Isabel - Navigating life and career with misophonia

This episode features a conversation with Isabel, a young woman from London who has struggled with misophonia since childhood. Isabel shares her journey of recognizing and understanding her condition, detailing the challenges it has presented in her personal life, in educational settings, and in the workplace. From the early days of being triggered by her brother's actions to the difficulties faced in quiet environments like bookstores, Isabel's misophonia has impacted various aspects of her daily life. Despite these challenges, she discusses positive developments such as finding a more understanding therapist, and the relief that came with learning misophonia had a name. Isabel emphasizes the importance of honest communication about her condition with friends and family, who've become more accommodating over time. She also expresses a desire to work in publishing, particularly focusing on issues like misophonia, and hopes her condition won't hinder her career aspirations.

Adeel [0:01]: Welcome to the Misophonia podcast. This is episode 24. My name is Adeel Man, and I have Misophonia. This week, I'm bringing a conversation with Isabel, who lives in London, England. She's in her early 20s and has had miso from a young age, like most of us. It's really accelerated, though, in the last few years, but she's also recently found out what it is, like most of us, and is taking steps to deal with it. She's also at the beginning of her work career, and so we talk about being at the beginning of your career and knowing you have me, so, and what she hopes the future holds. You can tell by listening to this episode that it was recorded in pre-COVID-19 times. It's the last of that batch of interviews. The next episode you'll hear hasn't even been recorded yet. Speaking of COVID, I hope everyone's hanging in there and taking advantage of this time away from other people's sounds as at least one positive thing from this. I've actually had a past interviewee reach out and want to share their MISO experience during lockdown, so I might bring that. If you'd like to talk, just hit me up via email, hello at misophoniapodcast.com or send a message on Instagram at Misophonia Podcast or on Twitter at Misophonia Show. Now here's Isabel. Welcome, Isabel, to the podcast. Good to have you here.

Isabel [1:27]: Thank you.

Adeel [1:28]: So, yeah, as you're a listener of the podcast, so, you know, I usually just kind of like start by asking, you know, whereabouts are you and what kind of what you kind of do.

Isabel [1:41]: So I'm in London. I'm 23, so I graduated last year. And since then, I've worked a little bit in the publishing industry through internships and a temporary role. I work as a bookseller at the moment, just in a bookstore for the Christmas period. Yeah, so that's me, I guess.

Adeel [2:02]: excellent yeah cool um and uh yeah and i guess uh so listeners don't know this but you you just had like a interview earlier before this um so i guess you're you're you're looking for a job so let's start by talking about kind of your your recent kind of work environments and how um how they've been for you

Isabel [2:23]: I mean, it is always difficult. There's always these invisible barriers that, for me, I think they stop me from doing things as well as I'd like to. It's quite hard whether it's in an office and you're on a computer and people around you are triggering you and you've just got to pretend that everything is fine. In my old world, sometimes I could just put in headphones and everything would be all right. Being in a bookshop, though, it's a lot harder because... you can't do something like that. You're in a customer facing role. And I, I feel like if I actually responded as I would like, as I typically would to triggers, people would just think I was insane.

Adeel [3:05]: And I went out of the store. And I guess in a book, there's kind of like a library where you have to be extra quiet. And so those triggers are just kind of extra deafening when they happen, I guess.

Isabel [3:20]: Yeah, that's probably the hardest part because everything is just so heightened. Like I've worked in restaurants and cafes before where there might have been loud music playing or there might have been really loud clanking or maybe the dishwasher was behind me or whatever it was. And it would drown out those noises. I mean, there would be visual triggers, but I could... pretend I was looking really hard at my screen or something as I was normally on the till. And it would just be a lot easier to avoid those noises. So even though books are a lot more interesting for me, it is a lot harder to actually be in that environment.

Adeel [3:53]: Any chance to blast any terrible Christmas music in the bookstore?

Isabel [3:58]: There was one day when we had a Christmas event in the evening. It was really great actually as they had live music. They were playing Christmas songs and someone was actually playing the saxophone over the top of it and it was such a relief. But normally there isn't really anything playing. I'm hoping, as it's the week before Christmas, I'm hoping they will start doing that. But it doesn't seem like the sort of place where they would.

Adeel [4:22]: Gotcha. So, um, yeah, so you're, so you're 23. So, um, I guess working, working, I guess we might as well go way back. Um, when, when are your kind of your first rough memories or around when, when you realized you had something, something was off?

