Loading...
Loading...
Adeel [0:01]: Welcome to the Misophonia podcast. This is episode 214. My name's Adeel Ahmad and I have Misophonia. This week I'm talking to Carly. from up in northern Alberta of the great independent nation of Canada. Carly shares her personal misophonia journey, her experiences with various therapy through the years, and her path to self-discovery and understanding her neurodivergence. She highlights the importance of nervous system regulation, the impact of trauma, and the need for supportive environments in managing misophonia. We talk about autism and ADHD and the recurring topic of family dynamics and emotional availability and her new focus, which is to turn her learnings into a coaching platform to help others figure out their own individual paths to healing. I'll have her links in the show notes and on social, but you can reach her at womenunmasked.ca and womenunmasked on Instagram. After the show, let me know what you think. You can reach out to me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please head over, leave a quick rating wherever you listen to the show. It really helps drive us up in the algorithms and reach more listeners. A few of my usual announcements. If you want to come on the show, simply go to misophoniapodcast.com and click the Be a Guest link. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophoniapodcast. All right, now here's my conversation with Carly. Carly, welcome to the podcast. Great to have you here.
Unknown Speaker [1:55]: Thank you for having me, Adeel. It's an honor to be here today.
Adeel [1:57]: Awesome. So yeah, well, do you want to tell us kind of roughly whereabouts you're located, a little bit about what you do there?
Unknown Speaker [2:06]: Yeah, so I'm located in Red Deer, Alberta, Canada, which is about halfway between Edmonton and Calgary. So it's just a little, it's a bit cold here right now, but it's a beautiful place to live. Yeah, I have a degree in environmental sciences. So I went to college here in Alberta. And a couple years ago, I finished my degree in environmental management. So I... have a degree in reclamation and remediation. So I do, um, oil site reclamation and such like that. Um, currently on a bit of a hiatus from that, but yeah, that's part of my story today, I guess.
Adeel [2:42]: That's cool. Yeah. I, I, a couple of years ago, I think I, I spoke to a nurse up in Northern Alberta. So, um, yeah, there's, there's, there's definitely missed phones around.
Unknown Speaker [2:54]: Yeah, and it's actually, I was thinking about this this morning. This is the first time I've ever actually had a conversation with someone that I know has misophonia. So it's pretty interesting, actually. I'm sure there's so many people around me, but it's such a hush-hush thing, or it was for so long that it's been difficult to connect with anyone who isn't just, you know, oh, I experienced that too, but do you really?
Adeel [3:15]: Right. Yeah, we know that. So, yeah, I guess maybe starting with kind of what's going on these days, misophonia-wise, how are you affected? How's life?
Unknown Speaker [3:27]: Um, these days, I've really started to get a control over my misophonia, which is something I couldn't say for 30 years. Things have just been so jarring and traumatic in my life lately that I've really had to dig in and get to know myself a bit better and get to know misophonia a bit better. So yeah, these days are quiet for me. I'm learning how to regulate my nervous system. And I'm on a six month hiatus from work just trying to really dig into what's important to me right now. I'm really moving in a different direction with my life lately. I found that I experienced a pretty traumatic job loss last summer. I was fired and it sat really heavy with me for a long time to the point where I actually had to take some time off and decide what was in alignment with me. And what I've kind of come to terms with is that a fast paced life isn't working for me and a corporate life isn't working for me. So I'm moving into a setting in a business. I'd like to do some online coaching and create some resources for women with any sort of neurodivergencies and especially with misophonia because it's been such and has such a profound impact on who I am as a person in my life that I can't help but want to share more with other people.
Adeel [4:44]: Yeah, and you know, there are some people who, some other people who share not a totally dissimilar situation and are also looking at connecting with other people who might be interested in this kind of coaching. Actually, maybe I can, I don't know, maybe I can connect you. Also miss the phones.
Unknown Speaker [5:03]: Absolutely. I would be so interested because I feel like there's just this complete misconception about how to work with people with misophonia. And I think that coming from an experience of having lived it, it provides such a different insight into the condition and into the way the brain works, how the nervous system works, how trauma influences us. All those things that are combined create this really interesting lived experience that, in my opinion, a professional could really never imagine. truly understand.
Adeel [5:35]: Yeah, those are all my favorite topics and I couldn't agree more. Why would you say that a professional could never truly understand? Have you gone to therapists and stuff and found that they try to pull you in one direction or another?
Unknown Speaker [5:50]: Yeah, that's exactly the experience. I mean, so if you don't mind, I'll kind of go back in my story a bit.
Carlie [5:55]: Yeah, please.
Unknown Speaker [5:56]: So my misophonia was very, very, I guess I'd say, quote unquote, normal in the start. So it started around the dinner table with triggers with my father and the rest of my family as well. But I grew up with such a wonderful family that... i just held a lot of the shame on my own and i i kind of just sat in the discomfort of it for a long time because i was so afraid to like ruffle feathers and when i finally um started to get some help i went down the route of you know i started with a family doctor who of course had never heard of it and he said go see the therapist it seems like maybe you have a mental health condition or some sort of underlying anxiety and I mean, I could agree. I probably had a lot of anxiety, but I went to a, sorry, he also recommended an audiologist, which was, I'm sure as many people know, which was not the way to go, but they recommended therapy as well. So I went to a therapist.
