around that time. And so, and I guess that, you know, questioning everything, you know, when you're an introvert, it kind of like leads you to become probably more of an introvert. And so, yeah, And did you notice your misophonia change around that time at all? Because it seems like a pretty heavy period of a lot of change. It must have been pretty intense. I'm curious if your misophonia also accelerated or changed in any way.
Sussie [24:01]: That's a really good question. That's a question I'm still struggling with.
Adeel [24:05]: You may not have because you could have just had so many other things going on that it was just a constant thing. I'm just curious.
Sussie [24:12]: It's something I find really difficult to measure because, yeah, it's that thing I mentioned about it all being in the head. So there's stuff that feels very intense and that is just very difficult to override and kicks in like fight or flight cannot negotiate with it my brain will just be like get out but then there are also some more nebulous feelings or echoes of that which is more about the anticipation of being uncomfortable or the anxiety of worrying about it or even having flashbacks and thinking like oh last time i was in a similar setup felt this way and i think reading about it and reading the word made it feel a thousand times more intense because i was suddenly very aware of it and i was aware that it's not going to go away that it's probably wired into me in some way but there's no cure that was the scariest thing to read about as well i think part of me had been holding out like okay at some point Like I'll go see a doctor about these weird symptoms that aren't completely connected. And maybe I'll have surgery and it'll fix something. Or maybe I could, I don't know, like change something. Like there must be like medication, like there are antidepressants, anti-anxiety pills that you can take. I'll probably eventually find something to deal with some of these symptoms I felt. but it was seeing the term misophonia, bundling it all together and starting to read about other people's experiences of it too, which I've not done that much since because, and I also will avoid certain articles too, because I'm, again, it's the thing about anticipating it, making it sometimes worse. If I'm, if I'm aware that, oh, some people have found this triggering or some people have also found that triggering at some point. And then I find myself thinking, how does that feel? Do I feel triggered by that? Does it feel bothersome? And that in its way can make me feel like the shadow of Miss Spaniard is much bigger than perhaps it would have been, if that makes sense.
Adeel [26:10]: Yeah, no. Yeah, I agree. A lot of people say that they do pick up triggers as maybe they... read about it or read about other people's experiences um so i won't mention too many here but uh it's like what you said about shadows and and and just kind of and so you said you obviously said earlier fight or flight i'm i'm curious like in the um you know in the in the moment uh for a lot of it it feels like we're in sudden danger and i'm wondering if um you've ever thought about try to because I sometimes try to remind myself that, you know, if I'm going to enter a situation, nothing's dangerous here. I'm not going to get jumped. And somehow that kind of calms my mind down. And I'm wondering if there is some kind of an old memory or something in some part of us that is trying to protect us. And if we can somehow calm that down, maybe it's some shadow from the past. I'm curious if you ever kind of thought about that or thought about it as a um as you know some part of your um mind trying to warn you something that's not there and if you've tried to kind of calm it down
Sussie [27:23]: so interesting definitely and i was reading as well i think as well like there are a lot of potential associated conditions and challenges that come from growing up with it and from the ways in which some of us might try to cope with misophonia like i was reading about cptsd as well like if you are exposed to repeated trauma as a young person as well like you might be more like to have flashbacks or see things as more threatening than perhaps they are and definitely with some of the situations that I've been stuck in because I couldn't as a kid I couldn't get out and having to almost just let go and say okay my body is just in absolute turmoil and I can't get out so I just have to just feel horrible for ages and it will take a while probably to feel safe again those situations I can see rationally that my mind would try to protect me from being in that kind of situation again now. So if I go into a room and I see the slightest hint that someone might do something that will make sense, I'll think that's the last time that it was the worst case. And I will probably feel quite small again, I'll feel like I was a five year old. And I was stuck in a car that my parents were driving all of it. I didn't have an iPod yet. All right. And there's no, there's no way to hide them to cover my ears. And then eventually I'll be told like, Oh, you're being rude. So I would just literally be trapped. So, yeah, I think there is a logical, so much of the condition feels illogical as well, which is very frustrating. It's like, why does that bother me? That's just a complete harmless thing. I'm not going to, fair enough, a spider or an insect or a snake, but maybe less of a spider. But it's a sound, it's a sneeze or whatever. That, for me, was quite frustrating. So I think almost knowing that there are layers of it and that sometimes Feeling something in the present can be worse because you know in the past it has been bad.