Isabel [4:38]: I mean, it started when I was really young, actually, although it wasn't that severe. I remember being maybe eight or nine and my brother used to, who's very similar in age to me, used to like belch a lot and he found it really funny. When I was six or seven, I found it funny. And then as the years went on, I started getting increasingly angry with him and kind of screaming at him to stop. And it obviously seemed like I was just being really unreasonable. That's the earliest memory I have. But things got significantly worse when I was maybe 11. and getting seated next to particular people in school who might make a very repetitive sound and gradually those sounds would start to trigger me. Things became worse throughout secondary school and it made it really hard to concentrate actually.

Adeel [5:30]: Did it start to affect your grades and whatnot?

Isabel [5:34]: It did. There was one lesson in my English class when I was about 16 where it got so bad that I actually just had to wear earplugs for most lessons and just kind of hope that the teacher wouldn't call on me. If she did, I'd have to react really quickly. But I ended up just teaching myself a lot of that course, which wasn't too challenging as English has always been my strong point. But it was... I think it was a detriment on my grades, especially in exams. That was really hard.

Adeel [6:07]: Yeah, yeah. Exams come up a lot in these episodes. So that's interesting. So your brother was kind of your first trigger, and it was actually something that you found enjoyable at first, and then it flipped at some point. Was it gradual over the years, or were there, do you remember, like a short period of time where it might have flipped?

Isabel [6:32]: I'm not sure. I think I was probably around nine when it flips. I think maybe with the increased frequency, I just started to think, oh, no, actually, I really don't like this noise. But the more I react to it, the more he does it because he just found it quite funny. I mean, I didn't actually open up to my parents about how bad this was before. years because I thought everyone would just think I was crazy. I thought I was crazy before I knew what it actually was. So I just kept it to myself.

Adeel [7:03]: How did you react? Did you bottle up or did you, I don't know, punch him?

Isabel [7:10]: I think I got quite angry when I was a kid. When it first started, I would yell at him to stop. I mean, because it gave me that feeling of just wanting to run away, wanting to cry.

Adeel [7:23]: Fight or flight, yeah.

Isabel [7:25]: Being really young, I didn't know how to express that. Now, I guess I'm an expert at suppressing it. So I don't express things as much anymore.

Adeel [7:36]: Did your parents notice it at all?

Isabel [7:39]: I think they just thought I was trying to get at him. When we were kids, we used to argue a lot. So yeah, that was a big thing for us.

Adeel [7:48]: And did your triggers expand to them at all, your parents? Or did they start triggering you?

Isabel [7:56]: They have a lot more recently in the past few years, which is probably the worst part that everyone that I care about. does have a trigger that affects me in different settings, whether it's eating or maybe a sound from the other room. It feels like any situation with family, I'm having to really focus on how I'm going to navigate it. It stops you from actually enjoying the presence of people as much as you'd like to. And I'm sure that's very common for a lot of people.

Adeel [8:27]: Very. But you've chosen kind of like to just kind of hide it from everybody.

Isabel [8:34]: um now i'm a lot more honest about it with my family and my friends so my family are often really sensitive and my friends are brilliant as well they've um like researched the condition a bit once i actually try to explain things for them um i used to just hide it um as much as i could um say on In secondary school, we would go on theater trips. I studied drama when I was 16, 17. And the noises in the audience were just awful for me. And I would just hope that I wouldn't like start crying and that my friends wouldn't notice. But as I've got older, I mean, in my adult life, I've actually been able to share stuff with my friends and they've all been brilliant. And my family have been the same.

Adeel [9:21]: That's amazing. That's great to hear. And did you, when did you find out that it had a name?

Isabel [9:27]: It was completely by chance. I was about 15, 14 maybe, and I used to go on these websites about weird facts and stuff like that. And one of them was, oh, there's a condition called misophonia that explained that it's a hatred of certain sounds. And I thought, oh. that sounds interesting and so I googled it and I was like oh my gosh this is me and then my life just completely made sense and it was such a relief that it was actually a condition.

Adeel [9:57]: How long ago was that roughly?

Isabel [10:01]: That was about seven or eight years ago maybe. Yeah I didn't actually tell anyone about it for a while it was a good few years and I think my family were generally just still quite confused about it because I was a bit scared of actually saying, this is a condition that I think I have.

Adeel [10:24]: What scared you about that?

