Ana - From discovery to advocacy, a transformative journey
Transcript
Adeel [0:03]: Podcast. This is Season 2, Episode 8. My name is Adeel Amar, and I have misophonia. Today, I'm talking with Ana. Ana is quite open about her miso, and is an active advocate through her blog and over social media. She's got a lot to say, and this was a really fun conversation. We get into her coping mechanisms, which, apart from the usual things like headphones, includes strengthening her mental resilience by trying to change her thought process during triggers. Breathing exercises, meditation, journaling, just living healthier, all as ways to improve the response and recovery time of her triggers. She lives in the United States now, but we also talk about the state of misophonia in her home country of Russia, which let's just say is suboptimal. I want to also announce a new project I've started this week. Basically, after talking to so many people here and hearing from listeners, I realized that I'd love to support the livelihoods of other misophones. I want to know about other misophone-owned companies. I want to know artists and creators that are selling products. I even want to know just where every misophone works, because if I can, I'd love to spend money at these businesses. And I know many of you would, too. So this idea actually started as a job board because I thought wouldn't it be great to find a place with other misophones if you're looking for a job, but I'm making it much broader. Any place we can financially support misophones, I want this to be the list. So you can check out the misolist at misolist.com, M-I-S-O-L-I-S-T dot com. There's probably just a few listings there at the moment, but you can hit the add button to add your company. If you're unsure, just send it anyway and I review everything. I'll let you know if I have questions. Remember, even if you just want to post a company you're working at, go for it. I'll regularly be promoting listings from the MISO list here on this podcast and over social media. It's an experiment, but I think it's another great way to build a community beyond Facebook groups and lists of treatment resources. And this will always be completely free, so you have nothing to lose. Just a community to help grow. Now, back to what we're really here for. Let's begin my conversation with Anna. Anna, welcome to the podcast. I've been wanting to have you on for a while. It's great to have you here.
Ana [2:30]: Oh, thank you for having me here. I'm so excited.
Adeel [2:33]: Yeah, so I met you, you know, briefly, I think probably at one of the conventions a couple of years ago. And yeah, was that your first convention that you'd gone to?
Ana [2:43]: Yes, yes. On May... Second, that year I discovered that Misophonia is actually a thing. And I spent the whole night, I think the next 24 hours were research of all the podcasts, websites, blogs, and you name it. And I read a lot, found a lot of information. I discovered that actually they have a convention. And I think it was in May and the convention was in October or November. I purchased the ticket right there. Yeah.
Adeel [3:20]: Yeah, I remember. I mean, we haven't really been in touch since then, but I clearly remember the story that you gave at the convention of how you found out you had misophonia and everyone was kind of still talking about it. Do you want to maybe start with that?
Ana [3:36]: Sure, sure. I had misophonia for all my life, but I didn't know that misophonia is actually a thing. until May 2nd. I remember the date because it was the day after my mom's birthday. And I was picking up my girlfriend's daughter from school. I was watching her for, I don't know, four or five years at that moment. Often became an auntie. And I was picking up her from school and driving her home. And usually I have a treat for her. And that day... I forgot and gave her the treat right away. And, um, before she got in the car. So as soon as she got in the car, she was excited. She thanked me for the treat. And then she started opening it and it was, I don't remember the gum or maybe a candy bar. I don't remember this time, but it's like five or 10 triggers at the same time. And it, you know, and we are in the car and I understand that it's triggering me and, this is where it strikes me, the question, why am I triggered by her? I mean, I always, for at least 10 years, I was in psychology, and I was under the impression that I have anger issues with people. And I was trying to figure it out, where it was coming from, and I could explain all the triggers, let's say, to my mom, I would say. But to her, she's a child, she's innocent, she's done nothing wrong. She never hurt me or never hurt my feelings. So why am I triggered exactly the same way and why am I thinking it? So, you know, those negative thoughts are running through my mind and then I'm stopping myself. Hold on, Anna, what's going on? It's not the same pattern. It's not the same person, but your experiences are the same. And then I asked her, like, can we maybe, can she eat with the mouth closed? And she smiled. She looked into my eyes and loving, in the most loving way, say, of course, Anna, I will. I know you have, like, I will do that. And then 30 seconds later, of course, she continues eating the way she eats. And then I'm turning on the music and then my question pop up. maybe she's just too young. So I wanted to Google at what age children are capable of eating with the mouth closed. And because I was driving, I pick up the iPhone and I asked Siri at what age children can eat with the mouth closed. We were at the red light. First thing that came up with this search was the YouTube video. So I clicked the play, I put the phone down and