Adeel [29:27]: Right, that's a great way of putting it, yeah.
Sussie [29:30]: That understanding sometimes helps, almost. And also when I'm anticipating it, I can also feel that, okay, I'm feeling more tense, I'm feeling a bit more triggered. This is because of X, Y, Z. And even if ultimately I can't explain the initial reason why it hurt when I was really young, I think having some understanding helps. and hopefully in the future having a bit more understanding will help even more. A lot of it for me was the loss of control and not being able to understand or make sense of what was happening and therefore also not knowing how bad it would get. Like, okay, I felt like I don't want to be here. I felt like I need to do something violent or self-defense or whatever, but I don't know, like maybe there'll be a worse sound that will make me want to do something more. Maybe there'll be a sound that will make me have a heart attack. I don't know. I don't know. It's that loss of control and the not understanding that made it terrifying, I think.
Adeel [30:27]: Yeah, it's interesting. I mean, these are feelings that are natural for someone who's five years old. There's logic. You can't really expect a five-year-old to be logical, but you can expect them to not be afraid of, or not know how bad something can get. And if that's still inside you. Because I've talked to so many people who have had some past where they're walking on eggshells for a while, whether it's like an alcoholic dad or facing some kind of abuse from something else. I'm not trying to connect the dots for you or anything, but it's an interesting thing to think about that I try to just ask people, was there something in the past that maybe... caused you more than once or more than once that maybe at a chronic level make you feel like you had to walk on eggshells to not just not set somebody off. So yeah, we got to university and then yeah, you found misophonia, the term. And did you then, I forget, did you then start to see a professional? I'm just kind of curious how that journey went.
Sussie [31:34]: yeah so uh it was actually i was dating someone who had like really bad anxiety at the time so um yeah he said oh you need to talk to a therapist and he recommended everyone at university should just ask a way to explore yourself and explore your childhood and it was probably the best thing i ever did so kind of thinking about it before i found the term misophonia but that tipped me into i cannot eat i cannot like go to lectures i skipped the whole exam at some point I was just, and I was also still very much trying to keep up appearances. And I think I was quite good at seeming, because I did really well in school, in part because I knew from a young age I need to get out. I need to have my own home. I need to make hay while the sun shines. I felt like the world was narrowing and I need to be amazingly talented or successful enough to... balance out for whatever hell waited in the future so I was very intense as a student when I was younger so I was good at keeping up like appearances and I think people expected me to be okay and I was just used to protecting especially people I loved from worrying about me so yeah it was when I was I was I couldn't eat and it was at some point I was living next to a student who would talk through the night. He must have been a gamer, because he was in a different time zone or something, but he would just be talking all through the night. And I didn't even know if the sounds were actually triggering, but I was afraid that they would become triggering and that I would be trapped. And I would not sleep, and I would just go to lectures. I would just kind of go to bed, lay there. Maybe I'll sleep like one hour, and then I'll just go to lectures. Like, this is fine. Everything's fine. and i was not okay i was very um yeah very isolated and very nihilistic i also studied philosophy as part of my degree so i wanted to do to challenge my kind of shelter upbringing and i also wanted to be right and i felt like where i need to understand they're all the like deep ideas yeah and that completely unraveled all the belief systems i had i became very nihilistic studying uh some of those modules and it was all at the same time. I was also studying like a history module or something. And it was, we were looking at genocide. It was just like all the worst of humanity. And yeah, I just had to stay on campus like quite late into summer instead of going home to my parents' place and just saw a therapist. And I would just, I'd never spoken to anyone about my childhood or about feelings, even the friendships that I had in school. were quite um we didn't go into like i didn't like being vulnerable being emotionally vulnerable yeah so we're very creative kind of like theater kid type of thing and we would play music together they're great friends but i never took my mask off completely you know so talking to a therapist like everything and that blew my mind like even that i'd never reflected on my childhood and never expressed things aloud it was very intense time but yeah i always say like if you can see a therapist did they help you at that time it's amazing not so much for the misophonia in fact i think they probably scared me out talking uh about it for a while because he'd never heard of it the therapist so it was probably around 2013 14 yeah like never heard of it and he when he the reaction when i said like well sometimes make me feel unsafe and his reaction was to like start making sounds like how does this make you feel like could you not like yeah no but i was like yeah i'm not gonna i'm not gonna try this again because obviously and i think he was also very skeptical like well you shouldn't really self-diagnose yourself with things on the internet you can't really see him things it might be this that that and i was like these symptoms are so specific and Fair enough, like there could be other conditions involved, but I just felt like I was being not taken seriously. And that was always a fear that I'd had since childhood because I had not been taken seriously as a kid and that has ended very horribly. So I just, I was, I would just put that away. But I had plenty of other issues to talk through. And I think they were all kind of stemming from the issues I had with sound because I had it from such a young age. So much of my personality was shaped around trying to survive, I was in survival mode a lot of the time. So yeah, there were lots of other issues that I had to work through.
