Julie - Navigating life and work with misophonia
Transcript
Adeel [0:00]: Welcome to the Misophonia podcast. This is season four, episode three. My name is Adeel Ahmad and I have Misophonia. This is a show where I chat with people who are also dealing with Misophonia. Today I'm talking to Julie, a mother, a social worker, and a misophone living in the UK. A really fascinating conversation where we really get into how it affects relationships growing up and now with partners as adults. That includes the shame and guilt we feel of being a burden on others, but also feelings of being unlovable. She also speaks to her work as a social worker and how she's able to help families where she observes some possible misophonia. Find us on social media at Misophonia Podcast on Instagram and Facebook or Misophonia Show on Twitter. You can find all the links on the website misophoniapodcast.com and even contact me from there if you like. All right, let's get to this week's episode with Julie. Julie, welcome to the podcast. Good to have you here.
Julie [1:01]: Thanks for having me, Adeel.
Adeel [1:05]: so um yeah we were talking about earlier like um uh you i've had a number of people from from the uk um sound and do you want you want to tell the audience i guess yeah where you're from and kind of maybe what what you do okay i'm from a city in the north of england called liverpool um
Julie [1:24]: And people probably know Liverpool as the birthplace of the Beatles. That's what we're known for mostly.
Adeel [1:31]: That'll go away. You're stuck with that.
Julie [1:35]: Yeah, definitely. Well, you know what? We're good for a few more things. But mainly around the world, that's what we're known for. and at the moment i work as it's it's something called early help it's a little bit like social work so it's working supporting families in in them you know vulnerable families in the area and i've done this probably for about 14 years so you know this type of way and prior to that i worked in um I actually worked in an office, and I don't know how I did it. It was an office with probably about 50 people in.
Adeel [2:16]: Open office? Yeah.
Julie [2:19]: Yeah. And now I can't sit in an office with one person typing. So this is obviously a trigger that's developed over time, as they tend to do. But I'm a mother of two young adults. One's 22 and one's 19. And I live with them and my two dogs. So that's me.
Adeel [2:44]: Yeah. Thank you. Cool. And well, I guess maybe I should first ask, like, were you living with them before COVID or was this kind of like, did you kind of have to all bunk together for the past year?
Julie [2:57]: Well, do you know what? I'd say, yeah, we did in the first few weeks of lockdown, we literally were locked in where we couldn't go anywhere. So I worked from home and my two children, well, my son was furloughed, so he didn't go out. And neither did my daughter, she didn't go to work either. And at the time I had a partner who I lived with. We just recently separated just in December. I think probably a mixture of lots of reasons. And misophonia being a big one for me. Yeah. But yeah, we were all cooped up together and it was hard. I just spent most of the day with plugs in, you know, doing work at my laptop or just wearing earplugs. And, you know, the summertime is a big... It's a hard time for me, I've got to be honest. And I read... and listen to a lot of people who say exactly the same, just because of, like, outdoor noise. Yeah, you know, like, people like to enjoy the garden, which is great. But I can't do that because other people are enjoying their garden. It's a big trigger for me.
Adeel [4:23]: Right, everybody's outside on the patio or walking around or kids are playing.
Julie [4:28]: Yeah. Do you know what a deal? It's not even... It's not kids. It's just... It's really sad. This has only developed, I'd say, the past three or four years. It's just other people talking, music. Do you know when people eat outside and the cutlery on the bowls and stuff? and and you know what i don't blame anyone for doing it it's like what can you do that it's what your garden's for and we had some gorgeous weather last summer it was like scorching for um for weeks and i just was cooped up in the the in my room and i literally have to close the blinds and the curtains because life when there's a sound coming from outside. It's almost like I don't even want to speak the area from where it's coming from. It was awful. but it is for all day.
Adeel [5:31]: Yeah. Cause we, yeah, right. That's, that's interesting. Cause yeah, if you, we have the temptation of, uh, well, a lot of us have the temptation. Well, we give that glare at whoever it is, but then, uh, then that just kind of like becomes a rabbit hole where you're like, now you're even more acutely aware of, aware of where it's coming from. And, um, so yeah, I can see how you'd want to maybe just retreat. Um,
Julie [5:56]: And do you know what? Sorry to interrupt. No. I will go outside, but I have to be armed with... Maybe I'll put a pair of earplugs in and then I'll put, like, the earphones over just to ensure that I can't hear anything. And, you know, I'm actually embarrassed by that. I'm embarrassed that I have to do it. So I just... half the time I just avoid doing that.
Adeel [6:23]: Okay. So do you just, so, um, so wearing, so wearing that kind of, I call it armor as well. Like wearing, um, uh, headphones, you, you, you kind of feel embarrassed kind of being seen with the headphones all the time or, um, no, do you know what?
Julie [6:38]: It's not even not outside in the streets or going like that. What I mean is, you know, in a home.
Adeel [6:45]: Yeah.