we continued driving. and that was the short version of the movie, Quiet Place. I still have goosebumps right now remembering on, we driving, people talking, I'm not even watching the video, but I finally hear that someone else has it, that it's not me crazy, that's actually a thing that people live, people struggle with that. And I think, and I mean, two minutes into that video, I didn't even notice, but I started crying. And I think I scared her a little bit because she asked me, Anna, why are you crying? And I turned to her and said, honey, everything is okay. Everything is okay. Now, of course, it's going to be fine moving forward because, you know, it's like, it's nothing wrong with me. It's nothing wrong with her. I don't have to do the research of what angry issues I have here. and we came home and i think that was the only night when i didn't bother her playing with me or talking with me i had her dinner and i let her watch the cartoons until her mom got back from work and i was just online researching videos blogs that's how i found so many sites and everything I could read about Misophonia. And when I walked out, I think I was bawling all night. And when my girlfriend came back, I mean, on her face, she was like, what's wrong? I will tell you all tomorrow, but everything is good. I just gotta go. I couldn't wait until I get home. And that night I didn't fall asleep. I was reading, watching. I think I purchased that movie Quiet Please right away on Amazon. And I found, because I'm originally from Russia, I wanted to share with my family what I found. And they don't speak English. So I started searching the YouTube with the Russian speakers to see if anyone speaks on this subject. I found very little information about that. And I sent that video to my family members. And yeah, that's how I find out about Misophonia.
Adeel [8:52]: Yeah, amazing. You're doing a search. You found a by Siri and then it's playing while you're driving. You can't touch, you know, you're driving, so you can't like fiddle with your phone. It's just playing in the background. And yeah, it's got to be just an amazing moment. Well, I mean, yeah, kind of a, obviously a rush of emotions. Yeah. And Quiet Please had similar effect, not while driving, but I mean, I couldn't, I couldn't sit through it in one sitting. It was just too emotional. I had to like take breaks. Um, so yeah, totally understand. Great, great film. Um, and so, yeah, you referenced your, your family a couple of times. Um, do you want to maybe talk about what it was like growing up in Russia and having a condition you didn't, you don't know what it was probably, um,
Ana [9:35]: obviously and uh how did you how did you deal with it maybe when did it start well i think um i don't know when it started i don't have much memory only like certain moments maybe before the age of seven i mean i remember certain moments when i was six or five but i do not remember my life baby life but i definitely remember that at age seven because that's when i started school the first grade and at that moment i was already i had trigger and i knew that i had triggered to my mom my mother is an open mouth chore and so at that time i already been triggered so it started before but at seven i knew i remember that and then school We had, what is it, like a cafeteria where all kids were eating lunch at the same time. And that was also memorable because I remember walking in and it's, I don't know, hundreds of students, kids, first grade, second grade, third grade, all together at the same time. So their forks, their spoons, their loud noises and all kind of different chores, screamers, all at the same time. And this is when I learned that if I eat fast, I can be excused.
Adeel [11:03]: Get the heck out of there. Right away.
Ana [11:04]: Yeah, yeah. And that was my tactic.
Adeel [11:06]: Yeah, yeah.
Ana [11:08]: Classic. Because, yeah, and I mean, it's also... probably not that misophonia was unknown not that no one could explain or understand it my whole family is we don't talk about subjects that are uncomfortable period period so it's just not an option to discuss and I understand my parents I understand it was a survival time everyone was busy with working and concerning with having enough food for the day and how to pay bills for this month and it was I it was never and I don't remember I don't even recall that you know quiet simple conversations heart to heart no it was automatic wake up in the morning go to school go to work make it through the school go back make dinner, do the homework, go to bed. And it was constant tension. So it was never, in my family, it was never an option to feel comfortable to discuss something. So even if I would say no one knew about misophonia, I would say if the family structure and the family, the way we live would be different, maybe I would be... bringing up this subject or talking about that. But it never was the thing. And when I grew up, I think as a teenager, when I started making the comments about my triggers, it was not welcome, let's say. And my family members are not supportive. They do not understand it. to the full or even half capacity of what that is. And so I remember college years or high school, I was made fun of. Oh, that thing you can't stand when we're eating or... By your family. Yeah, yeah. So even now, I live across the ocean from them, but it's still an uncomfortable subject. Even now, after I discovered that it was a phonia.
Adeel [13:37]: And you show them kind of, obviously, articles.
Ana [13:41]: I sent the videos, and it was totally ignored. No one responded. And at that time, I could not handle that properly, so I just let it be. So we all cried about that. And then now I'm...