Adeel [36:24]: Right. So, okay. So this, yeah, this therapist didn't help at all. And yeah, it's amazing. As far as we've come in just talking about mental health, like we're still at the bottom of the barrel. Misophonia is just kind of the ugly duckling of mental health conditions.
Sussie [36:40]: I'm curious about other people you've spoken to as well. I've only listened to one other episode, I was a bit cautious. But yeah, I'm curious about whether there are therapists who are a bit more, what's the word, clued in or open-minded or able to help a bit more.
Adeel [37:01]: Yeah, there are. And they always have a giant wait list because there are not enough of them. But yeah, there are. So there's a bunch of research groups at universities in the UK. There's a big community of people with misophonia in the UK. Then there are also some excellent therapists. Dr. Jane Gregory is at Oxford. She was on the podcast. I know her quite well. Actually, I saw her in Oxford a few weeks ago. Um, she has misophonia and she's one of the top researchers, uh, in, in the field. Um, and yeah, you can maybe listen to her episode and I can connect to you. Uh, there, there are a few, you know, a number here in the United States, but never enough. Like whenever I talk to them, they're, they've always got a huge wait list. Um, but I think with more, uh, you know, awareness and more people speaking up and, um, I think, I think there'll, there will be more, but, uh, But yeah, it's always hard to kind of like, you can't just, you know, go on the internet and just find the first therapist and assume they're going to know anything. You really have to do your research, your due diligence. Otherwise, yeah, it could end up pretty bad. They could really, you know, if someone kind of goes in assuming a therapist is going to know about it, it could be quite damaging. So, because if they're not taken seriously. You said something earlier when you said you weren't taken seriously as a child and it ended up badly. Are you talking about misophonia and how your family treated you?
Sussie [38:36]: Yeah.
Adeel [38:37]: Okay.
Sussie [38:37]: And I understand from their perspective as well that there's probably as well, like just the way that they dealt with stuff when they were growing up is, okay, if something is difficult, you have to learn to face it, you know, and you have to, you can't expect. the world to soften, to make room for you. You've got to toughen up. And I sometimes say, I feel like I was raised with some toxic masculinity. They're just like, no crying, just man up. I was often told, okay, you're too sensitive. How are you going to get through life? I'm like, I don't know. That's why I'm asking you, you're the parent, help me. But I think also it was tough for them, raising kids in a new environment. And with the religion as well, they gave the tools that... they had and that had worked for them. And it was always from love. But at the time, it didn't feel like that. And especially when, yeah, there wasn't really anywhere I could go. When I started getting, when I got an iPod, and when I got technology, got myself a little netbook that I used to play white noise on, that made things a lot easier, just having a way to protect myself other than covering my ears. I used to literally just press my hands with my ears to try to get to sleep. We'll hide in the toilet for ages until things are a bit quieter in our bedroom. And then also we moved house and I eventually got my own room, which helped. But then I didn't really want to come out of my room. So, yeah, it was probably tough as well, raising...
