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Adeel [0:02]: kind of casual kind of thing. Okay, cool. yeah, then I'll just say, Esti, welcome to the podcast. Great to have you here.
Esty [0:02]: EY! Nice to meet you.
Adeel [0:13]: Cool, well do wanna tell us a little bit about kind of where you are located, what you do?
Esty [0:19]: Okay, so I actually grew up in Hackney in London. Yeah, just recently I moved to live on a farm not far from London, just an hour away. It's been doing wonders and it's saving me from myself. There are barely any triggers and the change is just 180 degrees.
Adeel [0:26]: Cool. Gotcha, okay. Yeah, and so was the move primarily because you couldn't take where you were before in terms of noises.
Esty [0:57]: I needed to move because I, well, it's a lot, it's a lot, it's a lot to, a lot behind it. but who I am today and my relationship with my family and the people who matter to me is very much based on, if I need somebody to blame, it's it's misophonia to blame. because some people,
Adeel [1:23]: Mm-hmm.
Esty [1:27]: suffer from a few triggers, some people suffer from many triggers, some people suffer on an emotional level, and some people suffer in a way that impacts all their relationships. And that was me. And I had to get away because the only way I can have a relationship with my family is when I'm far away physically. Because when I'm close by, it's always, you know, the reactions that come when you're triggered.
Adeel [1:42]: Mm-hmm. Mm-hmm. Yeah, yeah, absolutely. And it sounds like maybe they're not the most understanding of your misophonia.
Esty [2:03]: I only discovered myself that this thing that I was reacting when people were eating and had a name. I was 17 and I had been having that since 10 when misophonia usually develops.
Adeel [2:18]: Right. So and I guess so how long ago? Well, I don't want to like this way age you, but was that a pretty recent discovery then that you had misophonia or was it quite a while ago? OK, yeah, yeah, it's pretty recent. Yeah. So I guess so when you find out what it was, what did that feel like? How did you find out about it, actually?
Esty [2:31]: Well, I'm going to freeze, so six years. Yeah. My dad came home bringing a magazine and I had a page that said a weird word that I had no clue what it was. I've never seen it in a dictionary. said misophonia. And I was like, okay, he said, read it, you'll like it. And I read it and I'm seeing a story of somebody who's
Adeel [2:52]: Mm-hmm.
Esty [3:02]: who's going through, I'm going through and I'm like, hey, I have a condition. It's not the whole world is crazy. It's me. That was the first time I ever thought that maybe I have an issue and maybe it's not the whole world that belongs in a pigsty like the way I, that's the way I thought, you know, growing up, I was the only person who was moral, the only person who was mannered.
Adeel [3:12]: Yeah. Right. Right, right. Did you get any tips out of that? anything from that experience kind of help you cope at all?
Esty [3:35]: No, unfortunately, like in all my years in life, my family has never done something, has never been willing or able to come towards me in a way that they had to pay a price. It's always how we can send ST away so it can be easier for us. So we'll have a sleep in you know, in the flat.
Adeel [3:48]: Mm-hmm.
Esty [4:03]: somewhere else, we'll send her away, we'll send her away and we'll send her again, we'll send her to a different country, we'll send her psychiatrist, but it's not about dealing with it. It's not about why should the other kids pay a price. It's a lot of that and I'm still hoping for change.
Adeel [4:18]: Yeah, okay. So, like their way of dealing with it was, were you sent off to like boarding school or just were you literally just like sent away if you were reacting or what was, because you're living at home, right? I'm just kind of curious, what was the living situation like for you? Yeah.
Esty [4:38]: was living at home and I have a lot of siblings. I was growing up with a lot of and... I just basically, you couldn't find me at home. I was hiding in bed, hiding in the bathroom, family meal, I was just not there. From when I'm 14 or 13, I haven't joined a family meal. And they were fine with it. I mean, they still set my place every single meal, which is, I find really interesting. I find it nice, but they think they're being thoughtful, and it is, but hey, maybe...
Adeel [4:49]: you Yeah. Mm-hmm. Yeah.
Esty [5:14]: Maybe go to someone who can explain to you what your daughter's going through and what your sister's going through to find something better than just setting a place that I'm never going to sit by. But yeah.
Adeel [5:27]: Interesting. Okay. So yeah, a few things there. it sounds like, well, how many siblings did you have? Like what was the family size? Just kind of curious to the picture at home.
Esty [5:36]: I've got nine siblings.
Adeel [5:38]: Nine siblings, wow, okay.
Esty [5:40]: I grew up in a very enclosed community and that's always expected. You're expected to have a lot of kids.
Adeel [5:46]: Okay. I see, okay. And you alluded to a sibling also having maybe misophonia or some issues?