Julie [6:46]: And I feel like people look at me, And this just isn't true at all. But it's your perception of things, isn't it? Because it makes you think irrationally. I would say that if my children are looking at me and thinking, why has she got them on? It makes them think about it then. And I don't want them to do that. I don't want them to be thinking of me. Triggers all the time. Do you understand what I mean?
Adeel [7:15]: I totally do. Yeah. I mean, that's come up in the podcast. It's like, you don't want to draw it. You don't want to, well, there's that, there's multiple things. There's that kind of shame and guilt of like always bringing this up and kind of feeling like we're burdening other people. Um, and then, but there's also like, some people have said that, um, um, you know, seeing other people notice you be bothered, like just as to your own burden and kind of is its own trigger in a way. Um, so you just kind of would rather people just, um, not draw attention to it basically.
Julie [7:52]: Yeah. Well, I'd rather not draw attention to myself. So I, I, I just rather, I enjoyed the garden and I just did my own thing. And do you know what? You sort of come to accept it, don't you? You just accept a lot of things. And I do accept a lot of things about my life that at times it's going to be difficult. But I'm not saying it's a walk in the park either because it isn't. Because when you don't externalise it, you don't internalise it, you don't know how that's manifesting to other people really as well. I think talking about my relationship a little bit.
Adeel [8:35]: Yeah, yeah.
Julie [8:38]: I would say that probably, that shame, you just nailed it there when you said that. You do carry a lot of shame and a lot of burden. And I think you just don't want to be seen as this miserable, depressed person who is triggered all the time. Right.
Adeel [8:58]: it and it's just it's probably how it comes across but you can't help it well i mean one thing i mean fortunately these days like unfortunately at least now it has a name um and you know their articles and obviously that's kind of one of the reasons for this podcast is to kind of have um a place where you can point people to and say hey look there are people who, um, you know, they're going through this in their own lives and talking about it one-on-one with other people. And, um, and, uh, so these days, luckily, um, yeah, you know, just, just putting a name on it and bringing it up in a conversation can kind of help. Like, have you, have you tried to do that with, uh, your family members? Um, and, um, do they, like, do they know what it is?
Julie [9:44]: Yeah, definitely. They do know. I remember the day that I discovered it and I was just elated. Were you? Did you feel the same?
Adeel [9:53]: Yeah. Oh, absolutely. A lot of people are like, you hear about it and then you're just Googling it constantly. You don't even sleep. It's just like, yeah.
Julie [10:02]: Yeah. It was like three days. I couldn't come down off this hike. Because I just thought that I was obviously going mad and I'd be the only person with it. When you try to explain it, it's a little bit sounds bizarre. But then when I Googled it and found it, I think it was probably around 2010, something like that. And I just ran, I drove straight down to my mum's house and told her, and I said, look mum, this is what this was all my life. And she was upset really, because she, she sort of understood when i was younger but didn't as well didn't get get it to the extreme because i'm like 49 i'm nearly 50 so if you think back to when i was young like eight nine when it started um i i i did try to say i think but mainly i just kept to myself I don't know whether it was if that's like an age thing or nowadays children would would say you know stop doing that or stop but I and I sort of didn't say that as I don't remember ever saying that I just remember actually being just so um so wound up so triggered um I'll tell you what my first trigger was it was we had a piano we had two rooms and we had like what you call a parlor. So we had a piano in the parlor and I've got two older brothers and they were just really musical and taught themselves the piano. And that piano just became, I think that was probably my first trigger around about seven and eight. And I just hated it. And you know, we'd sit down to tea and I knew that they would get up to want to go after tea. One of them would get up and complain. So while I was eating tea, I was just thinking, oh, they're going to go in there. And it was just, it was horrendous, really. Because, you know, I don't even think there was such a thing as earbuds, or I didn't know about them. So I used to just spend a lot of my childhood with my fingers and ears. But they really pressed in hard, you know. Yeah. And it was just... i ended up one day and it was a lovely piano and i got a stick and i just bashed the piano every key a chip the edge of every key can you imagine wow i know and how i explain that to my family i just don't know um i got like told off um to say the least but i i just i just lost it one day just thought this is making me miserable this like like i really just didn't want to be here sometimes and i remember that as like a young child um and then just more triggers started and you know bless me mum it was her when she like chewed gum and chew gum along. And that's very common, isn't it, for us?
Adeel [13:31]: Absolutely, yeah. Parents and gum chewing, eating. Yeah, really interesting. So was your mom the first trigger? Or, sorry, the piano was the first trigger, right? That whole ritual. Gotcha. Around what age did you try to destroy the piano?
Julie [13:53]: I think I must have been about eight.
Adeel [13:55]: Okay, so it had been going on for maybe a year or two. Yeah. Yeah. Did anyone in the family notice? You're sitting there at tea just kind of with your fingers in your ears, probably glaring at people. Did everyone ever ask what's wrong?
Julie [14:16]: Well, do you know what? The food, eating at the table didn't bother me at all. okay no so and and it still doesn't say touch wood it's not one of my triggers okay i'm gonna knock on wood too yeah yeah i'm just thinking julie why did he just say that but it didn't it was chewing gum and there's my mom yeah but when what i mean is when i put my fingers in these i just go upstairs to my room and just put my fingers in there.
