Alicia - Teen's battle with Misophonia, autism, and CP.
Transcript
Adeel [0:05]: episode 24. My name is Adeel Ahmad and I have Misophonia. This week I'm talking to Alicia, a teenager in school and singer-songwriter living in Manchester. We talk about Misophonia alongside anxiety, autism, cerebral palsy, as well as dealing with bullying in school, being mocked in relationships, and how medication for anxiety has affected her Misophonia. As always, let me know what you think. You can email hello at misophoniapodcast.com or find me on Instagram or Facebook at Misophonia Podcast. Thanks for the ongoing support of our Patreon supporters who have actually helped my current project of imminently releasing transcripts for all episodes. I'm really excited to get those out. If you feel like contributing, you can read all about the various levels at patreon.com slash misophoniapodcast. And probably the easiest way to help is actually just leaving a quick review or rating about the podcast wherever you listen. All right, now here's my conversation with Alicia. Alicia, welcome to the podcast. Good to have you.
Alicia [1:15]: Yeah, thank you. Thank you for having me on here.
Adeel [1:18]: So yeah, do you want to tell folks kind of where you are?
Alicia [1:20]: So obviously I'm from the UK. I'd love to live in America, to be fair. I think it's great. But yeah, I'm from the UK. I'm a singer-songwriter. If you know where Manchester is, I kind of live near Manchester. Gotcha. And I go to a music college in Manchester as well. So, you know, that's where all the music is in Manchester. So it's great. nice okay and did you say you're uh uh you're going to you're your students somewhere there or where they do yeah okay it's like a music college thing so i'm a student there um i'm nearly finished i've only got like five months left something like that um but yeah once i finish that i'm just gonna kind of go into like hopefully a full-time job and then that can pay for like my singing making songs and doing gigs and concerts and stuff like that
Adeel [2:07]: Yeah, cool. No, I'd love to hear about all that. But maybe do you want to go back to kind of like your experiences in Misophonia, maybe growing up? Like when did you, you know, how far back does this go for you?
Alicia [2:21]: I think it was about when I was about seven. That's when I started with it. And obviously I'm nearly 18 now. So it's been like, what is like seven, eight years, probably longer. Yeah, it's been quite a long time. Because it kind of happened, like, I had my first, like, surgery on my leg. And I think because it was, like, trauma with that. And then there was obviously, I had issues with school and, like, making friends and kind of just coping with, like, mental health and just general things in school. I think that's what triggered it, probably.
Adeel [2:57]: and yeah okay and how did what were some of the first times you were triggered was it then kind of at home around dinner with parents or was it something related to the surgery or school
Alicia [3:12]: It was more to do with school. I think it was like September, so that's obviously when people start getting colds and coughs and they start sniffing and things like that. And obviously it was really quiet in the classroom and then somebody just started sniffing and it just started to really upset me. made me feel really angry and like just horrible like it made me feel awful and ever since then it's just become a thing really i mean sniffing people sniffing is probably like one of the worst ones for me if someone's constantly sniffing it's very like yeah i just can't i can't stand it it's quite a common noise obviously because a lot of people don't realize they're doing it either um Because obviously I know with eating, I'm fine with people eating, but I know there is a lot of people that struggle with the noise of eating. I'm quite lucky I don't have to struggle with that, but you can kind of sometimes avoid that. But I feel like with sniffing, you can't really avoid that because it's more of a, do you know what I mean? It's kind of more, I don't know how to describe it. It's in a lot more situations and environments than eating, if that makes sense.
Adeel [4:14]: yeah yeah i mean you could be walking down the street or you could be shopping or something and people yeah they're not necessarily they're not necessarily chewing on something so yeah definitely much more common and somebody's always sick people would generally just eat around meal times so how did you when you were at school how did you react did you act out or did you bottle it up
Alicia [4:33]: I kind of just like I didn't really act out I kind of just felt all these like really intense emotions but obviously you know it was weird at first because I was just struggling with it and I didn't know how to feel and then I started to have issues with noises at home as well and obviously these ones aren't really as bad now but it was more to do with like you know like background noises like banging or cleaning up or washing up like the clattering of plates and things like that that was really like difficult for me and stuff like sudden high attack kind of noises yeah so it was kind of like it was weird because they were kind of like louder noises whereas obviously sniffing's like like a quiet noise really i mean it's not quite for me but you know what i mean it's more of a quiet uh noise and stuff um but yeah so obviously then i was having it i couldn't get away from it it was kind of everywhere with obviously different noises um But I think with like, as I've got older, I can kind of cope with the noises at home a lot better. But it's mostly just the sniffing really now that's been there since day one that's always kind of really affected me more than anything else.