Adeel [40:07]: raising me as well absolutely yeah yeah parents are um sometimes sometimes more um um sometimes even they're some of the most desperate people looking for answers because yeah it can be quite tough for them too did did it cause um a distance and kind of like a unspoken rifts between yourself and family members
Sussie [40:30]: yeah absolutely i think as well because i think other people experience this but when someone makes a triggering sound sometimes it feels deliberate it feels like a personal attack it's like i don't know this this feels horrible how could you do this to me and when it's coming from a loved one as well and if i've also mentioned in the past like please not do that and they do it it kind of felt like, well, they want to make my life hell. They must hate me. And I could also think of lots of other reasons why they might. I was the middle, I'm the middle kid. So probably had some kind of complex about like, well, I'm not the favorite. I'm not like the younger one or whatever. But I already had all kinds of narratives. And there was a bit of like an emo thing at school when I was there. So it was very much like, oh, got no, no one understands me.
Adeel [41:16]: Yeah.
Sussie [41:17]: Yeah. There was a lot of that. feeling and as well like my parents being from ghana i felt like there was a lot that that we had different perspectives on growing up especially as my um religion faded away i felt a lot more distant and disappointed a lot of the time in some of the traditions and some of the yeah perspectives that i've been raised in and that was frustrating and i think as well would look at other people's families and kind of think would it be easier if if and it's easier to look at um yeah the what you see of other people's families and other people's homes and think would this is am i inherently set up to have a very difficult life or would it have been different if i'd had different circumstances or you can never really know
Adeel [42:14]: Yeah, that's interesting. I've never heard somebody else say that, but I had similar thoughts growing up once in a while where I'd be like, what if I'd grown up in that family or this other family? That's something, understandably, we don't say out loud because it's not pleasant for others to hear. It's not like it happens a lot, but yeah, it crosses an immigrant's mind.
Sussie [42:39]: I would say a lot that I'm really thankful to my family for because there's a lot that Like even my passion for creative writing and stuff like that, I don't know that I had been able to lean into that if they weren't so keen on us reading and being into books and my mum would take us to the theatre and stuff and really supportive on the academic side. So I'm really thankful for a lot of it. It's kind of a thing of like... I can see how misophonia has held me back and I can see all the ways it's limited me but I can also see I wouldn't be who I am without it and I wouldn't have the joys that make life worth living without it. So it's just kind of there and it's part of what life is.
Adeel [43:29]: It's funny, something you said earlier about not showing too much vulnerability and kind of being in the, I think you said you were kind of in the theater kid circle. I was never into theater, the theater kids growing up, because I was, you know, it seemed to be just what the white kids were doing. And I found them to be a little too superficial. But it's interesting now, and just in the last couple of years, and I'm like in my 40s, I've gotten really into, interested in theater and musical theater. partly because I've realized some of them are quite psychological. And just the idea that, like from Stephen Sondheim and whatnot, not necessarily like, you know, wicked or whatever. But one interesting parallel I noticed is like, you know, sometimes it seems like we're living in our own musical where we have, you know, we want to break out in song and we just have this other world, you know, dancing and singing in our head when we're going through a trigger, but we have to show kind of reality. So it's just fun that in Instinct Parallel we're in, you know, musical theatre, like there's normal life and then all of a sudden you're in the person's head and they're singing in whatever emotions they have and then they come back.
Sussie [44:38]: I've not thought of that before. That's really cool.
Adeel [44:42]: So how is, well, actually, maybe related to that, like in your own work, has kind of misophonia been something that you've expressed?
Sussie [44:52]: In my creative writing?
Adeel [44:53]: Yeah, in your creative writing.
Sussie [44:57]: No, not directly or explicitly. I think it shapes some of the characters that I write about. Like they're often outsiders or they've got something that holds them back from feeling fully present you know or fully connected with people who they might want to feel connected with so i think there are aspects but the actual um condition no i've tried to write about i found it very triggering to write about yeah and i also struggle with why am i writing about it what what kind of story is this going to be is it about documenting the experience and trying to yeah just show that okay this is part of the human condition or am i trying to explore it on a personal level i do a lot of journaling and i think more in my journaling but even when i was i started writing i didn't i would refer to it with little like code words and i would try and be very secretive in my journals and i still don't really write about it directly I think in my journaling. So I've not explored it.