Adeel [13:55]: have a blog and they write about that and still we do not discuss this topic wow yeah to this day i mean yeah so let's yeah maybe for now uh maybe we can revisit some of that stuff let's yeah let's fast forward to um you know your your advocacy you have you know you you have your blog i'm curious uh yeah you're you're you know i think one of the most uh active people talking about misophonia openly, blog, social media. Do you want to talk a little bit about how that, the blog, was it the blog that started? Was it for this kind of cathartic purpose of just needing to express it and maybe helping some other folks?
Ana [14:33]: Yeah, you know, I, when I, when I, the night when I find out about misophonia, I also find out about the closed groups on Facebook. And I was shocked to find out, I think the very first Facebook closed group that I joined had like 18,000 members. And I found there was international group in UK and there are a few others. So I joined them and I started reading what people post and it was very comforting and really, really, I felt the relief in the first two days. but the third day i realized that there's something missing and i understand the whole purpose of these groups is for people to be heard so they can vent and not to be judged because only those who have misophonia can fully support and understand but on another hand there was i didn't find much of encouragement on how to, let's say, not necessarily fix the problem, but at least how to heal yourself so it feels a little bit better. I understand there's no cure for misophonia, but there's so much we can do to live our lives fully to the best we can and make it easier on us and on those who are around us. And I didn't find it in the groups. So I had an idea to share on how you can actually live the misophonia life and it doesn't have to equal the miserable life. And everything that I've been doing and studying and learning in the last 10 years for the personal growth and my anger issues, as I thought, because I was self-diagnosing myself. Everything applied and actually worked and helped with my Mezzofonia journey. And I wanted to write about that, but I was too scared. English is my second language. I am not a blogger. I don't know how. I am not good at that. So all these fears were going through my head. But I have a very good friend who's a code life and business coach and influencer. And she encouraged me. And I've been thinking about it ever since May. till the day I was on the plane for the Misophonia Convention. And on the plane, while I was sitting at the airport, I had an idea on how I can write about my experience because airport is not the safest place for a person. And I wrote a very short message and I took a picture of the airport and the quiet place that I found for myself. away from people and I posted and she encouraged me. So she was the only one who was encouraging me to the point that I can actually overcome that fear and make a step and actually talk about that. and it's been two years and i had ups and downs uh misophonia and life related ups and downs and but my whole goal for this page was to freely express myself and um now i do write in both languages russian and english because not much information i found in in the russian community and my whole idea is to show that even though we cannot fix it even though we cannot um it's not curable we can do so much to be happy and we can do so much and misophonia to me is not my i'm not cursed i am blessed because misophonia led me to work on myself harder to to be more compassionate to myself and to other people, I discovered through Misophonia that I was so harsh on myself and this is what I see with so many people who live with Misophonia and I do want to show and be an example that it doesn't have to be this way.
Adeel [18:57]: Yeah, I love that angle, that positive coaching. And I think you're absolutely right. A lot of those closed groups are great for people who are new for the first couple of days, just realizing there is a community. But I think most people end up stepping back a little bit because it can be kind of overwhelming and negative, but cathartic for those new people. And this positive coaching, yeah, you're right. It's kind of a miss, there isn't like a constant voice like you. And your content's great. I mean, I'm going to have links in the show notes. Yeah, that's great. Do you want to maybe talk about, I think it's now gone into social media. I follow you on Instagram, which I'll also link to in the show notes. Is that kind of like an extension? Are you trying to kind of show more of your life? How does that fit into your advocacy?
Ana [19:47]: yes i um i have a instagram page and it's linked to the facebook because some people prefer facebook over instagram and the same content there and i have a blog um misophonia.blog where i post um larger articles i would say when i have i try to do it weekly but um not consistent yet my goal is to be consistent with my life experiences i really want to show what i do on a daily life that helps me have at least triggers under control my thinking under control to my best ability so that i once i have a trigger and anxiety or panic attack or flight or fight effect that it doesn't it doesn't take me a week to recover from that anymore. I have so many tools and practice and exercises that I do that help me to minimize it. My goal is to be over with that within 10 minutes. So I see the trigger or I hear the trigger and whatever happens, happens. And my goal is to get to the point where in 10 minutes I'm okay. And my goal is to have the trigger is like a flying, I don't know, bee near me. So, you know, it's annoying, but I can handle it. That would be my goal. And far from that, but I am so much closer than I was before.