Adeel [6:53]: They wouldn't know back then. I mean, back then we had a lot less information that probably made sense.
Unknown Speaker [6:59]: Well, exactly. And they were kind of confused why I was there. You know, they did a hearing test and they're like, no, you have perfectly fine hearing. So maybe there's something wrong with the way your brain processes it, which is the reality in reality, the truth, but it was so interesting. So I went to therapy and of course they had never heard of it again, which is such a. invalidating feeling to tell someone your symptoms and to have them say mmm are you sure or you know it just it's never been a validating thing for me so they suggested one of two routes they said you know cognitive behavioral therapy or exposure therapy and quite frankly exposure therapy to me was like no I would rather suffer with this every day than ever consider that so and i did a bit of um cognitive behavioral therapy but i found that i was so intelligent and so highly masking in my condition that i actually kind of mastered therapy so i was able to like kind of just like tell them what they wanted to hear i wasn't really speaking from my heart i kind of saw it as like a I have to prove my worth to this person. So it was a really kind of backwards way of thinking of things, but it didn't help me because I was able to just tell the therapist what she wanted to hear.
Adeel [8:12]: You know, I started to interrupt, but that is, yeah, that is kind of like how I've kind of, you know, I don't think all CBT is like that, but I think that's how, you know, I've kind of interpreted it. And I felt, I always felt like it was, you know, it was kind of a test that I needed to overachieve. And so I just kind of like, like a test from school. And so I just kind of, like you said, like, just like tell people what they want to hear. And I just kind of, wonder with you know with it being called kind of the gold standard of therapy is there some of that being biased into it i'm sure somebody's looked into that but i don't know still the feeling sticks
Unknown Speaker [8:53]: Absolutely. And I just, I found that I was not getting anything from it. So for a long time, I shut myself away from any sort of therapies. And I guess that's what I mean when I say that there's, I struggle to understand how a therapist can really help someone with misophonia because that lived experience is so important. Like the disgust and the anger that you feel from the most minor sounds is... hard for any sort of mind to understand quite frankly and that's a big part of why I've always had a problem with expressing it to people is because it makes no sense so that's like imagine having type 1 diabetes and they don't know what the pancreas is they don't know what insulin is like it's it was terrifying for me and it was really hard and my parents did their best but you know there was a lot of shame and there was a lot of um confusion but we it was the early 90s or sorry the late 90s like early 2000s so people like my parents had no way of knowing how to deal with it they were confused they considered it growing pains they considered it um just like um yeah dramatically acting out and i can understand that like it's it was likely just as traumatizing for them as it was for me and so moving through my journey i I really internalized the entire thing. I had no interest in the outside world helping me because I was so ashamed of what I was going through. And for me, misophonia has been crippling, quite frankly. And I'm in such a beautiful place now with it that I've come to terms with it and put in a lot of coping mechanisms for myself. But at the same time, it's just been... for so long i internalized it and i was so so disgusted with the way that i felt inside and i didn't know how to express that and i you know i tried a lot of desperate things i purchased a 1600 pair of um like noise making um hearing aids like i've i've really gone through the ringer of desperation trying to solve this for myself i in my early 20s i went to I guess a hypnosis kind of vibe. So I found a lady in Calgary that does hypnosis for misophonia specifically. And I was like, all right, this is the first time I've ever heard someone say that they are an expert in this. And I went and it was... It was interesting. I think it helped calm my nervous system a lot. But I just was so unfamiliar with the concept of trauma, with the concept of nervous system regulation, that I didn't get anything out of it at the time. And I think had I gone back and done it now, it probably would have been a lot of a different story. But I was just not in the place where I could associate with trauma or I could associate with anything. I just knew there was something wrong.
Adeel [11:42]: Yeah, I think there is a process or journey of first psychoeducation that needs to happen to get you ready for whatever the modality is that's going to help you. And this kind of bothers me about therapy or any kind of medicine in general these days. It's like you kind of get... you kind of pick, you kind of are given a doctor sometimes bias, a referral or something, and you just go down that route and it might not be the, uh, the modality that works for you. Exactly. By spending the money or just getting, uh, I don't demoralized.