Adeel [5:39]: And so it's your family, your parents are probably triggering you. How do they react to your sensitivities now?
Alicia [5:48]: I mean they really like understanding about it and obviously like my mum and my stepdad who I live with they never really get cold or anything like that so usually they don't sniff a lot so that's quite good to be honest but you know at first it was difficult because obviously I didn't know there was like a name for it or a diagnosis. so obviously because I think I might have traits of autism as well because there's been other things that I've struggled with they kind of just thought it was like sensitive to noise and it was probably to do with something with that but then when we I think we started like searching it online and we've seen there was like a name for it so my mum took me to one of the doctors that I'm like under And we kind of spoke to them about it and stuff. And then, I mean, there wasn't really a test that was done. It was kind of just like, they were asking, what things do you struggle with? And how does it make you feel? And how do you react? And stuff like that. And then I kind of just got diagnosed with it.
Adeel [6:47]: So you got diagnosed with misophonia?
Alicia [6:49]: Yeah, so I've been diagnosed, I think I was maybe like, it must have been about nine or 10 when I got diagnosed. Obviously, it was like a few years after it had started. um so obviously we were happy that there was like a name for it and you know there was something that was you know that other people have but you know in the uk there's not um we don't really have i've heard that people have treatment for it over in like america and the us and stuff but we don't really have anything like that i think because you've probably got more resources and you've probably got more money and more research that's been done over there
Adeel [7:23]: Well, there is, I mean, there's no official cure or consistent treatment that works for everybody. But there's a lot of research and therapists in the UK as well. I know Dr. Jane Gregory, and I know there are some other folks over there. But yeah, it's hard to find. You might hear about them a lot more from here, but it is generally hard to find. um good therapists who know about misophonia um do you know well what did your diagnosis get you was were there any kind of tips or coping strategies that came out of that
Alicia [8:04]: Well I got referred to like an audiologist thing at the hospital and obviously I explained to them that I had misophonia and the stuff I was struggling with so I got made like special ear plugs like that were moulded kind of into my ears so they would fit my ears and stuff but then this was more from when I was younger but then I kind of like I got really addicted to them. I was wearing them all the time, but obviously that was damaging my ears because of how much I was wearing them. And then obviously it didn't really block out the noises because even though it had a filter in it, obviously, because you can't block it out completely, it wasn't really helping much. So I kind of just had to come off them and just stop wearing them because I found out they just weren't helping anyway.
Adeel [8:48]: And you said you were having trouble maybe making friends at school. Was any of that related to misophonia? Did that get affected by misophonia as well?
Alicia [8:58]: I think probably, yeah, because obviously when you get triggered by people, I don't know if you know, but you can't help but give that person a death stare, and you don't want to give them a death stare, but it kind of just happens. Oh, you have the glare. Yeah, you're like, please just stop. I mean, you're just like, please stop. But yeah, it is difficult to be fair. The people that are making that noise and stuff, obviously you try to stay away from them. But I think because obviously more in primary school, obviously I struggled with it more and I didn't know how to deal with it. So I was like crying in classes. I was kind of, I used to, because obviously primary school, when I was like, I think you call it elementary school, don't you? I think in the US.
Adeel [9:42]: Yeah.
Alicia [9:43]: So when I was there, obviously because the teachers and things, they weren't really like good with supporting anything and that. They weren't letting me go out of lessons or anything to help. So I kind of used to just like cry and like put my fingers in my ears, but obviously people picked up on it. And then I kind of got bullied for it in primary school quite a lot. And obviously people then, they pick up what I didn't like. They don't know how, but obviously they've picked up and they've noticed. And then obviously they're doing that on purpose to, you know, upset me and stuff, which wasn't great. But yeah, primary school was probably the worst for like support and stuff.
Adeel [10:21]: Has it gone better in high school, middle school, high school?
Alicia [10:25]: When I went to high school, the first one I went to, I had a card to come out of lessons if it was getting too much. But then I felt like I was missing the work and the teaching and stuff. So the support wasn't really great. But then I moved to a second school because I was getting bullied there for other reasons. and then so i moved to a different school and they were i think after a couple of months obviously like we properly spoke to them about it and stuff and they were saying like they would let me wear earphones and lessons um know if i needed to you know connected to my phone and stuff as long as it was discreet and i wasn't on my phone constantly you know if i'm just putting a playlist on or a few songs and that's fine as long as i'm not constantly on it so yeah we kind of had that agreement and the teachers knew and it was so much better honestly like it was amazing that they could do that for me because the other school like we were suggesting that but they wouldn't allow it at all
Adeel [11:21]: Yeah, wow. That's rough. Hopefully more schoolers are a little bit more understanding and have some more flexibility. And how about your friend's situation now at this new school?