Adeel [21:29]: Great. And it sounds like these are kind of mental tools, right? As opposed to maybe just kind of, you know, throwing on headphones. It's kind of like a thought process, you know, trying to change your thought process. Do you want to talk about some of that? Because, you know, people usually talk about, you know, the headphones and whatever. But I think it's really important to think about the mental resilience.
Ana [21:52]: Oh, absolutely. I've done a lot of work on, it's actually called The Work, and this is based on analyzing and tracking the thought process and how bizarre our thoughts can be, and we don't even know that. and how it's negatively affect us it's not about being right or wrong i'm not saying that the trigger whoever does the trigger is wrong uh who's right and i'm thinking negatively i'm wrong no but how to take control of your thoughts is a technique it's a skill that anyone can improve anyone can learn how to do that it takes time and dedication but it's possible and um I also practice I also noticed that I used to be a smoker I smoked for many years in my life cigarettes and I was okay with you know alcohol consumption occasionally but I've noticed how much negatively it affects me because the next day even if it's just one or two glasses of wine, next day, two or sometimes three, takes me to fully recover and get to the point where I'm capable of handling any triggers and doing those exercises on my mind and have results. So that's a big, big part of my message on my media is the healthy lifestyle. will definitely make a huge difference. It's not going to cure your misophonia, but it will help you become stronger mentally, emotionally, and physically. That's what my focus is on, to bring awareness on how much the difference it makes in misophonia when you are strong, when you can take your thoughts under control, your body under control, your emotions under control, and it's possible. We just never thought. thought we never thought that no one teaches us how to do that at home or school and it's hard and sometimes people just the hardest step is people don't believe that they can they don't know how and they don't think that's possible for them oh it's great that you can run and it helps you but i'm not around well i've never been a runner i smoked for 30 years and it takes me two years to make it two mile run without stopping but yeah i this is where i start my physical activities is when i i started with my mental exercises on how to track my and analyze the process of my thinking and one of the things that is most important that i discovered i cannot do it alone unfortunately for 10 years it's great that i was reading the books going to seminars and learning as much as I can from YouTube. But to actual practices, you cannot do it alone. You need someone to help you understand who is not emotionally attached to a certain trigger or the person who can help you understand that there is not only one way to think and there is a healthy way to think about any specific situation.
Adeel [25:19]: Got it. So you're doing mental exercise like outside of a trigger. It's kind of like a regular practice where you take some time and you kind of really think about overcoming this.
Ana [25:32]: Yeah, I do work on my emotions and then I dig deeper with the help of, you know, the person who I choose to. No, I actually, I will maybe send you the information about the work. It's created by Byron Katie and I found it it was totally irrelevant I found it way before the misophonia and I was just very emotional with personal relationship with not understanding of you know certain things and why I react towards let's say my mom or my my spouse, my former spouse, you know, and I was looking for a better way than therapy. For some reason, I was very resistant to therapy at that time. And I found the work and it's amazing work. It's only four questions, but it helps you understand any thought process that goes through your mind, maybe not right away, but it does help you understand and break it out on a small basis and see why you think this way and what the purpose, why, what actually, because there's always a reason why we continue to think the same way.
Adeel [26:49]: Got it. Okay. Yeah.
Ana [26:51]: There's always a pleasure. Yeah. It's called The Work by Byron Katie and it's amazing. one thing that i can encourage you cannot do it alone but there's a helpline of those who can uh who's learning to become a practitioner and they do it for free so when i wasn't able to afford the session i would call the helpline and i would have someone working with me for free but then when i was able to afford i have good recommendations of people who were locally in Phoenix, Arizona and across the country and now in a different continent. And they help me with that. So it's one of the tools. I'm not saying it's only one, but it's one of the tools that planted the seed that actually there is something can be done with my thought process and that I can actually take charge of my thinking.
Adeel [27:43]: Yeah, we'll definitely have a link to that in the notes. And yeah, maybe some of these other tools, are there any top of mind that you want to share, that you recommend?
Ana [27:57]: Well, I started with the headphones when I found out about Misophonia.
Adeel [28:01]: Yeah, classic.