Unknown Speaker [12:21]: I've spent thousands trying to solve this problem, but I just, I don't know. I think that, um, so I've been married now for two and a half years. And I think that my marriage was a really big turning point for me in terms of, um, going from an internal perspective of it to actually like talking about it and diving into it and being proud of it because there's a connection in my life that was quite different for me so uh last year I was diagnosed with autism level one and I've noticed now that um as well I really resonate with some of the symptoms of ADHD and that's how misophonia created this beautiful person that I am because I had this journey with trying to understand misophonia and through that journey I understood that oh I also have a lot of other sensory quirks and I also have a lot of communication challenges and a lot of challenges in my daily life just existing authentically and through a search on social media you know over and over again I started to resonate with the experience of autism and I thought you know there's a good chance that that's what I have. But I was really scared to put that label on myself without having an actual diagnosis because I know that there are people with different types of autism than me that struggle in such different ways. And I didn't want to perpetuate anything in terms of associating with something that I didn't necessarily have. I just felt I had. So I did go forward and get a formal diagnosis eventually that really put a lot of things into perspective for me in terms of my misophonia.
Adeel [13:59]: gotcha okay and you say um yeah i mean these are comorbidities especially the adhd with misophonia that that pops up a lot and uh yeah i mean i i'm curious what you said about um you're in a beautiful place with misophonia um is is a lot of that basically that stem from you know the uh self-reflection of just the whole journey since the uh
Unknown Speaker [14:23]: The events of last summer that kind of like... Yes, I think I was really starting the healing before that. I discovered loop earplugs just over a year ago now. And quite frankly, I mean, this is dramatic, but they changed my life. Just having this ability to control some of the sound a little bit has really made my life easier. And a large part of my journey over the last six months has been... learning how to regulate my nervous system and digging into trauma. And I can't even begin to explain how those two things are the root, in my opinion, to understanding how to deal with misophonia. Because when I'm dysregulated, I am... way easier way way sorry how do I say this I am much more likely to be triggered and much more intensely when my system is dysregulated and I you know I dug into a lot of the concepts with trauma and I don't think before that I ever understood what trauma was I understood that you know there's these big big T traumas that are You're in a car accident. You were abused growing up, many other triggering things. But I didn't understand little t trauma. And as I get older, I see it everywhere. My entire life was a pattern of these little traumas that were just becoming bigger and bigger and bigger. And I think that it's important for people to know that every time you're triggered, from your misophonia, it's creating more layers of trauma in your system, especially if you're not processing the energy in a good way. So I recently heard on your podcast, someone was speaking about the importance of like expressing the anger and that I couldn't agree more. Like you have to let it out of your system or it sits in there. And the hypnosis I did back in the day, she was really trying to get me to dig into like the roots of my trauma. And I just didn't understand because I had such a wonderful childhood. I was bullied a little bit, but I didn't notice how big of an impact that had on my life. And I had no idea I was traumatized until recently when I started to really heal my nervous system that I noticed that these triggers are constantly traumatizing me. And I had to choose essentially to let them continue to traumatize me or to actually process this energy.
Adeel [16:51]: get to a place where i don't feel so mad all the time right yeah and um no it's interesting because you did say because if you've heard episodes of the podcast you know a lot of people have um experiences from childhood which were really walking on eggshells tants uh small t trauma but people know people come on and they have you know totally wonderful smooth childhoods from what they can remember Do you remember anything other than the bullying? Do you remember, or maybe specifically about the bullying and how maybe teachers or caregivers kind of helped you or didn't help you process that? Do you remember any other events or environments that would have been challenging for a kid who might be trying to understand what's going on around them?
Unknown Speaker [17:43]: Um, not necessarily for me, it was definitely, I underplayed the bullying was a big thing. You know, I didn't understand how intensely that influenced me. And it's, it was a big part of creating the mask in my life. You know, I consider myself having high masking autism, which is like the ability to just mirror. I could mirror any situation, any person. I could be anyone I wanted to be. I could convince anyone I wanted to like me if I wanted to because I was conditioned to feel that if I wasn't what other people wanted me to be, that I wasn't valuable or that I didn't have any sort of value linked to my characteristics. So my masking is what... like that trauma that I experienced during those ages of like 12 to 13, as I thought in my heart that it was like, everyone gets bullied, everyone goes through this stuff, but it completely changed how I identify and how I express myself in the world. And it was all comorbid with the timing of my misophonia showing up. So my home life was really traumatic. My school life was really traumatic, but I wasn't able to actually recognize that those were traumas. I just thought that they were things that all kids went through.
Adeel [18:56]: Yeah, so you didn't tell anybody about what was happening?
Unknown Speaker [18:59]: Certainly not in terms of friends. I was very ashamed. My parents knew, but like I said, they just thought it was me being a dramatic teen or me. They really didn't understand that there could be something more than just an attitude problem.
Adeel [19:15]: Yeah. And then as you got older, you go to high school, post-secondary, how did it evolve? Did it kind of subside a little bit?