Alicia [11:34]: I mean, well, when I went to that new school, I did get some more friends and stuff. And I'm still friends with somebody that I did go to school with at that school. So, you know, it was a lot better. I didn't really get bullied or anything like that. I enjoyed it a lot better, to be honest.
Adeel [11:50]: Have you ever met anybody else with misophonia?
Alicia [11:54]: I think I had, like, one friend, but we weren't really, really close. But I think, like, I did speak to her and I was like... I think I spoke to her and I was like, you've mentioned before that you don't like certain noise. And I was like, is this how you feel? And she was like, yeah. And I was like, yeah, that's misophonia. And she was like, oh, right. But, no, I wasn't really close with her. So, to be honest, there wasn't really anybody that I knew. But that's the thing, though, because there's not many people that have it. You kind of feel like you're different and you feel like... You feel like you're on your own because you feel like you can't relate to anybody and people don't understand how it makes you feel.
Adeel [12:31]: Right, right. When did you, well, I guess, how did you first realize it had a name? Was it that diagnosis or was it an article you read?
Alicia [12:40]: It was from, well, obviously I was struggling with it at home at school and then we started searching like, you know, like intense, you know, reactions and emotions to noises and then I think it just came up in like online on a website or something and then we just started searching more and more into it.
Adeel [12:58]: Yeah. Okay. Yeah. Like a lot of us go down a rabbit hole. Interesting. And I guess apart from, you know, over the years, apart from the few tips that you've learned, like what are some of kind of your go-to coping methods, I guess, at home? Well, you said it actually, starting at home, you said at home, you're able to control it a bit better. Is that, how do you do that? Is it like kind of go into your room when it's time, when it's like cooking time, so you don't hear the banging or?
Alicia [13:26]: I think it's more like earphones and putting music on. But then I tend to put a lot more like upbeat, loud music on, obviously. So it does block it out more rather than a quiet song. But that's how I started to cope with that. And obviously, to be fair, like that's what I've been doing at school. And when I go on like trains and buses and stuff like transport, I kind of just use my earphones pretty much everywhere, really. And I have AirPods as well. So I kind of use them as well. yeah yeah gotcha okay um and yeah and uh are you uh actually yeah so i guess since you're in late high school are you thinking about like uh well i guess you're thinking about it you're thinking about a music career right um yeah i was gonna talk about what you well i left high school um i think you call it middle school and then you i don't know i don't know what they call it where you live but is it like i don't know is it like well i think it's like we have college when you leave school But I don't know what it is when you leave middle school. I don't know what it's called.
Adeel [14:28]: Oh, yeah. Well, it goes from middle school to high school. So around when you're 14 or so, 14 to 18-ish, it's high school. And middle school was when you're 11 to 13. And then you go to college, like university.
Alicia [14:42]: Oh, college is like university.
Unknown Speaker [14:44]: 18, 19.
Adeel [14:45]: Yeah, yeah, yeah.
Alicia [14:46]: I'm the one below uni, but I'm not going to university, to be honest. I just don't think that's the route for me. Obviously, like I said, I'm just going to try and get a normal job and do my music on the side until obviously a career comes out of it.
Adeel [15:02]: Have you taken jobs before? I'm kind of curious how you think about misophonia in doing jobs.
Alicia [15:10]: Yeah, I mean, I worked in like, I don't know if you have a JD sports in America. um it's like a retail like sportswear shop thing oh okay yeah yeah we have stuff like that but not not jd yeah all right yeah well we have um it's like a sports retailer thing like a sports like sportswear shop but it's quite popular um a lot of people in the uk tend to like use it for clothes and stuff like that so that was my first job i got there um and i mean to be fair that was fine like i think because like it was weird because even though i didn't like the noises of like banging at home when I was working in the shop and there was a lot of banging and I was working in you know in the warehouse and stuff like that in the back it was kind of like it was different so it didn't really trigger me to be honest it was really weird but you know the environment was pretty much okay really from working with that with my misophonia it was fine really but yeah when I went for like my interview and stuff I never told them about my misophonia because I kind of just I just thought, I'll see how I go on. And then if I do struggle, then I can always say, you know, I have this and this is, you know what I mean? I can always tell them later on if I am struggling.
Adeel [16:25]: Right, right, right, right. Gotcha. Yeah, let's talk about, I guess, did your choice of pursuing music, any of that related to... um misophonia like maybe i don't know anything from wanting to express misophonia through song or just um um do you feel like your sensitivity has made you kind of like
Alicia [16:52]: a better musician or more interested in music as a career or as an interest um i think obviously from like listening to music i've always loved music even before i had misophonia i've always just loved singing and i used to like write songs a little bit when i was younger and i've always kind of just loved it but obviously since i've had misophonia it's i've loved it even more because it's kind of been that escape from everything and i feel like when you're singing and you're performing It kind of blocks, it does block out noise. And it's like that one time when you can kind of just become a normal person and kind of escape from everything else. And that's kind of when I feel normal, if that makes sense.