Ana [28:02]: Yeah, I started with the headphones and it does serve the purpose. You know, when I was working at... as a financial advisor for over 10 years in an open office environment, it was a torture. And headphones were my lifesavers because there are so many noises around and it just allowed the environment in the office when it's open office and you have hundreds of people on the floor working together. So headphones helped. But my goal was to become stronger so that I don't have to, you know. I was practicing is educating others because people just don't know. People just don't know what triggers. Even my close friends who know that I have a blog, they don't know what triggers. They only think that the gum and maybe the, um, nails while they're texting on the phone is two, uh, the only two because that's what I've talked about. But there are so many more and we don't know about others. So they, um, talking about that helps. And, um, Walking outside and doing breathing exercises is also a lifesaver. The work that I do on my thinking is outside of the trigger moments. That's what I do to prepare that when the trigger moment happens, that I'm prepared, I'm stronger, I understand, and I can guide myself on that moment to make it. make less miserable you know but during the moment when i'm triggered walking away and uh doing the breathing exercise that's what helps um a lot a lot i do journaling a lot especially on the moments when i'm triggered because it helps to release the information I'm not joking. When I'm home, I'm burning it. When I'm done, I'm writing it on a piece of paper, everything that I'm thinking and just releasing it and burning it. If I'm in a safe place, if I'm at work, which I practiced a lot, I would take a break and I would walk out and I would take a piece of paper and a pen and I would write everything that I'm thinking. And, you know, it helps. because just thinking about that and not sharing it's not healthy and we are not safe to share because what we're thinking at the moment of the trigger It can scare us, too, because the thoughts can be very, very negative. There's so much rage, so much anger, and there's so much negativity that it sometimes scares me. Like, how can I think that? Or how can I think about that person that, you know? So writing it down and, you know... turn it apart, turn away, burn it, do whatever you want with that.
Adeel [30:58]: Right, yeah, you don't have to keep it, you don't have to keep the evidence.
Ana [31:03]: Yeah, the only ever time I went back to keep the evidence is when I was actually doing the exercise for myself with I wanted to do the research on progress, you know, okay, this is what I was thinking during this trigger a month ago and then Two weeks later, when I have this trigger, I do another journaling exercise and I keep it. And I've done it like every two weeks to see the difference. And I was able to track some difference in each.
Adeel [31:37]: Oh, and have you noticed a difference? And has that maintained itself or has it kind of regressed?
Ana [31:42]: I've noticed a big difference. I mean, it's big to me because if I'm going from level 10 to level 8 in two months, for me, it's a big difference.
Adeel [31:54]: Oh, that's huge.
Ana [31:54]: It's a huge difference.
Adeel [31:55]: Congratulations. Yeah, that is great.
Ana [31:59]: And don't take me wrong. it looks like that's what needs to be done to every single trigger because some others you know I mean just for one that trigger for maybe even one specific person but if I do that I was able to track it and I was able to see the difference yeah
Adeel [32:19]: Well, at least there's hope. It gives you some hope. And yeah, journaling is interesting. I haven't heard that come up much. Breathing exercises has come up recently in a couple of conversations. Is there anything particular, special that you do? Or is it just kind of like taking deep breaths and closing your eyes?
Ana [32:39]: Definitely deep breaths. But all the breathing exercises that I ever started with were from meditations. Meditation is a big, big part of it. I'm still one of those who struggle with meditation because it's just, it seems like an impossible task for me. I can see, just like with the research of my own thoughts, I can see the difference. If I was at the level 10 with meditation and being able to sit still for five minutes, I may be nine now. But yes, it's a short progress for a long time, but it's a progress. I'm better now than I was a year ago, two years ago. And it works magic. And when I started learning about meditation, because I knew nothing about meditation, this is where I, I started on YouTube, seriously, just the YouTube and free videos, everything that I can grasp on. And that's when I learned that, you know, you can do the meditation with specific breathing, or you can breathe normally. And this is when I'm like, oh, look at that, it's different breathing. So then I started searching for different breathing exercises. And I just found random exercises that I tried. I literally just randomly tried. It was very self-diagnosed. You know, misophonia is self-diagnosed and the treatments are self-diagnosed. But it didn't stop me because I need to find something that works for me. I want to find something. And maybe something that works for me doesn't work for others. and I've heard once I start looking for different breathing exercises I start talking to people who do that for other reasons like you know because it's just good for you and good for your health mental and physical health and some of the exercises that people encourage me to try done nothing for me you know and didn't work but I remember how years ago I went to Anthony Robinson convention for my personal growth and it's totally irrelevant to Mr. Ponia but he had the breathing exercises with us with 14,000 people and I remember how amazing I felt after that so impact of breathing exercise is huge and this is when I put two and two together so when I feel better when I think better When I'm stronger, I handle my misophonia better. This is when it's clicked for me. So I'm like, okay, I'm going to do it all. I'm going to do it all. I'm going to do it every day. This way my misophonia life will not be miserable and I can live a life to the fullest.
Adeel [35:42]: Yeah, a lot of these things reduce stress, which we all know is like a huge multiplier for misophonia. Yeah. Yeah. So that's great. How was it in being in a Tony Robbins seminar with 14,000 people?