Adeel [14:48]: Okay. Gotcha.
Julie [14:50]: So when I was going to sleep, the television then downstairs started to be a trigger. So I'd just sleep every night with my fingers in these. And my arms would pain. I remember it. And I do remember asking my parents to turn the television down. But that's not such an uncommon request, really. Can you turn the television down a bit? But it was other things that saved We'd be lying in bed and I'd share a room with my sister and she'd have her little radio on, which is just lovely. She used to love listening to the music and going to sleep. I'd just be saying, turn it off, turn it off. And sometimes she wouldn't even have it on, you know. But I'd imagine that I could hear it.
Adeel [15:36]: oh yeah yeah okay yeah i know what you're talking about yeah i feel like sometimes i have that sensation as well when i'm when i'm when my ears especially when it happens regularly you're probably yours kind of filling in the space maybe or your brain and i think you know when you're expecting it then it you sort of can't imagine it i think um but yeah and then i i discovered those little film earbuds which i just thought it was my birthday and christmas
Julie [16:05]: all rolled into one so i just lived with them and then um like with me my other brother he'd he was in a band and it was just like of my whole thanks you know looking up to the sky saying thanks for that because he'd have his friends around and he'd play the musical instruments and he'd he'd have a keyboard but what he'd do is he put his headphones in so you couldn't hear the actual key you couldn't hear the music but you could just hear them bashing on the keys right right i don't know whether that was worse or not but um so just every night was like really really hard living at home going up into my teenage years um computers the you know the old amstrad computers
Adeel [16:53]: Yeah, I was going to say back in the 80s and 90s, those keyboards were not very, I mean, it was all clickety-clackety.
Julie [17:02]: And me dad would like to sit there playing games on that. You know what? I could never sit in the living room with my family. Me mum used to knit, you know, she used to knit clothes and jumpers and stuff like that.
Adeel [17:17]: Yeah.
Julie [17:17]: And the knitting needles together, I couldn't be there. with that and it was sort of like the running joke in the family but actually wasn't funny it wasn't funny for me it was torture but it was people used to laugh at it I don't think I don't think anyone in my family actually got it and he understood it was sort of like a joke but not in an evil way they wouldn't laugh they used to just say oh our julie can't sit around us um but i couldn't and it was a shame really because i missed out just just sitting you know with my family yeah i know i know i totally totally know this this is a whole other thing it's oh jack
Adeel [17:59]: try to find out about is like that what we know what was the that distance that gets created um you know some people have like really damaged relationships where they they just kind of like it's not just the distance it's like um just baggage and they can't really um They can't repair all that lost time because there were a lot of fights along the way. It sounds like at least, you know, there weren't too many kind of real fights, but there must have been distance that was created where, you know, your family was probably participating in things together and you maybe kind of felt a little bit like an outsider or am I just reading too much into it?
Julie [18:36]: No, that definitely happens as well. I could just hear it. I could hear them having a laugh downstairs. And I just think, oh, it's just, it's rubbish that I can't be there. They probably just thought I wanted to be separate. Yeah. And I did miss out a lot, I reckon. Yeah.
Adeel [19:00]: Did you go on trips together, you know, outside of the house? Travelling?
Julie [19:06]: Yeah, we'd go on, we went on like holiday every year. You know, we stayed in the UK. So we'd go on caravan holidays and stuff like that. And I was fine. My mum used to snore, so that's another thing. My poor mum, if she listens to this, she'll be more surprised. But like I say, I used to just put my fingers in my ears every night. in bed and just pray that nothing else there and then.
Adeel [19:36]: At least your brothers don't have their drum kits and pianos and keyboards on vacation.
Julie [19:43]: They very rarely came with us, which was good.
Adeel [19:46]: yeah what did your um what did your mom say then when you when you told her 10 years ago what it was did it uh did it did it bring any kind of closure on anything like you know help kind of uh explain things well do you know what she was she was like um she was a bit sad and upset that i'd that it had been that difficult for me but it also i could say then i could say well you know
Julie [20:17]: chewing gum is a big trigger for me so I could say that to her then so now she doesn't have it and if say I go to the house and she's got it in she whips it out really quickly and she you know she's dead awful like that now and my sisters is exactly the same they really understand it and they would never try to they'd never forget or they'd never try to trigger me on purpose or be thoughtless about it. So that's the real good thing about it. I think that it made that easier and I could have those conversations with them.
Adeel [20:59]: That's great. So that warmth is kind of coming back that maybe you had less of early on. Does that kind of help? That must reduce the stress for you, right? Just kind of sometimes knowing that other people are aware and at least trying can kind of get you through some of the accidental triggers, at least for me.