Adeel [17:32]: Yeah. I'm wondering, do you do gigs, like live shows?
Alicia [17:37]: Yeah, I've done a few where I live, in like the town where I live. And then I think I've done like one or two in Manchester where I go to college. But, you know, that's, I mean, mostly, it was mostly just in my town, like local, like pubs and stuff like that, really. Yeah, yeah. how's the i mean how's it like to sing and then you know risk having people sniffle in front of you oh no that that has happened a few times because like because i usually tend to sing a lot of like quieter songs you know with like the piano kind of songs and stuff like that yeah and when they're quiet as well i'm trying to like focus on that i've heard someone sniffing really on the audience and i'm just like oh no this is like my worst break out into like a heavy metal song and I wish I would I could have done that I wish I could have but no I kind of just had to um kind of just focus on what I was doing but you know it is so difficult trying to do something when somebody's triggering you because your mind's just focused on that and it stresses you out so much it's like your mind just completely goes mental and it's like oh my god but I just had to try and I in my head I was kind of like this is my priority singing and getting this song over and done with that's the main thing and I just tried to focus on that but you know it did really trigger me and I was just like I just can't wait to finish this song and just go away and just hide somewhere.
Adeel [19:01]: Right, right, right, right. Um, yeah, I gotcha. And, um, so you're finishing, you're finishing off school now. Are you finding that it's affecting, um, does it affect like, cause you must be taking like exams and finals and stuff like that. Does it, did you get accommodations for, you know, doing this, doing this test?
Alicia [19:20]: I mean, we don't, well, on the course that I'm on, we don't do like final exams, but when I was in school and we did like proper exams, um, I think for like, I think when it wasn't as known to the school as much, I was kind of in like a main hall with everybody else that was like a nightmare. And then once they kind of realised how much it distressed me, I got put into like a room on my own and I had to have a teacher, obviously, you know, observe me in the room, obviously, to make sure I wasn't cheating or anything. Yeah, kind of a room on my own. And that was like a lot better. And I did that for my final exams in school. And then obviously when I've come to college, well, luckily the course that I'm on, we don't have like final exams. What we do is we have like assignments and essays. We have multiple ones that we have to write over the course of like maybe two years. And then obviously all those little essays add up to like your final grade, if that makes sense.
Adeel [20:16]: Right, right, right. Yeah, okay. Well, it's great that at least you're getting something there.
Alicia [20:23]: Go on. Yeah, it's fine.
Adeel [20:25]: No, I was going to say, yeah, you mentioned a while back that you were maybe on the autistic spectrum. Is that an official diagnosis or is that something you're still working with?
Alicia [20:37]: I mean, I had a test when I was, I think I was about 10. And then they come back and they said that it was obviously just a miscarriage and I didn't have it and stuff like that. I've recently had an ADHD test to see if it was ADHD. But I do think I am probably linked to either ADHD or autism because obviously I know a lot of people who can have that. Obviously, I've got like sound, like they struggle with sounds and stuff. So I do think that could maybe be linked. Obviously, I've struggled making friends and, you know, just other things that I've had quite similar things, you know, in my life that have been quite similar to the symptoms of that. So I think potentially it could be that.
Adeel [21:22]: Oh, yeah, gotcha, yeah, yeah, definitely, like, yeah, you hear about autism, ADHD is definitely a common comorbidity, like, a common overlapping condition. Do you get any kind of other, like, treatments for any other kind of conditions, or is it mainly kind of misophonia that you're dealing with?
Alicia [21:42]: Do you know what cerebral palsy is?
Adeel [21:46]: Yes, yes, yes. Do you want to maybe explain it a little bit for the folks who might not know?