Esty [5:56]: None of my siblings have misophonia.
Adeel [5:58]: Oh, OK, OK, OK. OK, I thought you said you and one of your siblings wouldn't be at the table. Oh, OK, OK, got you, got you. OK, cool. Interesting. yeah. So I guess going way back, like around around 10, what was other than like a lot of chaos in the home? Like, when did you first start noticing misophonia? What was kind of going on around that time at home?
Esty [6:05]: No, no, it was me. I wasn't at the table. To be honest, I keep thinking back to it. I don't remember exactly how it started. I just remember, I mean, if I have to go into my brain and decide how it developed, I'm pretty sure it developed because I had other needs that were not being met and my brain was taking revenge and attacking me. And that's how Misophonia developed.
Adeel [6:51]: That is not an uncommon story. That's a good way of describing it, what a lot of us go through.
Esty [6:56]: Yeah, when I'm trying to give myself an excuse of why did this happen to me? Because misphonia is not a physical, it's not a physical, people think it's physical, it's anger. don't like when people think it's a, people like to describe it as intolerance to not, it's not about tolerance. It's about all the emotions that come with certain sound. It's not intolerance to noise. That can be different sensitivity struggles. This is not...
Adeel [7:16]: Mm-hmm. you
Esty [7:26]: It's not about the noise, it's not about the sound, it's about the anger, the emotions, the lack of control. That's what misophonia is.
Adeel [7:35]: Absolutely. Can you touch on maybe some of the unmet needs that you feel like you are experiencing around that time that I'm sure many people listening will relate to?
Esty [7:50]: So actually when I, two years after I discovered that I have misophonia, I got obsessed with autism. So...
Adeel [8:01]: Mm-hmm.
Esty [8:04]: Basically that means what is literally my wiring of my brain. It's not wired like neurotypical people are. Some people say misophonia is also a type of neurodivergence, which I am exploring because obviously the brain wiring, misophonia is in the brain, is neurological.
Adeel [8:23]: Mm-hmm.
Esty [8:24]: But it is not where I come from, in the community I come from. One of the basic necessities is conformity. So you're expected to be fitting into a tiny box and you have to match and you have to fit in. There's no other option. And I wasn't fitting in. I was weird and I didn't have any friends.
Adeel [8:41]: Mm-hmm you
Esty [8:53]: And I felt it. I was lonely all my life. And I think that's why, that's what made me develop misophonia. After having experience, after having my, my body was telling me like, your needs are not being met. You're living in survival mode. You're living off other people's needs. You're, you're fitting into something that you're not, that you can't, you're not, this is, you're going to explode. cause where I come from, there is no,
Adeel [9:02]: Yeah. Mm-hmm.
Esty [9:23]: awareness of neurodivergence or neurodiversity. There's just one model you have to fit in and that's it. No other options. So I think that's why I'm supporting a developed from an emotional place, not from nothing physical.
Adeel [9:25]: your part of us to you just as just one more. Yeah, and I'm assuming it was you were being triggered at the meal table just or just generally around the house By all your huge family Yeah Yeah
Esty [9:48]: It definitely started with chewing noises. my siblings were telling me, why do keep telling us to stop eating? Suddenly I was attacking everybody and giving them the death stares and the usual fernal reaction.
Adeel [9:57]: Yeah. Yeah.
Esty [10:07]: and nobody understood what was happening.
Adeel [10:10]: What would, did you get any blowback about it? sorry, probably a colloquial term, but were you punished or like, was the reaction to your reactions?
Esty [10:25]: I was just expected to stop complaining about a noise that was not supposed to disturb me. I was told, she's only eating, stop threatening her, stop threatening her life, telling her you're gonna kill her, she's only eating. And I was like, no, I didn't even have the capacity to think logically, yes, she's only eating, but I am still suffering and realize that hey, there's a problem here. It was just like, no, she's not only eating, she's eating like a pig.
Adeel [10:29]: Mm-hmm. Yeah. Right. Right. Right.
Esty [10:55]: And why do I have to see that?
Adeel [10:55]: Yeah, yeah, Were you triggered visually as well?
Esty [11:03]: after a few months, it started, I remember I started complaining about the washing machine. I don't need to see that. I don't need to see that. And I started not being able to, even with music, I wasn't able to sit at the table, even with earplugs. It wasn't enough. And again, nobody understood why is that not enough? Suddenly it's people are chewing gum on the bus and the other end of the bus and I can't go on the tube and I can't be in school because the way the teacher is talking and moving her hand and, and, and, you know, and talking.
Adeel [11:05]: Yeah. Yeah. Gotcha. Yeah. Yeah. Yeah.
Esty [11:33]: Suddenly I can't, I'm just limited. I'm not allowed to go into any space because they all are potentially dangerous for me.