Ana [35:54]: Oh my God. You know, first, first of all, it was, um, before I actually have a post coming up on that.
Adeel [36:02]: Okay.
Ana [36:03]: Yes. I, uh, I wanted to share it for so long. I just, you know, um, it was, it was amazing, you know, because once you, once again, yes, it's loud. Yes. There can be, uh, I'll be honest, yes, I could change the seat a hundred times a day just because there may be a pen clicker next to me, gum chewer next to me, and maybe speakers that are too close that they use for any music and sounds. Yes, but my whole purpose was so much larger than the triggers around me. My whole goal when I go to the seminars is find a comfortable place for myself and just focus and be present as soon as i have a trigger see if you can move uh that was my tactic at that time and i did move even though there were assigned seats i could always stand in the hallway i can maybe you know take a bathroom break and come back and you know I mean, I do want to believe that you can only click your pen for so long.
Adeel [37:12]: We all want to believe that. Yep.
Ana [37:15]: So, and I try, you know, find a way. So I just, you know, at that time when I was that very, my whole tactic and strategy was to, you know, move when you have to and grab as much information as you can. And it was amazing experience.
Adeel [37:33]: Yeah, that's great. Maybe, yeah, switching gears a little bit, I'm curious, you know, you said you were interested in getting your content translated into Russian and how, you know, in Russia, nobody talks about anything, probably this stuff, maybe nothing mental health related. Have you noticed, are you reaching people in Russia? Have you heard from anybody who has misophonia over there?
Ana [38:01]: no not no one reached out yet but i have russian followers so and i'm assuming that um you know it takes time i just started writing i would say maybe in march in both languages so it's only been a few months um and i was hesitant to do that i'm not saying russian followers uh mean but when you discuss mental health and when your um message is uh you have to you know when i encourage my followers to take responsibility for themselves for their life for the emotions for responses for everything that's why it's maybe not that popular if i would be posting something how bad people are triggering all of us you know so the message i'm going against the masses so i was hesitant at first because um it's a sensitive top topic you know and people don't feel comfortable to discuss it. And don't always accepting that, you know, yes, yes, it's my responsibility. I don't take myself seriously. I don't take care of my body or my emotions, my exercises. Yes, that's why I'm overreacting. I was afraid of this because, you know, I understand more than anyone what it feels like when you have misophonia and no one supports you. I understand. But I also understand that no one's coming to save you. You're the one who can save yourself.
Adeel [39:38]: Yeah. So you've developed that, um, yeah, growing up, you've had to do that. I mean, yeah. Yeah.
Ana [39:46]: So I don't have a followers who reached out to me in Russian yet, but I have, uh, people who reached out to me and they had, um, some coaching sessions with, um, I had clients in Australia. I had clients in the United States. And, um, when I say clients, I, I, I, I mean, people not necessarily who have misophonia. I had moms, there were two experiences when moms, one child was five years old and another child was 11. And at that age, they knew that the children have misophonia, but children cannot explain well yet. They don't even understand themselves the misophonia experience, so they can't explain in the full capacity what it's like. So I had moms reaching out because and thank me because they're like, my child cannot explain. I understand something that is wrong with noises, but I don't understand what noise, what it feels like, what to do, what not to do, what helps, what doesn't. And me talking to her like adult to adult, I mean, I was happy that I could bring some sunlight to that problem so that she can address it and make the life of her child easier because at five you can't develop you can't demand from a child to exercise and practice the breathing exercise or you know physical exercise or you know thinking process no it's a child brain is not fully developed and body is not fully developed and it takes time but mom can take care of the environment until the child is grown enough to start you know doing something on her own. So that was great.
Adeel [41:38]: Yeah, there's a lot of parents who are kind of reach out desperately trying to figure out what's going on. You know, you hear about all the usual illnesses that children can get and you try to protect them from that. I'm sure this comes out of nowhere and just shocks parents. Like, what is this? And how about like, you know, your kind of inner circle, like your friends and relationships? How's, you know, how's misophonia kind of affected that, your social life?