Alicia [21:50]: Well, I have that. So basically it is, it's like kind of, well, it affects like your muscles in your affected area. So mine's like my left leg and my left hand, but I've got it quite mild. So I'm quite lucky to be obviously in the position I'm in because obviously it does really affect me, but I don't have it as bad as what other people can have it because a lot of people obviously in wheelchairs and need a lot of one-to-one support. whereas I'm quite independent really obviously I do have my struggles and I do get tired when I walk and I get a lot of pain and stuff like that so it does affect me and obviously trying to keep up with other people that don't have it you know like when we're out somewhere and we're walking somewhere you know it does affect me quite a lot and I get tired and a lot of pain obviously and in jobs as well when sometimes the jobs are quite physical jobs where you have to be really physically fit and know you've got to be able to like run around and do a lot of that um a lot of physical stuff i can't really do as much as that um but i do try my best and i do push myself um but yeah that's like another thing that i do have as well gotcha was that kind of what the that um leg surgery was related to back back around when you That was my first one and I've had about six or seven. I've had quite a lot. But I've been doing quite well. I think my last one I had was like, was it like not last year, the year before. So I've done pretty well. It's all about building yourself back up to normal after you've had the surgery and stuff. But I've done quite well, to be honest. I'm obviously getting back on my feet and trying to just get out as much as I can. I think just learning to live with it is a big thing. I think learning to live with misophonia as well, that's another big thing. Learning how to deal with it and cope with it. Because in college, where I go, obviously we have lessons where obviously we have a teacher teaching us stuff and obviously we have to go and write essays about what they're teaching us and stuff. But obviously in those lessons, obviously it can be quiet at times. And I do struggle, but I do wear earphones as well, which the college have allowed. But yeah, I mean, I do still struggle with it in college quite a lot. And then sometimes I can even hear them over my earphones and I don't know how that's possible. But I can even hear them over like the loudest song. And I can have it because I mean, to be fair with my hearing, I have like, I think... I had a hearing test a couple of years ago and I had my hearing had gone down a little bit. So I've just been trying to protect my hearing a lot obviously because I do wear earphones a lot and obviously I don't want to become deaf or cause any, you know, a lot of damage. Um, right. So I've just kind of got to be careful. But then at the same time you just kind of want to turn it off and just like block everything out.
Adeel [24:47]: Yeah. Do you, do you also have the, um, music can you share like a, like visual triggers at all as well?
Alicia [24:54]: um actually I think I I did have one of them I don't know if it still affects me as much but it's like when I see people like it's not really as big as what it used to be but it was like when I see people cheering like it's not the noise it's like the face and like I don't know it just it does it's really annoying and I'm just like oh my god just stop but to be fair it doesn't really like I think when I was younger it bothered me a lot more but now as I'm older um it's not but I mean I think As well, my misophonia has improved a little bit since I've been put onto antidepressants as well. Because obviously I struggle with mental health and stuff. Because I've been through different therapies to do obviously with misophonia and for other things and how to deal with my emotions and stuff in general. I've had loads of different types of counselling and therapy and stuff over years. and um obviously because i'm nearly 18 which is like classed as an adult in the uk and obviously i did speak to the doctor and i was like i know you know you've denied putting me on medication in the past but you know i am nearly an adult now and i think you know i have been up through all these different therapies and i think it could really help and it might even you know obviously because your anxiety is linked with your misophonia as well
Adeel [26:10]: Yeah, there's definitely a lot of commonalities between the two, yeah.
Alicia [26:15]: Yeah, so I was like, if I can be put on these, like, antidepressants, which can also help my anxiety, because, I mean, the main thing of them is to help my anxiety and it's to help me, you know, to stabilise my emotions in general and stuff. And obviously I thought, well, if that can help my anxiety, then obviously the noises might not trigger me as much and I might not get as much anxiety. But, I mean, the noises have still been affecting me so much, you know, don't get me wrong, I've still been really struggling with them, but I think maybe a little bit, it has helped a tiny bit.
Adeel [26:51]: Are you able to, like, maybe recover, like, not dwell on the noises as much after?
Alicia [26:56]: Yeah, I think I'm a lot, yeah, I can get over them a lot quicker, obviously, after they've stopped or I'm away from them. But obviously it's still that kind of fight or flight, isn't it? When you hear the noises and stuff. You kind of just want to be on your own and be in a room on your own, just yourself in there because then nobody can annoy you and you can just be at peace. Do you know what I mean?
Adeel [27:20]: Right. Did you notice like a market... Was there a noticeable change basically since when you started taking the medication or are you still kind of thinking about it?
Alicia [27:32]: I think... I can kind of calm myself down a little bit quicker. And obviously, like, I think with the noises and obviously with other things in general, I don't get as, you know, agitated about. And I think the reactions that I have towards, you know, the noises aren't as big as what they were previously. So the reactions are not as, for me, obviously the emotions aren't as big that I'm feeling. Also, they're still very intense, but they're not as intense as what they were. And obviously, like, yeah, the way I'm reacting is a lot better, really. And I can kind of deal with it a lot better.
Adeel [28:11]: So before the medication, they must have tried different kinds of counselling, like, I don't know, maybe CBT or other kinds of therapies. Did any of those affect your misophonia at all?
Alicia [28:21]: I've done, you know, CBT quite a lot with, you know, different therapists. And I think the last one I did was... last February and I think he was like the first therapist that I've been to that actually knew what misophonia was and he even had it himself so you know I was kind of like really surprised and you know that was kind of a big thing for me obviously he struggled with it as well and obviously he had his triggers and it was kind of like he was saying that like exposure therapy is the best way to go about it but I have tried that over the years but it's not gone too well I just hate it so much I just hate it.