Isabel [10:26]: I don't know really. I've always been quite withdrawn, I guess, and I don't really like the attention being on me and I thought, oh, it would just be a thing that makes me stand out and my family will think it's a bit weird.

Adeel [10:41]: yeah and every time you walk in a room people will be you don't want them like staring at you wondering if you're being triggered so as you were getting more triggers um did visual triggers also come up too other than auditory oh definitely um i mean since i had to basically live

Isabel [11:01]: most of my life in headphones I feel like the condition basically found its way of just worming itself into every aspect of my life so being in really crowded places is very difficult it's often the noises it's often the movements that I associate with the trigger sounds and it gives me the exact same feeling that the sounds do now which is quite sad it feels like nowhere's really safe anymore yeah it's like just another thing to worry about

Adeel [11:31]: Yeah, so it's an interesting way to put it. It's creeping into your other senses. So even if you've got headphones on, if there are visual triggers or movement triggers, that's, I guess, the definition of mesokinesia, your brain will associate that.

Isabel [11:47]: Yeah, I mean, it makes things like public transport just unbearable. I used to be able to zone out on my way to work or whatever, school. But now, I mean, in my last job and in my current job, actually, I'm having to get the train every day. And being in that really crowded environment, I've got my headphones as loud as they will go and my eyes closed. And it probably looks a bit strange, but I really don't care. It's just about surviving that situation.

Adeel [12:15]: yeah i feel like yeah tube trains they they shouldn't have they should maybe have the uh chair benches pointing out so you can look outside instead of looking at the other freaks on the on the on the train yeah um and so yeah so you do so you do headphones and you close your eyes uh are there any other kind of like little habits or tricks or coping mechanisms that that you've come up with

Isabel [12:40]: um sometimes i find that rubbing my thumb against my forefinger kind of helps me to focus my attention on something else um it's something that i do to just kind of manage that anxiety obviously it doesn't actually stop the physical response or anything but it is something that i've managed to take a bit of comfort from um other than that it's mostly just avoidance like at work i'll make a make an excuse to like go into the back room and say I'm like checking on the stock or whatever it is. Right. Just to get like a minute of like respite from all those noises.

Adeel [13:19]: And employers, if you're listening, this is a good thing. You don't want to have your employee freak out. So let them go back there, whatever they need to do. And do they give you, so accommodations at work come up a lot. Have you had to talk about this with any of your past employers? I know you're relatively young, so you probably haven't had a ton of jobs experience, but.

Isabel [13:40]: No, employers just have no idea. It's something that my friends and family know about, something I share tweets about sometimes and articles when I see them. But it's not something that I've ever actually disclosed to an employer. So I feel like just the whole having to explain what it is is really difficult, actually. I find it so hard to actually sum up what the condition is. Online, it's a bit easier as you have, say, a good article that breaks it breaks it down really well and articulates it in a way that I probably couldn't. It's just not a territory that I've actually gone into with employers.

Adeel [14:19]: Yeah, it's weird. It's one of those things that's so clear to us, but then when we open our mouths, it's like, how do I make this not sound weird or just trivial? Because everyone gets annoyed by sounds, but you've got to explain how, okay, it's much, much different than that.

Isabel [14:37]: That's a response I've had so many times, actually. When I was really young, not really young, but when I was in high school, maybe 15, I did try and try explaining it to one of my friends who didn't really have the understanding at the time and she said a lot of people get annoyed by sounds and I think the impression was that I was kind of making it up for attention so that scared me a bit and stopped me from actually like talking about it because I just found that I couldn't articulate it I found myself going like so I know no one likes the sound of whatever it is but For me, it's different and it's so hard when they don't have that experience to actually explain what it's like.

Adeel [15:20]: Yeah. Yeah, a lot of us have run into that. That's very common too. And what kind of other reactions were you getting from friends or family members over the years?

Isabel [15:35]: My parents were worried at first. I think my dad took me to the doctor.

Adeel [15:41]: Okay. So he took you to like a audiologist or like a therapist or?

Isabel [15:44]: Just, um, our GP. Um, it was, um, it was a negative experience. I mean, he was there trying to explain, like, she looks like she's actually in pain when she hears these noises. And the, the doctor just said, um, well, no one likes these sounds. And I just got a very dismissive response. Yeah. So that really made me quite scared. And then, I mean, a few years later, I spoke to a doctor about it and they tried me with like CBT, but obviously a lot of the time that relates to exposure therapy and things like that. And it just wasn't right for me because the issue was that I was exposed to those sounds all the time and it didn't stop me from getting that reaction.