Adeel [46:06]: Oh really? Even in your, even in your journaling. Oh, okay.
Sussie [46:09]: Yeah. Partly because I didn't have a word for it for a very long time. When I found the word, I did write like this rambling entry. I do this sometimes. Maybe it's like the musical thing of feeling like, okay, I want to capture, I want to, capture this moment and I remember being in tears and shaking and writing in my journal like I've just found something that changes things I'm not sure how it's going to change things but I can feel it's changing something and I want to like remember this moment so I document moments but I find it difficult to write about and I think a lot of my art and my writing is or began from trying to escape it and trying to explore worlds where it's not a barrier for me and to empathise with characters who don't have it as well and to allow myself space to imagine stories and existences without the limitations that it has brought into my life. I've not read about it much either. I've read about it in one novel a little bit, which was a bit weird to do. I find it very triggering actually to the suggestion of it sometimes. And I think maybe that's because I've not just, I've just not read about it much. I've not encountered it. I've tended to avoid it. So, no, not much.
Adeel [47:32]: Yeah, interesting, yeah. No, I'm definitely, yeah, I'm always interested in how it's potentially explored in art. I mean, there's that movie, there's that movie Tar where the main character has signs of it although they never mention it by name they never no no characters ever discuss it but um but it's used as part of her character development and that's and it's kind of interesting to me because as you know we've talked in this last almost an hour there's so many um the ways it affects us that uh over time not just in the moment but it's uh there's it's kind of a conversation between our past and our present sometimes and so it's um yeah i'd love to see it explored more well sometimes i i've
Sussie [48:14]: not sure I understand it as a condition on its own, because it feels so entangled with other aspects of my life. So yeah, it's almost like I'm not sure that I can draw it into focus on its own well enough to
Adeel [48:32]: yeah to explore it through another character or through a fictional space so writing like non-fiction thing was a little bit easier yeah i mean maybe maybe that's part of exploring it maybe over time that'll that'll come to you who knows yeah yeah um so i guess um maybe what are some of your other coping methods i guess take it to the present i guess how do you how do you go day to day now um uh I think I saw on your Instagram that you recently did a reading or something near the British Museum. I just noticed because I happened to be staying there weeks earlier. When you're doing readings, do you ever get triggered by people in the audience? Does that throw you off? I guess it's easier than if they were triggering you while you were writing. Yeah.
Sussie [49:24]: That's the beauty of writing as well is that it's quite a solitary experience. It's easy to avoid that. So I've not experienced triggers so far doing readings. And I think as well that they're quite short. So that's another thing that I've kind of retained from childhood is that sense of things are tough right now, but even if I don't believe in all the... the in quotes compensation or the the joy that might have been guaranteed after suffering there's going to be an end to it and i know like in the past things have felt that's the worst one of the worst things about like when you feel really triggered it's like ah this is the worst thing in the world i can't get out of it life is horrible and then it takes something very simple to just start to feel calm well for me at the moment anyway and like just getting away from a trigger i try to remind myself even if my body feels horrible that it's temporary. In the past, it's felt just as bad, possibly worse because I was younger and I had fewer options for safety. But it's safe. And hey, I'll get myself some chocolate. I'll get myself something nice afterwards to try to remind myself that life is nice. So yeah, I think just focusing on the temporary nature and being a bit more mindful. I started getting into meditating, which I've been cautious about because I do silence and struggle with. It's rare to find silence that is. properly silent so the idea of doing meditation or be mindful for a long time and also that you've got to be quite grounded in the present and I've survived by avoiding that by trying to retreat to my imagination more but lately I've been using headspace and doing some short exercises can help to just calm down a bit and get a sense of perspective and a sense of the full body I think exercising more as well like just getting into the body more ironically has helped more because yeah a lot of it feels like it's in my head and in the moment when there is a trigger it gets amplified by anxiety and all the connections in the past of horrible things that have happened will come surfacing so yeah i think like having more physical uh being more anchored in my body and feeling that yeah but any hellish experiences i do encounter will be temporary has helped so far and I just I think as well I tend to go to venues where I know that it won't be like too crowded or quiet or weird like I've got a good sense of what I'm comfortable with and so far I've not had to compromise on that so yeah yeah and what at the at the job that you're at the