Unknown Speaker [19:26]: For a long time, it did subside because I guess I was living what I would call like an easy life. You know, I was quite privileged and I was school was a bit difficult, but I was really intelligent. Like my IQ is extremely high because I do have these autism traits and I just I don't have the most common sense. I don't always have the basic day to day knowledge with my peers. I, you know, I don't really understand sarcasm sometimes. Yeah. Yeah, no, exactly. But I always thought I was because I was able to chameleon into anybody that I wanted to be. But then I started to learn in my late 20s that I was exhausted. That was a big part of it. As these intricate layers of adulthood came into play, you know, I had a job. I had these relationships. I had to deal with my own money. I had to be... emotionally intelligent all these layers that started to build in my life suddenly it wasn't so easy to hide these things and you know I went to college a little bit later I was about 25 but college was an absolute nightmare and I just sat through it in discomfort I don't think I really understood that people lived their lives comfortably like I just constantly sat in discomfort if I didn't like the sound someone was making like I felt like I had absolutely no control over that sound and the reality is I didn't have control over the sound but I had control over what I was putting myself through and I didn't for a long time I was just so concerned about with how people saw me that I wasn't willing to admit that I was having issues. I just sat through them in such discomfort and it just kept bottling it up and pushing it down and layering it on. And it just, I eventually, I just, I couldn't do it anymore. You know, my marriage was struggling. My life was an absolute hot mess because I wasn't dealing with any of the internal feelings. I was just living outwardly.
Adeel [21:26]: Gotcha. And when did you find out it had a name then? Because it's getting to be around that time or close.
Unknown Speaker [21:35]: I was actually really quite young. So I think for a long time, I considered it just like HSP, like highly sensitive person. And that's something that my mom's always been my biggest supporter. And her and I were always on like the same page of like, there's something a little bit different about my system, but it didn't ever feel like it was enough to actually put a label on it. And I know that labels can be really... is a really difficult topic for a lot of people but for me it was necessary i needed the labels to be able to have the vocabulary i needed to explain what i was going through because i think that my whole life i was dysregulated i was hitting periods of burnout and meltdowns and i just didn't have the words for it neither did my family so we related it to like a highly sensitive person thing for a long time and then probably in my late teens i think I found the term online and then my mother and I, we dove really deep. And I think we listened to every episode of your podcast at that point. So we just, I think it gave me so much hope to learn that it wasn't in my head and it wasn't a mental health condition. Those were two things that I always connected with was I always thought that I was deeply depressed, had insane anxiety. I thought I had bipolar. I had these... diagnoses that were diagnoses that were put on to myself from mental health professionals that just didn't understand what i was really going through and they you know they considered me too social to have um autism which i realize now is extremely hilarious because i'm social because i felt like i had to be you know my my true person is very very um internally reflective and very kind and gentle but for 30 years I was so dysregulated that I don't think I could associate with those words I was frantic I was angry and I was disorganized and that's how I felt for so long
Adeel [23:27]: Wow. Okay. Yep. Yep. Um, yeah, that's so many, so many things with, uh, myself and a lot of people who've, uh, we've come on. Um, okay. Yeah. So you, you found out how to name, um, did you then, I guess, what did you do then? Did you pick up new coping methods, try to seek out, you know, more therapists who knew about misophonia or, or by that point, you'd kind of like figured out that like in your adult, early adult, you'd figured out that you're going to have to,
Unknown Speaker [23:56]: deal with it on your own yeah so i i think a lot of not going forward with any more help was a financial thing you know i was in college and it was difficult to explore it was difficult to like just dip my toes into anything and i i did do a bit of therapy but honestly to my therapist i just didn't even talk about misophonia and i think that that's kind of crazy to hear myself say now but at the time I had so many other things going on that it felt like just this like minor thing that I oh yeah I also can't stand all these noises I can't stand all these things but but that's just a minor details part of my personality you know that's what it felt like for a long time but When I got married and I started living in close quarters with someone, that was when it really like hit the fan for me. And I remember spending a lot of time. I'm sure a lot of people can relate to this, like our safe people or sometimes the people that we're the hardest on. With my husband, you know, the littlest noises I'd be, oh, go, can you not do that? Can you just do that in a different room? And I, for so long, made him feel a certain way because I wasn't dealing with how I felt inside.
Adeel [25:08]: Yeah, how did he take some of that?
Unknown Speaker [25:12]: You know, he's one of the most understanding people in the world, first of all. So I'm so lucky. But it was hard for us. It was confusing for him. Honestly, just as confusing as it was for me. But we just kind of worked through it slowly. And like I said before, the loop earplugs have changed my life. I wear them... 24-7 when I'm around any person and it's just I wear the switches so I can go from like really quiet to just a little bit of noise that comes through and I find it just gives me this little bit of peace that's like okay I might hear the trigger sounds but they're not so intense like i they're still existing but it's not like it's attacking my entire nervous system and nervous system regulation is the absolute key yeah to living with people i like i just i am a nightmare when i'm not regulated and i can't really make full points when i'm not regulated and i find that i'm just like angry when i'm dysregulated and as soon as i get regulated i'm not saying the noises go away but the way that my system reacts to them is substantially different
Adeel [26:22]: Yeah, you don't have to try those earplugs again. Because I always thought, oh, I'll just throw some music on with AirPods. But then I have to keep those things charged and pick a playlist and stuff. And then a song ends and then it's something super quiet.