Adeel [16:34]: God, it's not the CBT cognitive behavioral therapy, right?

Isabel [16:37]: Yeah.

Adeel [16:37]: Yeah. Yeah, and what did your dad say after that initial experience with that first doctor?

Isabel [16:45]: Well, I can't really remember. I mean, we were both kind of disappointed, I think. Like we were kind of hoping for a bit more enlightenment on what was actually going on. But I spoke to a therapist a lot more recently who had actually heard of the condition and was really understanding and really brilliant about it. So it's not been all bad.

Adeel [17:13]: This is a local one in London?

Isabel [17:17]: Yeah.

Adeel [17:18]: Gotcha. Okay, cool. And has that therapist been able to help in any coping mechanisms or is it more just somebody to kind of talk to?

Isabel [17:31]: It was really just someone to talk to. It was really brilliant to actually have someone who understood the condition and had actually heard of it and I didn't have to go through the whole explaining what it was. I could just kind of vent about it, which was really good, especially being someone from outside of my family. I feel like I don't want to talk exclusively to people to anyone about it, because it feels a bit like being a burden, but when it's, you know, like a therapist, it's like their job to actually... Right, right.

Adeel [18:09]: Yeah, but you'd be surprised at how many therapists don't take their job seriously in this condition. Have you met other people who have misophonia?

Isabel [18:20]: No, actually. I mean, you're the first person that I've spoken to. I have just come across people online. Yeah.

Adeel [18:26]: There's got to be a lot in London. There must be some way to... I know the UK actually has quite a bit of... When I read about, I don't know, groups on Facebook or whatnot, there seems to be a big UK presence. So I don't know. If you were interested, I'm sure there's a lot of people in London who are open about it. yeah i mean i've never met any of these people but i would like to yeah that's something that came up in uh in the past few months is like there seem to be people who are more interested in kind of doing meetups and meeting up to talk about it initially i thought i think everyone thought oh a bunch of misophones getting together it sounds like a disaster but i think uh i think i think there's uh there's a lot of comfort that comes with hanging out together so yeah i think just people having that awareness of like other people's potential triggers um everyone would be really sensitive i think in that situation just having that understanding there it is it's interesting yeah to kind of be on the other side and try not to trigger other people um i know here in the states we have uh some email groups we got some we have like a couple weekly um conference calls that happen it might be interesting to set up um i don't know maybe we can talk offline or figure out how to get that happening in europe That's interesting. So in, so did it affect, so going back to just kind of high school, I was just curious about kind of like social life in high school, you know, before you maybe knew what it was or you were telling many people, you know, was it affecting, I guess you said you were kind of a withdrawn person anyways. Do you think that's kind of, was kind of related to your misophonia or kind of, did that start it or was it a consequence of it?

Isabel [20:11]: I don't think it was. I've been really quiet for as long as I can remember, really. I think it did just mean that when it came up, I was inclined to just keep it to myself rather than actually telling anyone about it for ages. It didn't used to impact me the way that it does now. I remember I used to be able to go to the cinema with friends, go for meals out without having to worry too much, whereas now I'm thinking... How am I going to get there? Is it a setting that I can actually manage?

Adeel [20:44]: So that's just in the last few years that it's kind of really accelerated?

Isabel [20:49]: Yeah, probably the last. I remember my reactions got really bad maybe seven years ago. Before then, most situations were manageable. After that, I would put up with settings that I found really, really difficult and just try not to react. But now there are just some things that I absolutely can't do. But my friends are really understanding about that. So we usually work something out that isn't going to be really triggering and detract from us actually enjoying each other's company.

Adeel [21:23]: What were college years like?

Isabel [21:27]: Oh, that was hard. I tended to avoid lectures or just kind of stand at the back of the lecture theater so that I felt like I could get out the door if it got really bad. I studied literature with creative writing. So we had mostly seminars rather than lectures, which was a lot better actually as I didn't encounter anyone actually like eating in class or anything like that. So that was quite lucky. sometimes it would be quite hard actually if we were on the ground floor and I was near a window and I could hear say like I mean coughing is a big trigger for me if I heard someone go past and like cough outside the window that would be really awful but things weren't Too terrible. I think I was a bit more cut off than students normally would be, as I did kind of live my life on campus, wearing headphones pretty much all the time.