Adeel [11:40]: Did anyone outside of your family and community, did anyone understand, like maybe a teacher or friends of yours outside of home? Or be empathetic in any way?
Esty [11:51]: Come. Nobody I knew had misophonia, at least not on the levels I did. that was the issue because people pretended they understood because they said some noises disturbed them too. If people would have stopped them and said, hey, what she's going through is not normal. Maybe I hate noise, but not the way she does. Maybe I would have been sent to the correct professional to actually diagnose me and provide accommodations. But they belittled my difficulties.
Adeel [12:01]: you Yeah. Yeah. So you said you did get... yeah. Yeah, I'm sorry to that. Yeah, we all have experienced that at some point. You said you were diagnosed with autism. Was there any thought or were you sent anywhere to speak to professional about desensitivities as you were growing up?
Esty [12:49]: So when I was 10 or 11, just after my schizophrenia developed, my parents forced me to go see a therapist actually, to talk about this. Listen to what I'm going to tell you now. I told my therapist, she was very unprofessional, extremely, she probably hadn't gotten a degree or maybe she'd done a course. And I told her, hey, I'm here because I've got a problem with people eating. And she was just after giving birth. That's how desperate my parents were. They sent me to somebody who wasn't even officially working because she was postnatal.
Adeel [12:55]: Okay.
Esty [13:18]: And she came the next session, she came in with a plate of her breakfast, eggs and tea. And she started eating and with a mouthful she said, okay, so you told me that it disturbs me when people are eating. She didn't connect what the action she was doing to what I was saying. And that's not a therapist. I cried so badly. I ran away. I never went back.
Adeel [13:23]: no. Wait, so she did that not for exposure therapy, just randomly?
Esty [13:46]: No, no, no, no, not for exposure therapy, just because she's never heard of that. She couldn't imagine and she doesn't, she didn't know that it's not professional to be eating in a session, especially one that my parents eat for.
Adeel [13:52]: my god. That's even, I don't know what's worse, exposure therapy or that level of unprofessionalism. my gosh.
Esty [14:03]: Something else about exposure therapy, I don't know my thoughts on exposure therapy, but when I was exploring about it, know, with... Okay, later. But I'm not sure my thoughts about it.
Adeel [14:08]: Mm-hmm. Yeah, it's generally not, mean, yeah, raw exposure therapy of just trying to habituate your senses is not, yeah.
Esty [14:22]: successful. No, that no, that won't work. But maybe, maybe combining it with something. I do I actually really want to start studying neurology. Actually, I really want to be the one to develop a cure. Because
Adeel [14:32]: Yeah. Hey, I will be the first to publicize your results. Yeah. Well, how did you do in school? mean, obviously there was issues and you couldn't stay. Sorry, I'm not gonna, I'll put my hand down. But how was school generally? Were you able to do well or to get to college, university?
Esty [14:47]: Maybe one day. I'm thinking strongly about it. I did really well in school. Until just before GCSEs when I became burnt out and I failed most of my GCSEs, which was really interesting because everyone was like, what just happened? I got my hundreds on every exam up until then. And from one second to the next, my brain shut down. that was really difficult and I wasn't able to study since. I also wasn't expected to study because I grew up in a high control group where you're expected to, after 16, you go to a...
Adeel [15:16]: Hmm. Mm. Mm-hmm. Okay, okay.
Esty [15:41]: special school for two years where you learn how to be a good mom and a wife and then you're supposed to get married. And a lot about what they taught you is you're going to be a great mom and kids are so important and kids are so valuable and we love kids. And what went through my mind all the time when I was hearing this was kids are not important. I didn't feel important when I grew up. People were murdering me every few minutes through...
Adeel [15:44]: Mmm. Okay. Mm-hmm.
Esty [16:09]: eating in my ears, making noises and all the... Besides that, me being autistic, just not understanding their brains and them not understanding me. Nobody looked after me when I was a kid. I don't want to bring a kid into this world. And I didn't see a way out of that group. And so I became depressed. I became depressed and then I wasn't fit for marriage. And I went to see a psychiatrist who actually who assessed me autistic. And that saved my life. That saved my life.
Adeel [16:21]: Mm-hmm.
Esty [16:39]: And since then I've been building myself and trying to make space for myself in this world. I would say the biggest difficulty for me, my biggest role is the misophonia because I love my autism, I love the way I think, I love my logic, I love everything about it. Sometimes it's difficult just talking to people with other types of brains and them not understanding me. But the misophonia is just a monster.
Adeel [17:07]: Yeah, wow. No, that's heavy stuff. Thanks for sharing all that. I'm glad you're, yeah, I mean, I'm glad you're here and sharing the story. I guess, did your psychiatrist that you saw, did you mention the misophonia at all? Or was it purely about an odd? No, knew what it was at the time, yeah.