Unknown Speaker [26:39]: That's such a relatable experience. I've tried headphones and I tried, I believe they're called the flare ones. And I didn't like the flares because they have like an opening. And I felt like I couldn't. like plug my ears if I needed to which is a really like hard thing to explain to people but it's the loop has just made it so that I can actually be around people and I had the most wonderful experience this summer my family is just another part thing that I wanted to point out is that as other people have said is your environment dictates so much how you manage misophonia because the people around you if they don't understand and they're not willing to understand it's going to make your life a lot more difficult and this summer I was I spent some time on Vancouver Island with my parents and yeah they live there it's wonderful but my dad and I went out for a meal at we had lunch together on the harbor and afterwards he looked at me and he said, wow, I can't believe I just had a meal with my daughter. It was just, wow. I'm just, you know, it like, it brings tears to my eyes to even think about it, but he was just so honored that I found a way. to be around him and to be more comfortable around him. And it just blew him away. And it blew me away that he noticed, you know what I mean? Just like, like, yeah, like, yeah, dad, it is. It's, you know, it is difficult sometimes to wear headphones 24 seven, but it allows me this beautiful or sorry, earplugs, but it allows me this beautiful experience of actually getting to be a part of a meal for once. I am the type of person who sits in a different room for meals because that's just how I've learned to cope with it.
Adeel [28:18]: Right. No, that's powerful and, yeah, very relatable and understandable. Speaking of the nervous system, you know, a lot of people, I talk about it sometimes, if I can predict that I'm entering a difficult situation, I try to do a little self-talk and try to remind myself that I'm not going to be in danger. just to try to, A, calm my nervous system down, B, soothe that inner child, whatever you want to call it, that self, that everything's going to be okay, that no one's going to come and attack you and kill you. Is that relatable at all? Do you do any of that to try to chill out a little bit? Yeah, that's exactly it. Chill that amygdala out, yeah.
Unknown Speaker [29:07]: Yeah, because, well, our whole childhood, we were just, like, sitting in that fight or flight response waiting for that pain to hit your system, right? And that's, I think, what people don't understand is it's pain. It is not annoyance. It is not inconvenient. It's painful. It's extremely painful. And... The nervous system regulation thing for me, I think was truly, like I said this before, truly, I did not have a regulated nervous system for at least 30 years of my life. I was living on an edge, on a high of anxiety. And for me, it's little things like... before a conversation or before dinner i'll just do a full body shake out i will um you know get all my extremities moving i might do some sort of like vagus nerve stimulation where i um there's lots of different exercises they're hard to explain over a podcast but um just the little tiniest things that seem so insignificant first time i ever felt regulated i remember Being kind of confused, my pace and my tone was very slow and very calm. And I was used to like, da-da-da-da-da-da-da-da-da. My normal pace is really intense because I'm an intense person, I thought. But it's actually this intense state of dysregulation where when I... I'm talking to someone and I'm dysregulated, I'm like, I'm sure the energy is actually frightening. Like it's a really intense energy that I present with. But when I'm calm and in a calm state, my energy is calm. My tone is slow. I just have this vibe about me that is so different from any vibe I've ever felt in my entire life. And so... being regulated has brought me this gift of and like mind you I really am in the depths of still understanding it but what I've learned so far has brought me a peace and a calm and it's taught me that I can I can control anything I want to if I go inside you know instead of throwing a band-aid solution on it like asking them to stop or freaking out I just I go inside and I say Okay, let's sit with this. Let's sit with this anger. And that is uncomfortable as hell for someone with misophonia. But it is changed the way that I view all my relationships and the way I enter any sort of situation where I know there's going to be triggering stimulus.
Adeel [31:29]: yeah yeah no it's it's important to kind of like uh just be in touch with yourself and uh um because you i mean yeah you're you're inside of you it's an entire system so if you can uh work on that uh work on the parts that might get my, my, you know, light on fire. I think that's, uh, it's important. Um, very interesting. Um, so in terms of like, um, do I talk about, you said you're mentioning coaching. Are you planning to actually turn to a business? Do you have any plans for, for what you want to do there? Um, and yeah, just kind of curious. Cause, uh, yeah, there's, there seems to be a, uh, an interest in a need, a need for this kind of work. yeah thanks for asking uh that's exactly where my brain goes so while my my heart and where i lead can i pause one more thing when you were uh when you were talking about that um intense like energy this this crazy kind of energy that people must be seeing like uh um I totally agree. And I sometimes think about how can I boomerang this into something productive? And for me, I'm a software developer. I have all these entrepreneurial ideas. So I sometimes really intentionally try to focus that energy. If I'm super triggered, I'm like, I'm going to try to bottle this energy for later and I can bang out some ideas. I think whatever people could do to turn that energy into something productive, maybe entrepreneurial, or maybe starting a coaching business, I think is an amazing thing to do to help diffuse that energy.