Julie [21:20]: I totally agree. I think it lessens the stress when you know that people are trying to help and if because you know what a deal i i just tell everyone now if i ever find myself in a situation so say for example if i'm in work um and keyboard typing didn't trigger me right until about around 2012 and then it started to trigger me so i had to tell my boss I thought, I'm going to tell that straight away. I'm not going to sit and suffer in this environment. And I do believe that wherever I go, if I have to be in a certain place at a certain length of time, I would address it. I've been in training situations and someone's got the keyboard out and I've just had the words with the training leader that I can't this here if that continues and it sounds awful. But you sort of have to have an element of control, don't you, to deal with your surroundings?
Adeel [22:40]: That comes up a lot too, yeah. Just having control of your environment kind of is one thing that kind of helps as you're an adult. You feel more assertive to be able to do that and control the environment. Whereas when you're a kid, like, you know, you've got to have tea with your family. There's no way out except going to your room. How did, so when you do bring it up with like training sessions or your boss, whatever, like what is your reaction? First of all, it's amazing you're doing that because, you know, the other people I've spoken to from the UK, you know, some of them I've talked about how the culture in the UK is more just kind of bite your lip and kind of like don't talk about that kind of stuff. Is that kind of, what kind of reaction have you gotten? And can you maybe speak to kind of the the general culture on this kind of stuff in the UK?
Julie [23:33]: Well, you know, this place where I work, I've worked here since 2007. So my boss at the time, because I've got a different manager now, but she was just brilliant. And she just, she says, okay, let's see what we can do. And at first there wasn't any way for me to go. So I just, I was basically just moved around the building. I'd be sitting in the kitchen. Sometimes with my laptop. And it wasn't ideal, but she tried her best for me. And also now, I've got a new manager. I've got my own office. And I don't know, I've just been allowed to do that. I really couldn't comment on the culture. I would not apply for a job nowadays where it was an open office. I just wouldn't do it. Right, yeah. Which restricts you an awful lot because you think, oh, I could do that job and I might like that, but I wouldn't do it because I wouldn't put myself through it. If they said, or if I did... i would i'd actually say once i got the job i'd say before we start can i just tell you that this is the situation i wouldn't go into a job i'm just i wouldn't put myself in that situation because i just think i don't want to be that stressed in my life not for a job um so i i could not sort of comment on the culture but you know what I read a lot on the Misophonia Treatment and Management Facebook page.
Adeel [25:18]: Yeah.
Julie [25:19]: And I read that an awful lot, and I think it must be awful for your boss not to understand and to just tell you to suck it up. It must be terrible. So I consider myself really, really lucky.
Adeel [25:33]: Yeah, no, and that's interesting that you said that you wouldn't take a job that might, that would be in an open office. Because, you know, there's somebody I was talking to who is doing research on misophonia in the work environment. And there have been people who were thinking about like creating like a... handbook or something for employers because i feel like uh i think from their side they might be missing out on a lot of um you know good good talent if people are you know going to avoid uh working for them because because their environment so i feel like um employers in for their benefit should make things easier for miss films and other people with uh you know these kinds of issues
Julie [26:17]: um so yeah yeah hopefully that that improves in the future yeah i i listened i think i listened to a bit of that this morning while i was out walking dogs and i thought that's really really good what she's doing because it's you know a lot of a lot of jobs now uh you know a lot of it's online a lot of it's hot-spaced and people hot desk so there might be three or four in an office And so I think what she's doing is brilliant. That lady, I forgot her name now. I think you're talking about Olivia.
Adeel [26:53]: Olivia, yeah. She's just over in Germany.
Julie [26:56]: Yeah, I listened to her this morning, yeah. And I thought that's really good. And, you know, the more stuff like that, the more awareness raised.
Adeel [27:06]: Oh, absolutely. I think imagine if we just penetrated the human resources of large companies. I mean, if they just sent an email to the whole company, that would automatically hit millions of people. So, you know, just that little thing could be a big inflection point.
Julie [27:26]: It could snowball, couldn't it? Yeah, it'd be really cool.
Adeel [27:29]: Yeah, maybe going back to your current situation and your family, did we touch on what your kids have thought of when you told them and how it's been since? Are they also just as sensitive as your sisters and your mum?