Esty [17:30]: Nobody knows what to They don't know what it is. Even my GP, I had to Google links and find the source resources to send them to read up about misophonia. Nobody knows what it is. It's really sad.
Adeel [17:38]: Yeah, yeah. And I guess what then are your, I guess what have your coping methods been there? It sounds like moving and distance from family has been a key thing.
Esty [18:02]: was here. Because my family is my biggest trigger, my family, when it's other people, it's triggering. And I do have my immediate reactions instinctively that I do to try to calm down. when it's my family, the emotional part is devastating. Every time I put mascara on and I'm around my family, and then I go to the mirror and it's all over my cheeks.
Adeel [18:08]: Yeah. Mmm.
Esty [18:35]: so much crying just two days ago, I was at my parents place and at one point I was fed up. I've just, I locked myself into the bathroom and I just weak my heart out. It's a lot of crying. It's a lot of crying. It's, it's only around my family. The emotional distress that comes in this aponia, when it's around my family.
Adeel [18:38]: Mm-hmm. Mm-hmm. you
Esty [18:57]: Because it's all the emotions, hey, you should have been there for me. Where were you all these years? Why am I so lonely? Why am I so alone? Why is nobody coming towards me? Why do I... Because I kept telling my dad, you know, I'm one of 10 kids. Why can't we do one in 10 days? It's a fast day. That's how I can feel at home. And he said, but why should the nine kids pay the price of one? So I say, why should one kid pay the price of nine? Instead of a little bit of the suffering I put on them being split between all of them.
Adeel [19:00]: you
Esty [19:26]: It's all the suffering of all of them on my shoulders. How am I not going to collapse?
Adeel [19:33]: Wow, yeah, that's a great way to put that back to your dad. I I'm listening, I'm admiring that you're saying, you said things to your parents that most of us, yeah, have not thought of or just bottle up. So that's...
Esty [19:53]: No, I'm very, very butthold up. I'm still very butthold up. It's still not doing any to accommodate me.
Adeel [19:55]: Yeah. Yeah. Right, No, I'm, yeah, that's, that's, that's just terrible. Because what are you doing for, for work now? Are you, you going to office or working from?
Esty [20:14]: I'm not able to work because I'm not able to work now because nobody's willing to accommodate my needs. I do want to work in the future, but I'm going to have to find something independently that I can do on my own terms.
Adeel [20:15]: Not able to work, yeah. Yeah, yeah, yeah. Yeah. Yeah. No, I hope you do that. I'm hoping, yeah, with everyone with so much work from home and yeah.
Esty [20:37]: I was working, I would come help you. Can you hear me?
Adeel [20:44]: Yeah, sorry, I heard you. Sorry, I was probably cutting you off, but I'm curious, what were you working on before? What would you like to do? Would be kind of an interesting way to kind of maybe look at the future.
Esty [20:56]: So I like office work and admin work. But if I was working in an office and there were other people in the office, I would have to go to cry in the corner every few minutes. That would happen a lot. And after three days I would give up and say, I can't play with all these migraines, too much of it. I can't do this. And I would quit. And it happened multiple times.
Adeel [21:04]: Yeah. Hmm. Yeah. Yeah, yeah, yeah. What about when you go out and when you go on the tube or groceries and stuff, or hanging out with friends socially, how is that? Are your friends a little bit more understanding and be able to cut you some slack? Or maybe not have a huge friend circle?
Esty [21:41]: So. Yeah, I don't have many friends, but the friends I do have, I choose wisely. I'm not going to pay the price of misophonia triggers for my friendship. What I found really helps me, especially with people who are important to me. I don't tell them I have misophonia. Even like, even if it's, for example, for a job interview, I won't say I have misophonia because they don't know what that is. I'll say these are my needs. You want to be in contact with me? No eating next to me.
Adeel [21:52]: Mm-hmm. Yeah.
Esty [22:18]: No chewing gum next to me, no drinks, no the other triggers that I have. can't, I'm not. You do any of that, I'm cutting off contact with you. You want to be in contact with me, respect my needs. You don't have to understand it, them, but you have to respect them. And I find that helps with my friends. They often don't understand what I'm going through in my brain. But if they're willing to respect my needs, then that's a friendship I'm willing to invest in.
Adeel [22:18]: Yes. Mm-hmm. Yeah. Right. Yeah, you don't have to understand fully, but understand that it's important enough to respect and just back up. I mean, not making any promises, but you're in the UK. I've spoken to a lot of people in the podcast from the UK. I'd love to help connect you with other people who have misophony who've come on and understand. yeah, just maybe be a force for you, supportive energy for you in your life.