Ana [42:09]: Well, I would say it's definitely affecting my life, but I'm an introvert, so I like to, you know, spend some time recharging away from people. I didn't know it has... It has nothing to do with misophonia. I think it's my personality, but I'm not... I really enjoy the interaction with friends and others. So this misophonia forced me to discover, to face and to acknowledge the fact that I had to work on my self-esteem because I was not comfortable to discuss misophonia with people. and I was hiding and walking away was the only technique I used prior and now I see that I put so much effort into figuring out why I wasn't comfortable and I practice now to discuss it no matter what and stand up for myself and not always put myself last and My technique is that I will do whatever I can on a daily basis to make sure that my responses are comfortable for both of us, to the best ability I can. But while I'm working on that, I don't tolerate disrespect from others. So no one chooses to come or eat food in my car anymore. That's it. I have a sticker on my car. And it's my property. If you are riding with me in my car, I would respectfully ask you to respect me and my condition and not to chew or eat food in my car. Same thing with my house. If you enter in my home, I would ask you to do your best to avoid the triggers.
Adeel [44:30]: These are some ground rules.
Ana [44:31]: Yeah.
Adeel [44:32]: Is this mainly for friends that know you or is it like anyone that comes in?
Ana [44:39]: Anyone. Slowly I'm going to anyone. And I understand that sometimes I have friends who are first time in my home. Never knew and don't even know. They know that there's a thing that maybe bothers me, right? But they have no clue what that is. And when the person is first time in the house, in my home, I do my best to spend at least 10 minutes explaining things and to make sure that they don't take it personally, that this is how it is here. And I will not apply the same tactic if I'm in my girlfriend's house. So when I'm in my girlfriend's house... And her daughter is still an open mouth to her, you know?
Adeel [45:27]: Yeah, right.
Ana [45:29]: I do not force her to stop, let's say. And I don't demand that. I'm in her house. That's her rules. And that's her choice on how they're going to handle that. But I no longer sit there through my triggers. I allow myself to walk away. Oh, excuse me, if I cannot handle that. If I can, I will. So basically, I got to the point where I learned that I have to learn to put myself first, my comfort as well, but be respectful to others and ask them to meet me halfway.
Adeel [46:13]: Yeah, that's great that you're consciously looking for that balance of how to do that. That's important. So you take a few minutes to kind of explain to somebody who's coming into your house that, yeah. What are some of the things you say? How do you frame it? Do you frame it as like, don't do this, don't do that? I doubt you do that. Or is it more, I have problems processing certain sounds. I guess people are always kind of curious. What are some talking points that I can use?
Ana [46:58]: I like to use the analogy, and it helps me. Maybe not the best, but it helps me. So first I ask people if they've heard of misophonia. And I use the explanation as it's a very sensitive reaction to certain sounds. And I use the analogy of allergy to peanut butter. So everyone knows about peanut butter, everyone knows about allergy, and people are usually respectful to that. So if my girlfriend's child has allergy to peanut butter, and she told me about that, I will do my best to never forget it, to never offer her that, and to acknowledge that and not make fun of it, not bully her for that. But I use it as a respect and loving way to make sure that I will never put her in a position of being around peanut butter or secretly hide it into any of my recipes. You know?
Adeel [48:10]: Yeah, that's interesting.
Ana [48:11]: And it's not the same, but people understand it.
Adeel [48:16]: Yeah.
Ana [48:17]: And that helped me. Yeah. Same thing I would say, like, let's say, you know, any disability. If you have any kind of disability, you would want me to make sure that I'm creating a comfortable environment around you just for the time we're together. So I use that as well.
Adeel [48:42]: That's great. How about at work? You're probably working from home now under this lockdown condition. First of all, is this better or worse? I don't know what your neighbor's situation is like. How was your work situation like when you were in an office? When I was in the office, I would say for...
Ana [49:11]: 10 years of me working in an open office environment, it was very challenging, often miserable, often, very often. But then when I discovered about Misophonia and I started talking about that, I had pretty much people divided on three groups. One supports, cool, no problem, we got it, not a big deal. We'll do whatever we can. not to trigger you of course this group will forget but they will say i'm sorry when they remember so after me you found out what was funny was you told people at work yeah yeah yeah i did i did it wasn't easy i started with those who i was comfortable with but then it spread out um then was another group that um just doesn't get it just doesn't cannot understand and uncomfortable to discuss details so and it's hard it was hard to see that that group actually included my um leadership so um and the third group that i don't understand i really don't understand there's a there's a group of people that know what misophonia is um uh would uh look into my eyes and say like into my face say oh my god i wish i can do something to help you yet they trigger me and they don't understand that it's actually a trigger i gotcha okay yeah i was frustrated yeah i was shocked by one uh one girl and the most shocking for me was that her sister has misappointed And she was the person who would bring the lunch into her glass container and would use the real spoon and obnoxiously enjoy her lunch every day. And, you know, I just couldn't understand. But I was not brave enough to face that conversation, you know, the second or third or fourth time.