Julie [27:47]: Like I say, I don't try to make a big deal out of it, so I'll just... I'll just sort of, I won't mention it. I'll try not to mention it when I'm triggered. But last week, it was the first time, and I feel like I really let myself down. I had a bit of an anxiety attack or a misophonia attack, whatever you want to call it. And my daughter was there. She was in the house. And what it was, there was a little bit of work going on in the garden behind where we live. And I thought it was just a little bit of gardening work. And you sort of tell yourself, if you can tell yourself it won't be long and it's not going to last forever, then you can sort of get through. But when I looked out of the window, I saw that they were building like an extension. So I thought this is going to be here for months. And I just lost it. And I don't, honestly, I don't do it that often, but I just had this overwhelming anger. And I just, you know, just slammed the bathroom window and ran downstairs. And I was just furious in the kitchen. And I was like, I don't believe it. I was screaming all over the house. And she come running down, she said, what's wrong? And I was just lying on the couch. And she's saying, mum, what's wrong, what's wrong? and so I just tried to explain to her but I was just crying so much at the time and this hasn't happened for ages this but it was just the thought of that building where going on for months I thought this is just gonna kill me um so she was she was like it's your mindset it's your mindset and then I just thought I calmed down I'm saying I'm sorry you know I didn't mean to react like that and she said later on in the evening she texted me she said mama i didn't know she said i can't stop thinking about you and i didn't know that it affected you that much so she didn't know you see she knows that sounds triggered me but not to that extent um and like my son i don't really speak to him about it to be honest because i tried to hide it but you know what i don't want them to know about it too much, because I don't want them to develop it. And I know that sounds mad, and touch wood, I'd say they've probably escaped it, but that's why I don't really talk about it that much. I'd say I did with my partner, and he was quite good to an extent, because, you know, there's things that he did and this is the awful thing about being in a relationship with someone that when they're your trigger it's just I just think it's awful I commend any couple that stay together I've got to be honest because when they're your trigger and they just do normal things and to be honest Adeel sometimes like my partner would do something and my kids would make the same noise and they wouldn't trigger me, but he did. And that's bizarre. But I do read also that some people say the same. They can watch the money, but not another person. And I just think that in a relationship, it's so difficult to... to get through really and this is why I don't talk about it too much with my kids but as I say I'm going back to my daughter and she's seeing me and then the following day because that had happened I had another one in where something was going on outside and my sister called me and I had another full on meltdown and do you know what I tell this is the truth I still feel that today in my stomach like that that nervousness because it's like it stayed with me that anxiety from that from that particular trigger or yeah from yeah just from the whole thing yeah i just feel like it's lived there and i just need to get rid of that somehow um but yeah so and i mean and to be honest my kids don't really trigger me my daughter might sometimes if she's on it she does a lot of Zoom calls and you know the noise from the laptop when I can hear the other person on the laptop speaking.
Adeel [32:45]: Right, right.
Julie [32:46]: Yeah, that's a trigger. So bless her, she just puts her earphones in.
Adeel [32:52]: Right, okay, yeah, so right, if there's no earphones, then yeah, that kind of laptop speaker, the choppiness, yeah, can definitely be.
Julie [33:01]: Yeah, yeah, she'll get that as well.
Adeel [33:04]: Yeah, it's not definitely not my favorite. So I definitely try to, uh, it's not, it's not like I'm particularly a mouth sound, but it's something I'll be like, okay, it's time to find something to do in another room. Yeah. Yeah. But, um, no, I mean, you hit a lot of points that, uh, um, um, you know, I mean, um, and, uh, yeah, that a lot of them, they're not uncommon. I mean, um, in the, the whole question of like, uh, how much to talk to our kids about it and not wanting them to develop it. First of all, not being triggered by them as much for some reason. Not wanting to talk about it to save them from maybe developing it. Because we don't know what really causes this. Yeah, these are things that have come up in conversations at the Miss Funny convention and other episodes. So what you're feeling is totally normal. Um, and, and it's, yeah, it's great that you're, that you're, that they're not triggering you. So, um, did your, um, going to your, um, uh, maybe, yeah, maybe I don't even, maybe your partner has, how long were you with this most recent partner? Was it, was it the, uh, um, it, was it your father, your children, or was it, uh, um, more, more recent partner?
Julie [34:25]: No, he's not the children's father. So I was with him for seven years. And we did discuss it very early on in the relationship.
Adeel [34:36]: Right. So you would have known what Miss 20 was by that point, because you heard about it 10 years ago. Okay.
Julie [34:41]: Yeah. I was actually with another partner. I was with another partner at the time because he was a trigger as well. And it actually stems from sort of like an argument that and and i just thought like something i've i've got to find out what this is and i googled i googled it and so it was like an explanation then and it was a huge relief do you remember what you googled not to uh oh i'm gonna come back to your the partner 200 i'm just always curious what people type into the google box when they're uh when they're trying to figure this out do you know what i i just i can't remember it must have been like something like i hate sounds or something like that and then it just came up and i was like clicking away and i just thought oh this is just honestly it was it was elation that i felt i just felt this elation and it it was misophonia uk i think um that it just it came up with this paragraph and i kept reading it over and over
Adeel [35:49]: Yeah, and it's like, this is my biography.
Julie [35:51]: Yeah. This is me. Wow. And then there was comments underneath from loads of people. There was like a thousand or something like that. And I was just... I was over the moon. Because, of course, I'm not mad.
Adeel [36:07]: And then you went to your partner and what happened then?
Julie [36:12]: I just said, look at this. Do you know, I don't think... I don't think I explained to him or this partner that I've just separated with to the extent that how it made me feel. and you know what i've sort of revisited a lot of stuff over the past few weeks and i thought i thought to myself you know in relationships when you start noticing a few cracks and you think right we're going to work on this and i'm going to work on it and the type of person that i am that that's what i want to do but you know i think misophonia just plays a huge part in me not working on on on resolving or fixing those issues because I thought, okay, I've got this. You trigger me. I'll be better off probably on my own and you'll be better off without me because I feel like I become like a controlling person. When I have to control sounds, I don't like who I become. And I'm probably not the person that they met when they met me. Do you get what I mean, Adele?