Adeel [28:59]: Yeah. That's a, that was a therapist in the UK.
Alicia [29:03]: Yeah. I mean, a lot of people in the UK have said, you know, exposure therapy is the best way to really go about it because obviously you can, you're training, you're retraining your brain to kind of see it as not a dangerous thing. You're seeing it as a safe thing because obviously your brain thinks it's a danger and it's, it's, you know, it's something that you need to look out for. And obviously it's not, it's just a noise. So you're retraining your brain.
Adeel [29:27]: Yeah, I mean, there's ways to do that without being full-on exposure. There's ways to maybe introduce a sound and maybe think about sounds a different way that could maybe help. But I would definitely advise against, like, you know, the people who say, well, just sit with the sound and just try to get used to it, habituate to it. That doesn't usually work.
Alicia [29:47]: I know, because it does trigger you quite a lot. But I think, like, I don't know. I mean, I have tried it. Obviously, it has made me worse. But I don't know. Maybe it could help in the future. I don't know.
Adeel [29:59]: Yeah. That's just the mark of a lazy, uneducated therapist. And I'll just put that out there. Yeah. Who says, just sit with the sound and try to get used to it. There are ways to engage with the sound. Yeah. That are a little bit more nuanced and more sophisticated. That could definitely work. And then you said, yeah, your parents have been pretty supportive. Is that, like, when they sniffle around you, like, what happens? Do they try not to? Are you okay with them, maybe, because they're supportive and they're trying?
Alicia [30:35]: I mean, obviously, like, I am really close with them. I feel like the people you're close with, you know, especially the people that you live with as well, you know, it's a different relationship you could have, maybe towards a close friend or a boyfriend or something like that. But when it's been to my parents and stuff, when they have sniffed, I'm just like, can you please try and not sniff, please? Or I'm like, do you want a tissue? And obviously they know it annoys me, so obviously they try not to. But yeah, when they do have calls every now and again, occasionally, I do just try and stay away from it. Obviously, because I do have my own life and I'm at college and I'm doing other things, I kind of just try and focus on that more. But I think when it's been like, when I've been in relationships with people as well, and they've sometimes done it, obviously like, because it's weird because I want to tell people about it, but then it's like, I don't know how they're going to react. Do you know what I mean?
Adeel [31:24]: Yeah, yeah, of course.
Alicia [31:26]: So it's like, they might think you're like weird or you're like a psychopath. And I'm like, no, I'm not. I'm a really kind person. I just don't like, these noises just bring out the worst of me. Do you know what I mean?
Adeel [31:37]: Yeah, well, yeah, I guess how do you tell people, like, new friends or new relationships? Like, when and how do you decide to do that?
Alicia [31:44]: I usually try and tell them, like... Well, it depends. Obviously, if they seem like quite an understanding person, obviously they might share some of their issues with me. Then I'll just be like, oh, well, do you find this noise annoying? And they might be like, yeah or no. And then I'll say, well, it really triggers me. And I'll just say, like, I've got a condition, but it really does annoy me. And some of them will be like, yeah, I'll try not to. And I've had a lot of people that have been like, yeah, I'm trying not to trigger you. And they've been really understanding about it.
Adeel [32:14]: Anyone who's not been?
Alicia [32:15]: Yeah, I mean, there's been one person recently. I mean, to be fair, that was probably one of the reasons we did the split up. It was quite recently. But basically, obviously, you know, I told him about, obviously, this is about my leg and my cerebral palsy. Obviously, he knew about that. And he started to make fun of that, which obviously a boyfriend should not be doing at all.
Adeel [32:35]: The cerebral palsy?
Alicia [32:37]: Yeah.
Adeel [32:38]: Oh, boy.