Esty [23:15]: Nice.
Adeel [23:18]: So, wow, okay. Yeah, guess so many ways we can go. So I guess you have, I mean, day to day, have you met other people with misophonia in your day to day?
Esty [23:32]: Last week, somebody reached out on Facebook and the Misophonia group saying she is doing a dissertation for her masters and she's looking for people with Misophonia to help with her research. I met up with her and then we went to a cafe and we both ordered coffee and then she got me a cake. I was about to eat the cake and I was like, oh my gosh, this is the first time I'm sitting with somebody else with triggers. I can't just eat the way I like. I didn't eat. I drank and I didn't...
Adeel [23:38]: Okay. Okay.
Esty [24:01]: and I drank carefully, it was the first time in my entire life that I had to actually think the way I would love people to think when they're around me with good. And I was like, wow, that's not easy. That's not easy. And it was, yeah.
Adeel [24:03]: Mm-hmm. Yeah. Right. It's eye-opening, yeah. People who go to the Misophonia convention say the same thing. But I don't know if it's the same for you, but if I'm around, I mean, I was just on a Zoom call with somebody with Misophonia, and yeah, I meet up with people with Misophonia often. I don't get triggered by other people who have Misophonia as much as I would by somebody who has Misophonia, partly because I feel like there's an understanding and I'm not.
Esty [24:17]: Bye. Yes, yeah.
Adeel [24:44]: under threat and I know my needs would be met if something were to come up.
Esty [24:49]: That is super interesting. It just proves how misophonia is based on emotions and not based on physical. My dad can be making the same exact sound as a stranger. And one will make me cry and one will make me just... One won't affect me at all.
Adeel [24:57]: Mm-hmm. Right. You're right, there's a deeper context that is tied up with our triggers.
Esty [25:12]: That's what I'm going to get into studying, not the triggers, but the emotions.
Adeel [25:16]: Yeah, the meaning. Yeah. think researchers are starting to zone in on that. least there are some directions going in that way.
Esty [25:28]: I don't like when they come with all the high hopes saying, hey, we're going to do CPT, hey, we're going to do trigger training. No, I don't like when they just pretend that they've got this amazing magical, like, you know, we don't need that. We need, need to go. We're fine. Now we're fine with it slowly, but we need something that's actually going to work.
Adeel [25:40]: Yeah. No there is. Yeah, don't think there will ever be a one universal treatment plan for everybody.
Esty [25:58]: Of course not. Of course not, because it's not diabetes, it's not physical, like I said, neurological, and it has to suit everybody's brain differently.
Adeel [26:06]: Yeah. Yeah. Right. And it comes in differently. Like for your story was there's some commonalities, but different from other other people's stories. And so I think that that's kind of the I think people I think I think researchers have not fully wrapped their head around around that point. I think everyone's looking for that single protocol.
Esty [26:16]: Thank you. Some of the hybrid, I just want the really fancy researchers, some of them should develop mesophonia because then they'll use their knowledge. They're already there. They've done their PhDs. Then they'll use their knowledge to help us.
Adeel [26:41]: Yeah, well, Jane Gregory, who I helped write her book on, is actually based in Oxford. She has Misyphonia as well. yeah, there's definitely a need for more researchers with Misyphonia. And there are researchers now who are actually reaching out to people who have Misyphonia to kind of get this kind of context. that's promising. So I guess, yeah, tell me more about where you're living now. Like you're out. far, there's nobody around you. Is that, is that how it, yeah.
Esty [27:15]: There are some farm animals. I don't see any people and I don't maybe one or two a day and I don't need to see people. I'm fine.
Adeel [27:19]: Yeah. Yeah, you get your food, get your groceries.
Esty [27:27]: I always say that if I had misophonia, but if I wasn't autistic, and I don't think I would have survived until now. So my autism saves me from misophonia, because imagine you have misophonia and you're very sociable. You love going out with people, but every time go and you're disappointed, every single time you go and you got your explosive triggers, and then you try again the next time because you forget or you don't think about the dangers. But me, I don't care.
Adeel [27:35]: Mm-hmm. Yeah.
Esty [27:57]: I'll just stay home. Who cares? I don't need people. So that saves me.
Adeel [28:00]: Yeah, so you're, you tell me more about that, dynamic, I don't know about, you know, autism, I don't know too much of the details, but that kind of keeps you away from, you just naturally are introverted.
Esty [28:13]: What if people tend to be less socially... like they have less needs to be socially... I wouldn't say that. They don't socialise the same way neurotypical people do. So I'll take... me as an autistic person with misophonia, if I know I'm going to be triggered, I'm fine saying no, won't go to that event, I won't go to that... I'm fine, I don't need you guys, I'm fine. I'll just stay home with my computer and I like writing, so I'll just be writing and...