Unknown Speaker [33:11]: Yeah, so I feel the exact same way. I just, I know that I wondered for a long time, like, what is my gift to the world? Like, what is my purpose? And I tried to, like, force a purpose of, you know, I'm this corporate badass that gets stuff done. And I tried to, like, really associate with that. But as I, like, tried to get more intentional with my... with my being, I realized that my gift is actually empathy. I have this beautiful ability to connect with people and to provide kindness to people in a way that maybe they've been missing out for a long time. And so, especially with my autism traits, I want to... help women take that mask off it's a big part of it and i say women specifically because my experience is as a woman so um i just want to provide a space for women where they can come talk about neurodivergency in a really different light. And the gap that I want to fill is, so you are in the middle of your life, you get diagnosed with autism, ADHD, what have it, what's next? So that's where I want to sit in the industry is I want to help women decide what's next. I want to provide them with validation and reassurance, number one, to let them know that this is something that is absolutely common, even though it might not be common in your everyday There are so many women that feel the way you feel. I want to help them understand the difference between traditional medicine and alternative medicine and ways that they can go about this without the traditional therapy. Sorry, I'm just trying to think like very traditional routes of how we deal with autism. And I want them to understand that there's much different ways. So like Reiki, acupuncture, nervous system healing, trauma healing, all these things that I don't think they've ever experienced or been had the attention brought to. So I want to provide a space for them where they can be coached through the next little bit of their life. They need to. I personally needed. an advocate, I needed someone to say, OK, here's your options. Here's what I've tried. Here's what works. Here's what doesn't work here. Here's what maybe I would suggest for you. I want to provide them that coaching space. But then in the same thought, I also really want to advocate for women with misophonia and for people with misophonia in general. And for me, that looks like putting together courses for surviving it with coping mechanisms, things people have tried, what hasn't worked, what has worked. But as well, I want to put together space for parents of children with misophonia because I think that there's a coaching space available as well for the parents where they are just so misguided and so lost about how to help their child or their teenager.
Adeel [36:09]: Yeah, you're right. There's all these, you named a bunch of modalities and philosophies and whatnot. And it's hard for people to decide what's going to work for me before I throw down all this money. So I think it is, I know it's useful to have that middle layer to kind of help guide people. You don't have to work with them for years. It can be fairly quick. But, you know, or some people will be, but I think that guidance is needed. And I've actually heard from actual misophonia therapists because there are so few of them that understand what's going on. They're overwhelmed. They have a waiting list. Oh, I can't imagine. And they've told me that, they've told me like, they've even asked me, I don't have time, unfortunately, but... um you know it'd be great to have somebody kind of triage those you know uh you know my waiting list basically and guide them to maybe work on this first before you come to me kind of similar experience that kind of you know that is exactly what i was getting at exactly
Unknown Speaker [37:18]: It's like a transition between, okay, so I have this diagnosis or I have this condition, but where do I go with it? And like you said, like it's a financial thing. Like I've spent thousands on things that haven't worked, but in that money and that time that I've spent. I've come up with a lot of cool things that really do work and like just simple things like going to an acupuncture session to reset your nervous system. Like that provides me with three or four days of peace. You know, like there's all these things that people are afraid to try because it's expensive that might be considered, you know, like woohoo or whatever, but there's just this beauty to digging into your spirituality. I think the term is woohoo. Yeah, woohoo. I say hooey-dooey. Yeah. There's a couple of them, but yeah, it's just this, this, I think that leaning into spirituality and getting to really know yourself is a big part of that too. Like I didn't associate with spirituality until the last six months when I realized that like, giving over your power to the universe is actually a really beautiful thing because instead of trying to constantly control my outcomes, I'm just here to learn the lessons and to let the outcomes come to me. I want to experience these crazy situations where I just am learning, learning, learning, learning because I feel like that's how you grow and that's how you find out who you really are.
Adeel [38:41]: Yeah. And, you know, I've said this before, like, you know, we kind of like, well, the general public, I think, you know, hears about their, or they talk about their misophonia as a nail that needs a hammer to just kind of like, you know, take it out without necessarily like maybe thinking about it in a more deeper level, like you just expressed as a kind of a gateway to... to do this exploration. And maybe that's part of it is your body telling you to do that. And if that's the case, it's not such a bad thing. Of course, we want to work under misophonia and not be triggered. But, you know, there's a silver lining or maybe a purpose in some way for some of these things like misophonia. I'm curious, if you didn't have the loop plugs, do you feel like your overall, at an objective level, your misophonia now, these days, after having done all this and being in touch with your nervous system more, is generally better off?