Alicia [32:38]: He was calling, well, because him and his family have a different, have quite a, what's the word, quite a different sense of humour to what we might have. Do you know what I mean? And their sense of humour is quite intense, if you get what I mean. So obviously I was kind of like, you know, don't, because his mum had broke her leg and he was obviously making jokes about obviously his mum. And she was fine with that because that's their humour. But then I was like, don't bring me into your family's humour when mine's a complete, your mum's broke her leg, mine's completely different. Do you know what I mean? I have to live with this for my life. It's completely different. So anyway, him and his family did stop about teasing me and different things. But then he moved on to the sniffing thing. And it was weird because I think I did mention it to him. And I was like, I don't know if I've mentioned this before, but this is something I do struggle with. And I just thought I'd tell you. And then the next day when I seen him, he just started sniffing really loud. But like, I just knew, you know when you know that somebody's doing it on purpose because he never sniffs, never ever does he sniff. And I just looked at him and he was like, what? And I was like... I know you're doing it on purpose like I'm not stupid and he was just like laughing going oh no I'm not doing anything and I was like you do know that's really triggering to me especially when you're doing it on purpose I said to him you know if you weren't I can tolerate it a bit more but obviously because you're doing it on purpose it triggers me even more and he was laughing and I was kind of just like this isn't really funny and then he was like oh I'm really sorry and he was just laughing and he kind of just seen it as like a joke then I was like my issue is a joke to you do you know what I mean yeah so is he like did you uh throw him out into the garbage and yeah i was kind of just like i can't be around someone you know that makes fun of my issues it's not it's not a good thing i said i've had a few boyfriends and none of them have ever done that so i was like that's instantly a red flag for me yeah yeah big big bright red flag
Adeel [34:35]: um interesting okay okay yeah no it's always interesting how uh if and how people um bring it up with uh with friends or any anybody um because it i mean you're still young but a lot of us we We dealt with a lot of people shrugging it off. So at a certain point in your life, we kind of just don't even bother unless we have to bring it up.
Alicia [35:00]: Yeah, it is quite difficult, though, obviously, for people to understand. Obviously, you don't have it and they don't understand the impact that it has. And it does really control your life and just how you function and how your brain functions in life.
Adeel [35:14]: Do you have any other coping methods or therapies that you've heard of maybe that you want to try?
Alicia [35:19]: Yeah, I've tried hypnotherapy. I've heard that that was good. But it's quite expensive, obviously, because we pay for private and stuff. It's not through. Because we have a healthcare thing where we get free healthcare. But other things obviously aren't covered by that. So this is one of the things that isn't covered. So therapy and stuff is usually covered. by the NHS which is like a free healthcare thing that we have in the UK which is quite good then obviously private therapy is obviously you have to pay for and obviously like hypnotherapy you have to pay for but we did try hypnotherapy for a few months actually and how did that go like what was that was it specifically for misophonia yeah it was for that really and it was kind of like retraining your brain to not think of it as a threat and stuff like that really and I had to listen to like what's the word like like recordings of just like of the woman like you know doing like a lot of like soft talking and kind of I think it was more obviously getting the anxiety away first and then obviously like addressing that and just trying to think of those situations where you're getting triggered in a more relaxed way because obviously you're more grounded and things like that Which, it didn't really, I mean, to be fair, it did help with my anxiety a little bit, but it didn't really help with the noises or anything.
Adeel [36:42]: Do you remember what the process was? Like, you'd go under, and then she would play sounds, and then tell, or then talk, and then...
Alicia [36:51]: make um statements saying like this is okay or something like do you know what she was doing it was a bit similar to that and then obviously i'd have it on recordings as well so obviously outside of oh you have it you have recordings of it so obviously she'd do that in the session but then she'd record it so she'd be like listen to this a few times a week and then you know just kind of get your mind you're relaxed and used to stuff but it didn't really work like i've had um i think it's something to do with like your eye movement or something i think where you like you move your eyes to like a pen or something it's meant to like change i don't know yeah i've tried that yeah i think that's uh right uh emdr yeah yeah that's it yeah yeah uh so you've tried that through a therapist or yeah that was through a therapist but um she was saying it would take a couple of sessions probably to see a result but we did do a few sessions i didn't see any benefit or anything anything really from that
Adeel [37:47]: Okay, okay. So I guess going forward, it's mainly going to be maybe, you know, the staying on medication, but then just... Yeah.
Alicia [38:00]: just just living in your ear like earbuds when you need to yeah and trying to protect your balance your ears with uh with the sounds around you yeah i mean and as well like i did ask my doctor if i could like obviously go up on the dosage but obviously because i am under 18 so i'm not classed as an adult yet um they were quite obviously with like medication and obviously with like young people they don't really like doing it because usually when people get put on like antidepressants and medication it's usually that they end up being on it for the rest of their lives so they don't they try not to put people on it for so long so she was kind of just like no because you're kind of like you're not 18 yet but maybe when i'm 18 i might be able to try a higher dosage to see if that helps even more or maybe just trial it and just see if it does help more because it could do if it's lowering my anxiety
Adeel [38:50]: even better than here they here they'll here they love to put people on on drugs like that yeah but i know i know a lot of people go on and then they go off um you just have to do it carefully i think but uh um but yeah i it's usually not used for misophonia but so i was just curious to hear what your experience is um because obviously like because that's what she was saying to say oh it's not gonna you know cure misophonia i said i understand it's not gonna cure it and i'm not kind of
Alicia [39:15]: I'm not like looking for it to cure it, but I just thought obviously because anxiety, and I do struggle with anxiety anyway, anxiety and misophonia is linked. So maybe if it calms my anxiety down, then I won't be as anxious around the noises. Or maybe I won't notice the noises as much if I'm not as anxious and on edge. So that's why, you know, it has helped a little bit. I wouldn't say a massive difference, but maybe a tiny bit. But it's definitely helped with like noises at home as well, like The noises at home don't trigger me as much as what they used to. Obviously, I've been on medication. But obviously, as far as the sniffing goes, it's not really been a massive change with that. Maybe a little bit, but not a big change.