Adeel [28:22]: Okay. Okay, okay. Yeah.
Esty [28:43]: I don't need that, but imagine if you love social life, just like I remember my friends did in school. Imagine loving the social life like they did, but every single time being triggered. I would have died by now.
Adeel [28:57]: Gotcha. that, I guess, autistic tendency to avoid crowds and avoid people in general just has a benefit for you in terms of dealing with misophonia. Yeah. Yeah. I guess, yeah, I never really thought of it that way. And I guess, yeah, going back to, mean,
Esty [29:04]: and
Adeel [29:20]: going back a little bit to your family and do any of yours, we know I guess your parent, your dad especially, doesn't really understand. Maybe let's talk about your mom and your other siblings. What are their thoughts on Missifonia now? Is it all or is it all the same because it's such a tight, small, conformist community that it's pretty much all the same. They don't care and they're all the same people.
Esty [29:36]: Okay. First of let me say, like, love my family. However much Misophonia makes me hate them, I'm actually writing a book now about Misophonia as well. And I'm thinking of calling it something along the lines of hating your loved ones, you know? Because like, I love them so
Adeel [29:50]: Mmm. I wanna read this book, this is, yeah, please. Okay.
Esty [30:03]: My writings when it comes to misophonia are so raw and painful. My best lines come from pain. yeah, anyways, so it's really hard. Like I love my family, but it's very hard to feel the love, especially from when I'm physically close because I'm triggered and my misophonia reactions and my thoughts and my... All of that. I'm sure many people have already said what comes to our minds when we're triggered.
Adeel [30:30]: Yeah, they have, but I do want to, I would love to hear a little bit more about your thoughts, that the idea of like that amazing title, like Hating the Ones You Love, how do you go back between the two? you, is it when you're far away, you're calling them and you're very close, you feel very close despite everything that happened in the past? And then it's just when you're around them that you feel, it's fascinating to me that you know, someone who was really, needs were not met, kind of like emotionally neglected in many ways growing up, still feels a love for her family. I would just love to, I don't know, hear your raw thoughts on that, because I know a lot of people are relating to that.
Esty [31:12]: know if love my family. I don't know what love is when it comes to a family but yes I'm willing to invest in my relationship with them because they're my family. Sometimes I say no I'm gonna cut contact. often say that if they don't learn to come towards me, make a little bit of accommodations, I'm gonna cut contact and then I sit down a few days later and I think logically no I don't want to cut off contact. They do so much for me. They really try. They just don't understand. Imagine if they don't understand because they've been around me so long they're so used to it.
Adeel [31:16]: Mm-hmm. Yeah. Okay.
Esty [31:42]: When I tell my sister to stop singing because it's disturbing me, she doesn't reply, hey, I'll stop or hey, I don't want to. She doesn't even do that. She just continues as if my pleas are not, as if I'm invisible. They're so used to me telling them I'm going to be quiet that they don't hear me anymore.
Adeel [31:55]: okay. Yeah. Do any of them have any psychological or issues, not misophonia, but other things that are maybe more popular?
Esty [32:12]: Nothing diagnosed, but I'm assuming there's a couple of family members with OCD and maybe we won with ADHD.
Adeel [32:15]: Yeah. Mm-hmm. Okay, so nothing diagnosed and is that would your family not even entertain trying to get a diagnosis? Oh, actually, it sounds like your family did send you to the therapist. I'm curious if there was if they if they'd sent anybody else to a therapist. What I'm what I'm getting at is like, have they taken anything else seriously or and you're just kind of like not taken seriously, which is not uncommon.
Esty [32:28]: Yeah. I have a sister with Down syndrome, so...
Adeel [32:54]: Hmm.
Esty [32:57]: A lot, when she was born, a lot of the thought and because her disability is visible and affects everybody around, then she got a lot of the necessary treatments, the necessary thoughts, the necessary love and everything. She was showered with everything. And I fell through the cracks because my disability is not visible.
Adeel [33:20]: Yeah. Was that something that you felt from a young age? I don't know what the age difference was between you and... Yeah.
Esty [33:27]: When the child is dancing, especially you know born with heart defects, there's a lot of energy and time goes to that child and every child will feel like, hey I'm not being, I'm being overlooked. I'm sure everybody felt that way.
Adeel [33:33]: Yeah. Yeah. Yeah. Interesting. OK. Yeah. Well, I mean, yeah, that's obviously a very serious, serious disorder. And I guess, yeah, OK, so you're still to this day, it sounds like your needs are kind of like background noise to them. But do they? So I've had guests that have come on who have said like, you know, their siblings, didn't have a huge amount of siblings, but their family would even go on vacations together and not include them because of the misophonia. I don't know if it ever got to that point with your family. It sounds like they were actually at least trying to pretend that you were part of the group, even though they just kind of zoned out on your...