Unknown Speaker [39:48]: Yeah, absolutely. I do. I think that if I spent two weeks and didn't do any of the hard work, I think it would be just back where it is. And I think that that's kind of the point to drive home is that it's a consistent, consistent battle, just like misophonia is it's forever. I am just trying to figure out how to stay regulated and. That's a little bit daunting, don't get me wrong, but it's also empowering because it allows me the freedom of knowing that it's my choice. It's my choice if I want to continue to be that level of triggered. It's my choice. And I really, really, there's something to be said about those loop earplugs for me. It has just really changed things. But with or without them, I really have seen a difference in... um in my just my pace of life you know like i'm i'm able to just slow down and not i'm not constantly worried about what the next trigger is going to be that was my whole entire life was just preparation for what's next and what's going to hurt next and i i don't know i just i really i think that there's something beautiful about going inside instead of just slapping on band-aids like i had been doing for my whole life
Adeel [40:57]: Yeah, and part of it is interesting that you left maybe involuntarily from your job, and now it feels like you've kind of reflected on it, and it seems like a good move or a positive move. I sometimes wonder, not to sound like one of those people who's always criticizing modern life, but we're kind of like... kind of forced to put ourselves into little boxes and kind of conform to some you know role in society and whereas a long time ago I don't think there was as much of that like hundreds or thousands of years ago like you can I think you could kind of like be yourself and I feel like I don't know there's something about modern life that is kind of like Taking us away from our authentic self and you're kind of, I feel like, I know I just started talking to you a few minutes ago, but you're kind of like reconnecting with your authentic self. And that is a big part of the healing process, which I think Gabor Mate and other people like that talk about. Another fellow Canadian. I'm also Canadian, by the way.
Unknown Speaker [42:12]: I heard you say that on a recent episode. And so I wasn't going to give too much of the, oh, here's the Canadian perspective. But it is definitely a different system to navigate. I mean, they say it's a beautiful, beautiful blessing, don't get me wrong, to have free health care. But free health care doesn't necessarily mean good health care. So I found myself spending a lot of money on alternative therapies just because I haven't been able to get what I need from a general medicine standpoint.
Adeel [42:41]: Right, right. Actually, I'm curious, other than the hearing symptoms, are you being triggered visually or other senses at all? Since we have some other comorbidities, I'm curious how far this goes.
Unknown Speaker [43:00]: Yeah, it's it's funny because for most of my life, I really just didn't. I just truly gaslit myself out of thinking these are real symptoms. But I have really bad tactile issues. So certain materials, I do not like the way they feel. I don't like to touch certain materials. And texture wise, like I would consider myself to have ARFID, which is like avoidant. restrictive food intake disorder which is like i there's some textures that i it has nothing to do with the taste if there's a certain texture of a food i i will not cannot eat it um and then as well uh i do have mesokinesia it's i i hardly like talking about it because i feel like every time i talk about it makes it worse but uh there's just a couple things here and there where and mostly they're related to like the anxiety of waiting for a triggered noise it's like you know like putting the hand to the mouth stuff like that um but it's there's a lot of like um things that i learned after my diagnosis that i was like oh like my parents said as a baby i didn't eat pablum like there was many many things that any baby would normally eat like i didn't eat butter as a kid growing up because the texture just yeah so there was a lot pointing to me for me personally to autism but um Misophonia was definitely the building block to understanding that that's what was going on with my system.
Adeel [44:21]: And finally, getting closer now, I'm curious also about your parents. I'm curious kind of what their childhood was like. I start to ask now these days because being more cognizant of developments and things like epigenetics and understanding how things can be transferred intergenerationally. I'm just kind of curious if there's any kind of family history of anything unusual happening.
Unknown Speaker [44:53]: This is actually something I was just thinking about recently that is kind of profound, but I don't think that there's much of a history in my family that I knew of. But as I get older, I'm starting to, and I really don't want to... put a label on anyone who doesn't need to associate it with with it sorry but my father I know has some sort of neurodivergence I believe he has ADHD you know there's this the genetic tie I I think is so there but I can't personally put a finger on it but I it makes me think deep down like there must have been generations of women before me I'm sorry be it men be it women of um People in my family that have probably struggled with the same thing in silence. They probably didn't have the opportunity to understand it or to talk and speak out. And these are people that have been dead for hundreds of years, you know, but I truly believe in that genetic connection. And while I can't point it out in my direct genetic line, I can't help but think about the women that got me here, essentially.
Adeel [45:59]: Yeah. I mean, there's genetics of the condition to condition. There's also the idea of epigenetics where a trauma from a past generation sometimes shows up as a symptom to a child or even grandchild, which is kind of crazy to think about.
Unknown Speaker [46:17]: Yeah, so I think in terms of emotional availability, that was definitely something that my parents struggled with. They were wonderful parents, but And a lot of the times I would struggle to bring things up because I would get, you know, the, oh, suck it up, Nancy. That was a big thing my dad always said growing up. They were very like... if it's they were very not ruffle the feathers kind of people and I think that that stems from their bringing up their childhoods and the way that they were brought up as well as they my mom was adopted so she has her own trauma there but there's just a lot of emotional neglect in my family and I think that is a big reason why I ended up kind of on the route of the high masking thing was because we didn't express emotions in my family and because that was kind of the time I grew up in where you don't send your kid to therapy because they're having a small emotional regulation issue you know we we hid our issues we didn't talk about them and I think that really comes down to the way that my parents were raised which influenced of course the way they raised me.
Adeel [47:27]: Gotcha. So your childhood was wonderful, but it was potentially just kind of like sweeping things under, not necessarily that there were things, but there was kind of an environment of just brushing things off and not really shining a spotlight on anything.