Adeel [40:01]: Do you have any siblings?
Alicia [40:04]: No, it's just me. I mean, I'm quite lucky to not have any siblings because usually people are like, oh, yeah, I'd hate to have that. But no, I'm just on my own. But, yeah.
Adeel [40:13]: Yeah, cool. Okay, yeah, a sibling could end up being a trigger and or a bully.
Alicia [40:18]: Yeah, exactly.
Adeel [40:19]: You know, in the early years, in the early years at least. That changes in the future. So have you talked to anybody else about misophonia? I guess you've mentioned it to some friends. I'm wondering if this is something that you kind of try to educate people about in general or no?
Alicia [40:38]: Not really. I mean, I try not to share it with people if I don't really have to, yeah. Because I feel like, you know, different people have different reactions. Some people might laugh and make fun of it. Or some people don't take it seriously or they don't. You know, I just feel like, I mean, it's something that I'm quite, I mean, I'm probably more open about my leg and my cerebral palsy rather. other than misophonia because obviously I've got to be a little bit more open about my physical disability because it does affect me a lot more than what my misophonia does maybe because it's more physical if you get what I mean so it affects everything else so I'm kind of a bit more open with that with people because I kind of have to be so they understand when I meet them and stuff but for my misophonia when I meet new people I don't really tell them to be honest unless I feel safe around them and I feel like
Adeel [41:30]: the kind of person that would understand if that makes sense yeah yeah i mean this seems to be pretty active community in the uk from researchers down to like misophones i don't know if you're on like um uh some of the there's like a uk misophonia facebook support group i don't know if you're in there but and there's probably a lot of people
Alicia [41:50]: even in your area who have misophonia that you can maybe connect with i think i might be on on that group i'm not too sure i am on a few groups online and then i did um join one last night um i've seen this girl on the tiktok live and she was obviously from like the us and um she she's got a facebook uh misophonia group and obviously it's all based in the us and they're all from over there but you know it is still helpful even if they're you know from I feel like this podcast has been helpful. I've listened to a couple of sessions of this. I was following that Misophonia memes on Instagram. I think it's a girl who runs that account, and then I seen that she was on this podcast.
Adeel [42:31]: Yes, yeah, Chloe. Yeah, no, she's great. Yeah, that's cool. Yeah, there's a UK Misophonia Facebook group. And you mentioned TikTok. I was going to ask, I'm not on TikTok that often. I mean, I have an account for Misophonia podcast, but what's it like on TikTok for Misophonia? There must be a lot of people explaining it or maybe...
Alicia [42:55]: talking about their triggers or maybe triggering is that uh you know a good source of information um yeah you know what's what's that what's miss funny tiktok like these days i mean i've like obviously searched online to see obviously what people are saying about it and you know the videos they're making about it and i do feel like quite a lot of them are helpful because you know you are you know you're finding other people that have the same experience as you and stuff but obviously you can't search for misophonia well you can but like it's different obviously on Instagram and stuff it's more kind of just like memes and stuff for misophonia whereas obviously the TikTok videos are more like people explaining how they react with it or situations they've been in or they're explaining it or whatever and I feel like that is you know really helpful to obviously see that there's a lot of people that are you know that have the same issue and you know that they understand how it can you know how much it affects your life and their life and stuff
Adeel [43:50]: Well, cool. I mean, yeah, Alicia, this has been super helpful and great. And we covered a lot of different topics that I think will be interesting to folks. Yeah, I don't want to put you on the spot again, but if there is something you want to share, closing words, let us know. Otherwise, it's been great to have you on.
Alicia [44:11]: Yeah, thank you so much.
Adeel [44:13]: Thank you again, Alicia. I hope you have very quiet and healthy years ahead. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hellomissiphoniapodcast.com or go to the website, missiphoniapodcast.com. Easiest way to send a message is probably on Instagram, at Missiphonia Podcast. You can follow there or Facebook at Missiphonia Podcast. Twitter, it's Missiphonia Show. Support the show by visiting Patreon, patreon.com slash missiphoniapodcast. The music as always is by Moby, and until next week, wishing you peace and quiet.
Unknown Speaker [45:23]: Thank you.