Esty [34:31]: Well they have it, and they're even expected. You're supposed to be perfect and give a good image, so they'll do anything. But yes, I often just chose to stay at home when they went on trips and vacation because I knew I was just going to be a bother for them. It's not because they made me say like, hey, you're not coming along. It was more because I knew they're not going to have fun if I'm there.
Adeel [34:36]: Uh-huh. You chose, okay. Yeah. Yeah. Yeah. Yeah. Yeah. Have you, I need to interrupt that, but I always asking in terms of like partners, you know, has this affected like romantic relationships and whatnot as well?
Esty [35:05]: No, it hasn't. hasn't because, again, like I remember before when I was still religious, when I was still in that group, I told my teacher, I spoke to my teacher about it and she said, actually, she has a daughter with misophonia and who was just getting married. And I said, so it must be if she loves her husband, must be he's not she's not being triggered by him. And she said, no, she is being triggered. And that's very difficult. So I said, no, I think if I get married to somebody I love, then and I won't be triggered because
Adeel [35:35]: Mm-hmm.
Esty [35:35]: my emotions around them will be positive from the start. Tonya is emotion-based, like I say, and, and she disagreed, but I stood by mine and all my partners have never triggered me.
Adeel [35:39]: Yeah. Gotcha, okay, okay. Well, that's great. I hope that continues. what was I gonna ask? Yeah, speaking of the, did you say you're still in the religious group or you have different thinking now? I'm just curious kind of where you Ula. Yeah.
Esty [36:10]: No, I left. When I went to see a psychiatrist abroad for my depression, I also found a better lifestyle for me. One that I don't have to conform to and I could just live freely and discover who I am, what I want, what works for me.
Adeel [36:18]: Okay, okay, okay. Yeah. So that means, was there anything officially you need to do? I'm not sure about that. You know, I don't want to pry too much into what we're a group here, but did you have to like separate yourself in a more, or did you just not go to the place of worship or was there, was there bigger kind of like schism with the community? Like, was it a big scandal kind of thing or was it just, you stopped going to events and.
Esty [36:53]: it's when you're in the community you don't have access to anything outside so we barely had any secular education and everything that we did have was censored so when I left it was like I was reborn and I had to learn everything from the beginning. wouldn't want eat in the restaurant like in food that was bought from shops outside the community we're not allowed to speak to we weren't allowed to speak to people who are outside the community so yeah.
Adeel [37:02]: Gotcha. Wow, okay. Wow, that's huge. wow, okay, okay. And how, and that was, yeah.
Esty [37:23]: Yeah. The clothing, I didn't know fashion, I didn't know, yeah.
Adeel [37:29]: So you weren't watching TV or movies or anything like that.
Esty [37:31]: No internet, no internet, no.
Adeel [37:35]: Okay, wow. And this was in London or somewhere in the UK? Okay, okay. Interesting, all right. Okay, yes. So yes, we're getting, yeah, it's about, now that you're out, I really want introduce you to other people, Miss Siphonia. Yeah, because I think that will help a lot.
Esty [37:41]: Yeah, you're okay. Thank
Adeel [38:04]: It's because going back to your, so then the partners that you knew, they were part of the community or not part of the community? Okay, until you get married. Okay. Yeah.
Esty [38:12]: No, you can't have a partner in the community be married. After I had left already, then I got into myself and eventually I also got into a relationship.
Adeel [38:25]: Gotcha, gotcha, okay, okay. Yeah, well, guess, mean, what are your, I guess, what are your, I mean, what do you hope to do in the future? You've made this big move, well, you made a number of big moves recently, one of them, obviously leaving your community, you still love your family, you live away from them. What are, I don't know, what are your other plans related to Misophonia and maybe life-wise? It seems like you're kind of at a,
Esty [38:52]: I know I
Adeel [38:54]: inflection point.
Esty [38:56]: I don't believe there will be a cure anytime soon or anything substantially to help. And you know, Misophonia, people... I don't know if you understand this thought process, but often it's like, I don't want to cure myself. I want everybody to learn how to eat properly. It's a lot about that. It's a lot of friction against myself from one side. Hey, should I cave in and let them eat the way they want and cure myself?
Adeel [39:01]: Yeah. Yeah.
Esty [39:26]: Or should I continue to suffer because I think that it's not just the way they're acting? Can you hear me?
Adeel [39:34]: Right. Yeah, I can hear you. just going to take my camera off because it says maybe your video is reconnecting. But I can hear you. So maybe turn off your camera and that might...