Unknown Speaker [47:44]: Yeah, it was more about keeping the peace and having this image of like a perfect family. And I don't know that I don't think it was my parents intention to live like that. I think they just that's all they knew. And I am so, so lucky. A big part of my success is my family. And while the beginnings were traumatic, I think that where we are now is so beautiful. I just visited them for Christmas this year and. um i didn't to be honest i didn't notice it till the end but my mom brought up the fact that she didn't buy any chips you know like the whole weekend like she really um was careful with things they bought and then of course it became a lovely joke at the end of me leaving like oh yeah we can finally buy chips you know like they just it's important to have people in your lives that are gonna not just allow you to have misophonia and not be ashamed of it but that are actually willing to bend because there's a lot of people that are just like oh that's your problem but i'm i'm so honored to have a family that while they don't um know they try not to walk on eggshells around me as much as i'm sure they do but they just they get it and they're willing to just bend and do the littlest things to make my life so much easier and i'm just i'm eternally thankful for that because it influences how i see the world honestly and how i see people and how i see misophonia becoming such a manageable thing in the future
Adeel [49:10]: Yeah. You know, I think I just talked to Alex who was a couple episodes ago who I think she lived in Victoria. Maybe next time you're over there or something on Vancouver Island. This funny meetup. That's actually my dream place to live. Vancouver Island. So, but I digress. Well, yeah, I don't know. Carly, this has been amazing. And I wish you the best of luck with the coaching. Yeah, I'd love to, if you want to talk about that at any time after. I'd love to, because I put some thought into, you know, what coaching for at this level might look like. I don't have time to do it, but I'm happy to kind of like give advice or bounce ideas. But I don't know, anything else you want to share with folks about your experiences?
Unknown Speaker [50:03]: I guess I'll shout out my website. So I'm just in the beginning stages of development, but I do have a domain. So I'm calling it Women Unmasked. So womenunmasked.ca is my domain. And I really want to find a way to make, I don't know, I want to focus deeply on misophonia in my focuses because I can see myself, like a big part that I struggle with in daily life is you know, when you're watching television or when you're watching a yoga video or you try to pull off a meditation track and then you're halfway through the track and there's something in the track that's triggering you. And this is a big thing for me with watching yoga videos, like all the breathing and stuff. Like I want to start creating resources for people that are misophonia safe. And that seems so trivial, but it's not when you have misophonia. You know, I want to have like 10 minute meditation and then in brackets, misophonia safe. Like I want so deeply for people to be able to start trusting again because I can't even watch a television show and trust that I'm not going to get triggered. And I think if there was a way to say like, oh yeah, this is a great series and here's where the triggers are or something like that. Like I want to be able to tie in. not necessarily controlling misophonia, but working around it and working with it and to make your life a little bit more peaceful.
Adeel [51:27]: Yeah, no, that's great. Yeah, I mean, people have talked about kind of like a Yelp for misophonia or something. Yeah, exactly. Where you can kind of go and see what is not going to trigger or to be warned about some things that you know in advance.
Unknown Speaker [51:47]: Or just to be able to do a meditation track and not... be concerned that there's going to be halfway through to stop. I had this wonderful idea that anyone can feel free to coin this because it needs to happen. But with the invention of AI, I thought about the possibility of a pair of... ear plugs or like headphones that with time learn your sensitivities. You know, you hit a button when you don't like something and over time it starts to learn your sensitivities and eventually like filter in and out noises that do or don't work for you. So I just think that there's some beautiful opportunities for technology going forward that someone should definitely dig into.
Adeel [52:26]: Yeah, people are trying to do that. Thank goodness. That is in progress. Yeah, it's just going to be a matter of making sure it happens fast enough so that it's not like a five-second delay.
Unknown Speaker [52:40]: No, exactly, right? I think that from where I was as a teenager dealing with this and hardly even having a name for it to where we are now, I'm hopeful, and that feels good.
Adeel [52:52]: Well, let's leave it on a hopeful note, Carly. Yeah, thanks again for coming on. I'll have links to womenatmask.ca in the show notes. But yeah, this has been great. I know it's going to help a lot of people and your new business will help a lot of people. So yeah, good luck.
Unknown Speaker [53:09]: Yeah, if anyone wants to reach out, even connect, even ask a question, no matter how big or how small, please feel free.
Adeel [53:17]: Thanks again, Carly. It's awesome to see so many misophones who want to give back and help others heal. It's actually one of the very positive things I think that can come out of our experience. If you liked this episode, don't forget to leave a quick review or just hit the five stars for every listener of this podcast. You can hit me up by email at hellomissiphoneypodcast.com or go to the website, missiphoneypodcast.com. It's even easier just to send a message on Instagram, at Missiphoney Podcast, on Facebook, Missiphoney Podcast, and on X, it's the Missiphoney Show. Support the show by visiting the Patreon at patreon.com slash MrQuietPodcast. The music is always by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [54:24]: you