Adeel [37:33]: Yeah.
Julie [37:34]: Do you know when you meet someone and you've got loads of fun and everything's lovely and then they begin to trigger you after like a couple of years or hours longer and then I don't, I'm speaking for me here, I don't feel like I was that person and I feel like I was always anticipating a noise or looking, you know, that glare, giving that glare Or sometimes, you know, I don't want to go home in case he's doing this. And I think that instead of waiting through my relationship, I just thought, and I genuinely do think this, they'd probably be better off without me. And if they're not there in my home, then I'll be more peaceful. I'll be able to put my plugs in whenever I want. I'll be able to, you know, go to bed because the television downstairs has always been a trigger for me. So I've never gone to bed first. So I thought, I think I can go to bed when I want. And I think it's a real shame, actually, that from my point of view, I think misophonia has probably played a more of a a bigger force in my relationship's beating down than the other person has actually realized.
Adeel [39:04]: Gotcha, yeah. So it's not necessarily a collection of triggers, but just the... your kind of realization or... I don't want to say realization because it seems like... it makes it seem... um like it definitely is kind of you when you know it's it's it's not something you're doing on purpose but like you're talking about like how well in in a lot of relationships there's that initial kind of honeymoon period and then you start to find these cracks um whether even if you don't have this phone yeah but you're thinking like it comes out of that kind of guilt and shame where maybe you feel like like you said you don't feel like the same person because you're doing those glares and that cycle is kind of building and so you feel like maybe it's not worth fixing those other things because it's kind of inevitable yeah and also I just think
Julie [40:06]: imagine what I always think is imagine living with me and having to be controlled and just that they want to do just a normal thing. And I, I have to control that style. So I always think, and do you know what a deal I'm not being a victim yet or anything like that. I'm just, I just think that whereas before I was, you know, sort of like when happy go lucky, I think it just turns you into a person that you're really not. Um, And I sometimes think, I don't know, this might be going a little bit extreme, but I think sometimes it makes me feel unlovable with it.
Adeel [40:47]: you don't understand what i mean by that yeah no i know what you mean i know what you mean because you you're always going to have your guard up and so it's almost like um nobody very few people might if you always have your guard up like it's hard for somebody to get in you know get in um get inside um and because they're always going to be hit with that reaction and so it's um whether it's true or not they they might feel unloved
Julie [41:16]: yeah yeah and and i think what you do is you tend you tend to demonize don't you the person that's making because you're sort of like like disgust is is one of the triggers isn't it
Adeel [41:32]: yeah disgust uh you sometimes your your brain your brain kind of um your brain goes in the direction of like well they're probably doing it on purpose like they're they're obviously doing it on purpose and especially if they know that what you have then you feel like oh well i told them once they must they must be doing this on purpose to hurt me kind of thing it's kind of where our minds go um and you know what it's just not true it's like it's like the strangest
Julie [42:02]: thing um ever like how how this happens in your brain um i i just never ever understand it i i think it we we all accept it don't we all and and it's not a well with me because i'm like you know i live i'm a healthy person um but i think what is this it's just a strange thing ever isn't it
Adeel [42:30]: Yeah, it's going through some research, hopefully more and more. But yeah, I don't know. It feels like it's like, you know, back from our lizard brain where we had to react to any kind of like danger in the jungle. I feel like there's some kind of leftover extreme DNA malfunction from that time that's kind of like misinterpreting stuff now.
Julie [43:00]: So we're special, really, aren't we?
Adeel [43:03]: Yeah. Well, maybe there's something coming in the future for the human race, and we're just ahead of the curve genetically. Really?
Julie [43:10]: You never know. But you know what? I do a lot of work on the job I do, because we work with families. We talk a lot about trauma. And you know the ACEs study? Have you heard of the ACEs study?
Adeel [43:24]: No, I haven't.
Julie [43:25]: No, it's the Adverse Childhood Experiences study. So it looks at how a child develops in accordance with their environment and things that happened to them growing up and how their environment has affected their brain development and their development into adults. And you know, when I think about that, because there's a list of traumas that we talk about children going through. Do you know when I... I'm not saying misophonia is a trauma, but you know the reaction is pretty traumatic. Your response is like a traumatic response. So, you know, like the rush of cortisol into your system and the fight or flight and the anticipation. But sometimes that's worse than the actual... trigger the anticipation so you're constantly living with that in in your body and i think that it's traumatic and and we we get the same um we get the same reactions as trauma in our bodies and sometimes i'm i'm not really okay with it there's a man that i i absolutely love his name's gabriel matthew whether you've ever heard of him i don't think so Now, do you know what? When you get a minute, just Google him because he's decent. And he talks a lot about trauma and addiction and stuff. I think I'm actually addicted to listening to him, ironically. But he talks a lot about how your child's experiences shape who you are and how you have to adapt. Sometimes you have to adapt certain ways just to actually function and to survive. And I think we've all done that, haven't we? You know, from children, I think we've all adapted.