Esty [39:42]: Yes, Yeah. Yeah, OK, great.
Adeel [39:49]: Yeah, now you just came back and yeah, feel free to turn off. Okay, cool.
Esty [39:55]: So my thoughts for the future, my dreams for the future, because I don't think there will be a cure, am totally, I'm taking full responsibility of hopefully being able to study in a way, in a setting. I had to drop out of university multiple times because of misophonia. But I think can think a different way to study.
Adeel [40:10]: Okay, okay. Yeah, I don't think we talked about universities. So yeah, I'm curious.
Esty [40:16]: I'd love to open a lab and do my own research and from experience find something to help people with misophonia. And on the side, obviously, I'm writing my books and just to spread awareness and to spread awareness because I think if I write a book that comes from within, that's really raw and describes how difficult it is for people with misophonia, then there will be more interest from professionals to actually spend a little bit more time and efforts on this. Just because it's not, well, just because they think it's not common, it's not true. It's very common. Lots of people are suffering and I really want to do something to change that. I want to make a difference.
Adeel [40:48]: Yeah. Yeah, I mean, there are studies in the UK and the US studying prevalence and yeah, they're finding it's definitely not uncommon, 5 % or more.
Esty [41:11]: What is uncommon is how much it affects people's lives. So for me, I can't. It affects my day to day 99%.
Adeel [41:18]: Yes. Right. What, don't know, your writing is kind of, what format is that? Like fiction, autobiography? I'm just kind of curious.
Esty [41:28]: Most of it is memoir. And when it comes to misophonia, actually, it's a lot of poetry, literature, literary styles, anything that fits in, honestly, not fiction.
Adeel [41:36]: Mmm. Yes. Okay, gotcha. Yeah. Yeah. Yeah.
Esty [41:44]: I don't make fiction. And also I've never wanted to make something as real as Misophonia into something fiction. Because that makes people think it's a fairy tale. It's not. When I'm writing I want the message to be clear. This is real. We need to deal with it like it's real.
Adeel [41:57]: Mm-hmm. Gotcha. Yeah, mean, I'd love to, you know, if you're ready to share any of the poetry, whether it's around the time when this goes live or whenever.
Esty [42:10]: Yeah, I'm putting it, I'm going to one day this week, hopefully, I'm going to start actually perfecting my blog. So I'll be putting some of it up there. Yeah.
Adeel [42:18]: Okay. yeah, and if it's okay, I'd love to share it on my social media channels.
Esty [42:26]: Yeah, we'll talk about that.
Adeel [42:27]: Yeah, no, that'd be amazing. And in terms of, I mean, you're in the UK and there are a lot of, there's a lot of miscellaneous research in the UK. So I would love to see if we can find, connect with researchers and maybe there's a way into.
Esty [42:46]: Yeah, I would love to contribute towards a better future, honestly.
Adeel [42:49]: Yeah, well, yeah, ST, anything else you wanna share? is a thank you for sharing such a, you know, a lot of people come on and share a lot of heavy things and I always appreciate it, so thanks for sharing. And I know, you know, from the messages I get, people listen to some of these episodes and aren't as maybe as brave as the people who come on, but they feel the same stuff and they definitely appreciate hearing stories like this, so I wanna thank you there, but. Anything else you, I guess you wanna share about your experiences.
Esty [43:25]: No, I just want to let people out there know that they're not alone and that they should find communities. They should join the Facebook groups. We should create our own safe spaces. And also, if there's any, if there are any web developers over there, can you please create some sort of bot that can let me watch, let us watch movies and not be scared of triggers, triggering scenes? I would love that. That's my dream.
Adeel [43:32]: Mm-hmm.
Esty [43:52]: That is my dream, to be able to watch Netflix in peace.
Adeel [43:56]: So that's an interesting idea. you mean having a button where you can ask if there's going be a trigger in a show or have it something removed?
Esty [44:03]: So having a some sort of pot where you actually put in your triggers in there and tell them that when a scene of this certain trigger comes, he's blurred the screen and put on subtitles and put the audio in there. Yeah.
Adeel [44:14]: Gotcha, okay. Yeah, yeah. I can see that in the future being an accessibility feature, yeah.
Esty [44:20]: the future. could see right now happening.
Adeel [44:24]: Yeah, yeah, yeah. They just need to crank that. I feel like Apple is moving towards that. They've been doing things on the iPhone. Very interesting. Well, yeah, hopefully you can be part of that research too. Anyone listening, please reach out. Well, yeah, again, Estee, thanks for coming on and yeah, wish you the best. And cut.
Esty [44:42]: Yeah, please do. Thank you for hosting.
Adeel [44:54]: And that's kind how I know when to.