Adeel [22:28]: Did you have roommates?

Isabel [22:30]: No. I mean, I had flatmates, but I had the room to myself. Yeah, things weren't really bad in the flat. I just spent a lot of time in my room, I guess. But none of my flatmates actually triggered me at all.

Adeel [22:47]: Oh, wow. Lucky you. That's great.

Isabel [22:49]: Yeah.

Adeel [22:50]: And did you have to, you know, being in literature creative writing, did you have to like listen to somebody, you know, read their work and you're just like, just drink some water, please. Or was it generally fine? Like it was more writing and then kind of like silently reviewing other people's works?

Isabel [23:11]: generally it was all right actually we were quite like engaged with each other reading out extracts and getting involved with discussion giving feedback but um i it got to a point where i felt quite safe in those classes because there were just very rarely any triggers so it for me i was i was lucky that it didn't affect that area of my study

Adeel [23:34]: Fantastic. Fantastic. Okay. Great. Um, and so how, and how have, um, so yeah, we've talked about, uh, you know, this is, I don't know when this will, this will post probably not for another few months or so, just cause I've had such a backlog. You're actually, this is actually the last recording of the year. Um, you have, you have that kind of honor, but unfortunately that means that it might not, it might not, um, post until like March or April or so, just cause there's been so many. Um, but anyways, one of the point I was trying to get to is that, um, since the holidays are coming up and, you know, you've been dealing with it at work, how are, how do you prepare for kind of holidays with family? I guess they're pretty accommodating, but I'm curious, you know, there's all kinds of, I don't know if you go to church, church is a disaster sometimes, but even, you know, family home, family meals can be a bit of a challenge.

Isabel [24:26]: Yeah, I mean, I haven't been to church in years because the last time I was in church, maybe eight or nine years ago, I started crying and had to leave early. So that just doesn't happen anymore. Having family around is not, I mean, it's difficult. They do know that I have misophonia, but I think that they don't quite understand it as much as my immediate family. Like they might think that it's, being with a lot of people that I struggle with or being with loud noises, whereas it's the very specific sounds that they do increase in frequency as there are more people with more triggering sounds. So yeah, mealtime is going to be difficult, but I tend to just kind of lean on one hand and have a hand. like subtly over my ear so that I can try and block out the noise with like my own sound. It's just kind of getting through it. It is sad that like I can't enjoy it as much as other people, but that is something that I'm quite used to now.

Adeel [25:33]: Yeah. I guess with meals, like I'm sure we think about like how do we, you know, how do I eat quickly or tell ourselves that, you know, it's just for another half hour or so and then I can run for those headphones.

Isabel [25:47]: Yeah. I'll probably find an excuse to, like, play music really loudly, play some Christmas songs or something. Yeah, right.

Adeel [25:54]: Hey, I'm really festive. Let me blast some loud Michael Bublé or something. So I guess, yeah, I guess we'll start wrapping up soon. I'm curious, just going back to the fact that you did have an interview earlier. I'm curious, like, you're still young. Like, you have... A long career ahead of you, have you thought about career paths, especially related to misophonia? Have you thought about what kind of jobs that you'd like to do, ideally?

Isabel [26:27]: I know I want to work in publishing. I mean, I'm quite interested in non-fiction around... like possibly around titles around kind of neurodivergence and different issues like misophonia that I think people just don't know anything about. I would really love to see a book like published about it coming from like drawing on people's experiences. I mean, if I was an editor, that is something that I would love to do. Um, but I, I just know that I want to work with books and kind of hope that, um, hope that having misophonia doesn't detract from that too much. I mean, it, it's challenging, but yeah, I hope I get to work with books and enjoy it as much as I can.

Adeel [27:13]: That's fantastic. Well, um, yeah. Um, Isabel, I want to, I want to thank you for, uh, for coming on the podcast and, um, um, the holidays will be long gone by the time it's post, but I wish you, wish you a good holiday and, uh, and, um, yeah. And good luck. Good luck in 2020. Thank you.

Isabel [27:34]: Thank you very much for having me on.

Adeel [27:36]: Thank you for listening. As I said, it's pretty obvious that this was recorded before coronavirus hit. I'll be going back to the microphone soon to record new interviews. I can't wait to have more conversations about Miso, especially now. Please leave a five-star review if you like the show in iTunes. Theme music this week is by Moby. And until next week, wishing you good health, peace, and quiet.

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