day job you were at was that uh was that remote or was that in an office Oh, that's an interesting one. So initially it was in an office. There was an open-plan office, which I've always struggled with. But with the pandemic, it did become remote, which was great in some ways. But also, again, because of not so much the misdemeanor itself, but more the worry that surrounds it, I was then thinking, am I making it worse by hiding from the things that would normally trigger me? Like, will it be extra intense when I go back out into the world? And that was part of the reason I left, because I was worried about I'd actually changed jobs as well during the pandemic. And I loved it. And I really enjoyed that space. I was working in energy and I loved it. But I'd never met the team in the office. I'd not had to experience working. in that different department before and i was a bit nervous like okay things are starting to get back to normal now how how will it be readjusting and it was a struggle even just because i wouldn't even go to the supermarket get my groceries delivered and at the same time it's the thing of not understanding how the condition works as well and hearing about some people saying exposure helps or um some people say that if you're alone, you'll notice other things that will just make things worse anyway. And I did notice sometimes I would worry. At one point I was reading and I would look at the shape of letters and think, is that triggering me? I don't know if I'm going to be okay. What if I can't read? What if the voice in my head starts to trigger me when I'm reading? And it was almost like, yeah, the anxiety around it was what made it
Adeel [53:46]: more scary even though in the present in reality i was working from home i felt safe i enjoyed the job it was just the worry that was absolutely terrifying did you do anything to to end that worry i mean you said you you took you're taking a break from the job but uh yeah is are you doing anything maybe else to kind of like try to think differently about um try to reduce that anxiety
Sussie [54:10]: Yeah, I think I started, well, it was in the pandemic.
Adeel [54:14]: Meditation and yeah. Well, yeah, I guess a lot of people, that was maybe a common anxiety in the pandemic.
Sussie [54:20]: I think as well, like some people were saying, well, COVID, long COVID, you feel a bit more anxious as well. I felt, I had COVID twice. I think as well, I was living by myself. I was just feeling very precarious. isolated again. So there were a lot of factors that I just felt like I don't know that I would be able to cope in the way that I used to, like going on the tube, commuting in, sitting in an office where you don't know who's going to sit next to you, hour to hour, doing lunch in the cafeteria. I was like, I was like, how do I survive that? And it's, I think I'm really grateful that I've been able to ease back into going out more at my own pace because of the novel. And because of, yeah, having space to work on that and having support to work on the novel so i've just been going out a bit more take a tube into london go to a cafe meet up with friends it took me a long time to get comfortable just going out like i would have a panic attack before leaving the flat and sometimes i would cancel and friends like i can't i can't meet you i'm sorry yeah and i would be like i have my hair done i'd be all dressed up and everything but i can't go out because i don't know how bad it's going to be if I'm going to feel safe. I don't remember how I coped and I've gotten used to being inside. And sometimes as well, the idea of like being a hermit writer would appeal to me. Right. Being, yeah, living in quite a rural, I really want to live by the sea at some point as well. So, but I also love being involved with policy and involved with like current affairs and connecting with the world and connecting with people. So yeah, It's good to be able to ease into that at what feels like a more sustainable pace, but there is always that uncertainty of, is this making things better or worse? If things are going to get worse anyway, maybe I should try and make the most of going out and stuff while I still can.
Adeel [56:15]: yeah well it sounds like um it sounds like the release of the book and and um maybe some of that meditation exercise are kind of helping helping you engage with the world a little bit more um do you want to talk about the book as we kind of like start to wind down a bit i'd love to hear about the book and kind of how that's going and maybe if you have anything else in the works yeah so my first novel that's set in
Sussie [56:40]: contemporary London. I used to write speculative fiction and a bit more abstract stuff, but this felt much more grounded in the world as it was before the pandemic at least. So I loved writing a novel and it's about like a kind of eclectic shop and the friendships and relationships that form in that space and around that space. city changes and as different characters come under different pressures so there's a boy who's like british ghanaian who has like a lot of pressure at home and at school and he finds refuge and inspiration in that space and there's kind of an older shopkeeper as well his wife has passed away and is struggling to stay in the present with um potential addiction and some other issues that he's going through it so Yeah, it's about what these characters learn about themselves and about the way they want the shop and the wider world to be while change is happening around them.