Adeel [45:38]: Oh, absolutely. Probably in ways that we don't even know because it started so early. There's probably trauma that we're feeling that seems normal to us, but it's probably different. And it's interesting that you said that because there have been at least two episodes. I mean, there's been a lot of commonalities between the episodes, but two that were particularly striking were, I think, two people who are teenagers or maybe in college now who both developed it after their grandmother died, who they were very close to. And it was the funeral following where they started to get triggered. Really? And so, yeah. And so it, that just, it really just kind of like really resonated as a, no, I mean, you know, definitely childhood trauma. Um, and then that was the onset like that, that, that the funeral right after.
Julie [46:38]: So, um, that's, that's, that's strange, isn't it? I mean, but yeah, it's, but it's almost like we've lived trauma because we've lived with this.
Adeel [46:51]: Cause right.
Julie [46:53]: It's the same responses that we have in the body. So we have the... If we're triggered or we're anticipating a trigger, I certainly get a pain in my stomach. And when you're angry and upset and scared... You start to shake, yeah. Yeah. Sometimes I'm really, really scared. because of the noise that might be happening tomorrow. And I'm scared the day before of the noise. So it's like, that feels like a traumatic response to me. And it's only when I read a little bit more about trauma that I realise this feels very much like that. And I'm not saying... It's a true massive event, like, you know, abuse or anything like that, don't get me wrong, but I'm not even saying it's on the same level, but my body reacts with a true massive response. Right. And I don't know how other people might feel about that, but I definitely think there's, like, a similar experience going on there.
Adeel [48:07]: Yeah, no, that makes a lot of sense, especially the way you're describing it, the way you feel. Have you ever contacted, like, a therapist or psychiatrist, maybe, to just kind of, like, talk about misophonia in particular?
Julie [48:24]: Yeah, I did, you know. I went to an audiologist in, I think it was around about 2013, 14, and he just wouldn't address the way of misophonia. He wouldn't speak about it. He would speak about hyperacusis.
Adeel [48:41]: Yeah, right. Heard of that.
Julie [48:43]: Yeah. But he was a tinnitus expert, this man, and he just wouldn't speak about misophonia, whether it's changed now, because that was like seven years ago, but he wouldn't talk about misophonia. But you know what? I was having a bad day one day, and I said something, and he referred me to a psychiatrist. But I had like one session with him and he said, you know, you don't need to be here. Because really, I mean, what I could probably do with this CBT, you know, around the fear and changing just that pattern of thought maybe. Because last week, you know, when I feel that scared about the noises the following day, I think, Julie, just get a grip of this. And I don't know whether sometimes it's when I feel already stressed that it's just that exacerbates it or whether that exacerbates the stress. I just like the chicken and the egg, isn't it?
Adeel [49:52]: Could be, yeah, it could be a spiral, but definitely taking whatever steps you can to reduce stress is definitely not a bad thing. Yeah, maybe going for a walk unless it's a nice day and then everyone else is going for a walk and triggering you.
Julie [50:09]: Do you know what? No one triggers me while I'm out walking. Honestly, I walk twice a day. Yeah, I walk twice a day with the dogs. I go to the jog. and I know what my triggers are in the house and outside so I'll just deal with it but it was when it was when I saw that building where I just that sort of just shook me it really did shake me but now I'm okay because I think okay when I pull up in the car to go in I just put my earplugs in so I'm dealing with it and I think Julie's are not there every night so just chill you know just chill in the night So it also makes you grateful for the peaceful times that you do have as well, I think.
Adeel [50:53]: Yeah, right. We should definitely be grateful for any quiet time. Have you, has this kind of, you know, with your social work, have you, has this kind of helped you maybe, I don't know if you ever had a chance to recognize it in people that you've been helping in your kind of day job? Or do you meet, like, do you meet the actual families that you're helping?
Julie [51:22]: Yeah, I do. And do you know what, Adeel, do you remember that program, 2020?
Adeel [51:27]: Yeah, yeah, yeah, yeah.
Julie [51:29]: Yeah, it was like a big turning point, wasn't it, that program?
Adeel [51:33]: Yes, yes. There was an interview.
Julie [51:35]: Yeah, and there was a girl on it, wasn't there, and she couldn't speak to her own mum. Do you remember?
Adeel [51:40]: Yeah, yeah. No, I totally remember. It comes up on the podcast sometimes, yeah.
Julie [51:44]: Yeah, and I'm dead grief. I feel so grief every day that that's not something that I struggle with. But I worked with a family, and there was a young girl. She was 16. And she used to scream every time her nan, she lived with her nan, her grandma. And every time her grandma spoke to her, she'd just scream, get out, get out of your room, don't come near me. And I was just, the more I listened to her, I just said to her, I said, what is it about your nan? Is it her voice? And she said, yeah. So I brought her into the office and I showed her this, I showed her that programme. And she just burst out crying. And she said, that's how I feel about my mum. I know. It wasn't that powerful.