Adeel [57:39]: Fascinating. Yeah, I can see some maybe metaphors with misophonia and the mind, the introverted mind and the rest of the world. Yeah, it's exciting. Well, yeah, Susie, this has been a fascinating hour. It just flew by as it usually does. It's gone so quickly. Yeah, thank you again. Anything else you want to share with folks?
Sussie [58:07]: We've not touched much on musical technology, but yeah, I'm also curious about whether other people who have this condition experience music in positive ways, too, or more intense ways, maybe, than other people. And...
Adeel [58:24]: Yeah, that's really interesting. I mean, music has been kind of a big part of my life. I don't do music and technology. I don't want to talk about me the whole time, but I'm surrounded by synthesizers and guitars and recording equipment right now at my desk while I'm also a software engineer, kind of in my day job. um but yeah i mean i i sometimes think about like i used listening to music as a um kind of an escape like it like it was for a lot of people um but another interesting thing which i don't know if i ever shared but uh you know i got a lot of my audio and music uh well especially my audio um interest from my dad who was actually one of my ended up being one of my first triggers and uh Um, and you know, I used, I think I used music to kind of like obviously get away from triggers, but then also to kind of hide from a lot of the religious stuff growing up. And I'm wondering if there's any kind of, uh, I don't know if there's any relation there. Um, cause that obviously touches a lot of parts of my life. So, um, but yeah music is a big part of my life now and uh you know i don't write music as much but i'm you know i'm i've been inspired by stories from the podcast and i'm trying to think if i can um if i can uh use some of those into some kind of work whether it's uh an album or some kind of uh i don't know musical theater piece so um Yeah, something I've connected recently again. But yeah, music has always been part of my interest. And I thought it was going to be my kind of career for a while, not necessarily as a musician, but as someone who kind of like uses engineering to design music. And I did that for a while. But, you know, I'm also, you know, I have kind of a low attention span. So I kind of like went into other industries. But again, that's a whole other conversation. But yeah, music's been, yeah, just something I'm always thinking about on every level of technology and just kind of the emotions of it.
Sussie [60:21]: Yeah.
Adeel [60:22]: How about yours for yourself?
Sussie [60:25]: Yeah, I mean, I played in... a band in our church, because we had a Pentecostal church. It was one of those modern electric guitars, although I was like a acoustic and drummer and bass guitarist. And a lot of African and Caribbean people in the congregation too, so we'd have a lot of dance and really fun music times. And I think that helped me a lot in the church as well, because if I'm in a wall of noise, it's much easier than, you know, sitting in the pews with someone, like in a kind of silent... So yeah, and I used to write songs
Adeel [61:00]: But I play by ear, so I was wondering if other people have, like, an ear for music, if that's something that... Yeah, yeah, I don't know if, I don't know if, yeah, I've sometimes wondered if, like, would, where we, or we may be more susceptible to, like, perfect pitch or whatnot. I think I had, I think I did well at, like, you know, knowing intervals just from listening to them, but I don't know if I necessarily have a much better ear than a, you know, than another trained musician, just because of my misophonia. but uh yeah oh we'll have maybe uh we'll have to talk about music at another time but uh but yeah this has been great um yeah thanks again for coming on and best of luck with the book and i'll have links to that and uh and anything you write in the future i hope we can stay in touch for sure thanks very much thank you again suzy such a great conversation and good luck with everything with your writing and i'd love to talk more in the future about music and sound 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. You can hit me up by email at hello at misophoniapodcast.com or go to the website misophoniapodcast.com. It's even easier to send a message on Instagram at Misophonia Podcast. Follow me there or on Facebook at Misophonia Podcast and on Twitter, it's Misophonia Show. Support the show by visiting the Patreon, patreon.com. The music, as always, is by Movie. And until next week, wishing you peace and quiet.