Adeel [52:38]: Yeah.
Julie [52:40]: Well. I was just, I just thought, you know what? Like, that's the job done. She knew. She knew that's what it was. And she knew what misophonia was then. So, and do you know what? It took her nan a while to come round. She was sort of like old school. And she just couldn't understand it. She was saying, I've never heard anything so stupid. But I just worked with her and said, no, this is real. And she loves you very much. She loves you so much. Because her nan thought that she hated her. And she actually loves you so much. And it's so cruel, isn't it? Really, when you think about it. Yeah, yeah. I was able to explain. And there's probably been three or four families that I've worked with and the children have had it.
Adeel [53:37]: And you've brought it up every time. Yeah.
Julie [53:40]: Because you sort of know, don't you? But as you're talking, you think, oh, okay. And they say she hates the sounds of this or he hates the sounds of that. And then you just do a little bit more exploring. And it's like you're just giving them a gift.
Adeel [53:58]: Yeah, absolutely. Yeah, that's amazing. That's why I want to ask. I mean, you're in such a perfect position to change people's lives, not in just even the usual great stuff that social workers do, but you have this extra superpower, I think, to really change people's lives. That's amazing.
Julie [54:20]: Yeah, that 2021, though, I just couldn't believe it. And she just, like, she just burst out crying. It's like just a huge relief for her. Because how do you actually say to someone, don't speak to me because your voice goes to them, you know?
Adeel [54:38]: Right. And it's worse when you're a kid. You have no idea how to express it. So it must, yeah. You have to imagine what the grandma must have felt. I mean, yeah, that's great.
Julie [54:49]: It's so hard for families, isn't it? A deal, you know, for family members. It must be really, really difficult for them to hear things sometimes. yeah you know like don't breathe you know i can't bear the noise of your breathing don't breathe or just awful right really awful and it's like the big it's the cruelest thing it's not really um and those you love the most trigger you the most so That's what they say.
Adeel [55:18]: Yeah, absolutely. Yeah, this was, that was super powerful. We're getting up to the hour. Yeah, maybe this is actually a good way to end it, but I did want to kind of just ask if you had any other, anything else you want to tell people that you've learned about misophonia or to people who may not know that they have it or just any kind of last words.
Julie [55:48]: Do you know what I would just say? Always be honest. Don't ever hold it in. You just need to be honest. Because it could make a massive difference to your life if you're honest with someone, especially in the workplace. And fight. Fight for your rights, really. Because who knows where we'll be in 10 years with this. It could be a recognised thing. And I would just say fight for it because you don't deserve to be sat somewhere in total stress, do you? Especially if you're in the workplace. And I would just say always be honest. And I've learned a lot in my life about this, about myself, about others. I'm still learning and I'm nearly 50. And I just think that we just do the best we can, don't we?
Adeel [56:50]: Yeah. Every day seems like a struggle and we just do the best we can. Some days are better than others. And yeah, and we're always learning. I'm definitely still learning. Yeah, those are great, great, great, great words.
Julie [57:05]: Can I just say this as well? I don't know whether you listen or you know of Byron Katie. She does something called The Wake.
Adeel [57:16]: Yeah, I think that's come up on a previous episode. I'll find it out for you, yeah.
Julie [57:21]: Yeah, but she's really interesting as well. She asks the question, because it's about overthinking things and where your mind can take you, and she asks the question, who would you be without the thought? And I always think, who would I be without the misophonia? Who would I be? And it's actually my goal in life to just be that person and to actually minimise misophonia so small that it doesn't affect me so much. Who would I be without the misophonia and who am I without it? Do you understand what I mean?
Adeel [58:05]: Yeah, yeah, yeah. It gives you a goal to shoot for. It gives you a profile, a person profile to think about, to aspire to, basically. And you just kind of try to work towards that.
Julie [58:25]: Yeah, definitely.
Adeel [58:26]: Well, this is, yeah, Julia, this is great. How do you feel? You were nervous at the beginning. what i feel i feel like it's this has been therapy for me honestly i feel really grateful for this conversation thank you so much actually one thing i wanted to ask uh just real quick was like do you know anyone else who has misophonia like around you you know or anyone that you like a friend or somebody that you you know met and you're still in touch with
Julie [58:54]: um i i know a couple of people that i work with like you say um and i think my brother might have developed a little bit of it after he had a stroke but not to the not to the degree that i had it no i don't really a deal i know people who have got maybe one or two triggers but not not growing triggers. I feel like I just develop year on year. I know some people that might have a breathing one or someone that might be triggered by eating sounds around the table, but not to the extent that I have it and other people that we read about.
Adeel [59:44]: Gotcha. Gotcha. Yeah. Okay. Yeah. Just curious. Cool. Well, thanks again, Julie. Oh, thank you. Thank you, Julie. Fascinating story there at the end about that granddaughter. We really dug deep into some feelings in this conversation. It was awesome. If you're enjoying the shows, don't forget to leave a little review in iTunes or wherever you're listening. Music as always is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [60:26]: Thank you.