Adeel [51:33]: So has it gotten better at all? Despite having these three groups, only one of them seems a promising development.
Ana [51:42]: Yeah, I would say the entire 2019, I focused on finding a different job. I was willing to take a risky step of leaving the comfort of corporate America and working from home. I really wanted it. It was a dream of mine. I really wanted to do that. It was not easy because when you have 10 years of experience working in one field going somewhere else, it's not that easy. I understand people who struggle. I do. But I was able to find a job and I started working from home and it was 100% remote. And I did work for them for the whole three weeks before the quarantine happened.
Adeel [52:26]: Oh, gotcha. Okay.
Ana [52:28]: Okay. So whole 2019, I was looking for a job. I found a job in the beginning of 2020. I left my corporate America and secure job in office. And I started working at this agency and I was the first one to let go during the quarantine.
Adeel [52:42]: Oh, that's too bad.
Ana [52:44]: So it's too bad, but I would say it did give me the, um, enough faith that it's possible because, um, I'd rather take a risk and keep looking, but I'm going to stand for myself and I'm not going to put myself into the environment where that is not helpful.
Adeel [53:10]: Yeah, that's a great attitude. Yeah, it's a positive attitude.
Ana [53:14]: I do believe, that's why I encourage on my Instagram, I encourage especially young people, especially teenagers at that time. Nowadays, whatever the skill you have, you can convert it into profit. Do whatever you can to find and develop those skills early enough so that you don't have to apply for the job just to get the paycheck. and be surrounded by triggers. Because in reality, you can have, you can do so much to make your life and environment comfortable for yourself.
Adeel [53:50]: I cannot agree more. I'd actually do kind of, I'm in tech, so I'm a coder, but I do talks every once in a while about having, you know, side projects, multiple side projects going on. They don't have to make a lot of money, but at least it's a cushion for you. You can code something, you can be a virtual assistant, whatever, But you can have a bunch of things on the side where you're not going into these interviews desperate, begging to have a job. And if poop hits the fan, you're not completely lacking any income and you're a little bit more diversified. Absolutely.
Ana [54:28]: I mean, everyone can learn. For example, even to be a photographer.
Adeel [54:34]: Yeah, and you're kind of a YouTube expert, so you can go on YouTube and learn any new skill, pretty much.
Ana [54:39]: Yes, you can do that. And that's what I, during the lockdown in the last three months, I took the online courses for photo editing and writing because I no longer want to use my excuse that English is my second language and I'm not a good writer. I do want to bring the message out. And I use this time to improve my skills on... photo editing for my blog and Instagram and for writing. And I'm going to continue because this is something that I can work on. I can improve and which can lead to side hustle, full-time, part-time. It doesn't matter because, I mean, just imagine if you don't know, like if you're a teenager right now, it doesn't matter what age. If you don't know what to do, but you can accept the fact that you can learn to take a picture, you can become a photographer because you can build your own schedule and you don't have to sit in the office next to someone who does the pen clicking or eat with the mouth open or the loud breather. You on your own, you make your own schedule, you create your own life. And photography is just an example.
Adeel [56:01]: Yeah, it's just one example. And taking pictures is just one part of photography. It's not even the whole thing. And whatever is valuable to you and your project, I guarantee it's a skill that people will pay you to do for them. Yeah, absolutely. it's a great attitude um yeah i kind of i mean this is this is one of many positive notes we could we could end on but um uh yeah i want to give you another chance if is there you know is there anything else you want to you want to tell folks um who yeah anybody i mean who's new to misophonia or is or is struggling with misophonia and had it for a year as had it for years um you know anything else you kind of want to want to talk about
Ana [56:43]: Absolutely. I would say you cannot do it alone. You cannot do it alone. It's hard. And you always need someone who can hold your hand and maybe listen when you just need to talk and maybe encourage when you are not sure. Because faith and support and the feeling of belonging have done miracles to me. and that's why I really want to create the Nusafonia tribe of those who want to support each other and learn that they are capable of creating their lives and it doesn't matter how old are you, it doesn't matter where you live you can always improve your skills and you can always improve your life and sometimes all we need is someone to believe in us and sometimes all we need is to hear from others that it's possible because in my misophonia journey when i find out that it's a thing it was a relief but then i've heard there is no cure And there was this fear. What do I do now? I'm scared. How am I going to live? If there is no pill for that that helps me, what am I going to do? Will I ever get married? Will I ever have children? Will I ever have a job? How am I going to go to the restaurant? How am I going to go to the movie theater? All this is running through my mind. And all I wanted at that time was someone to hold my hand and say, it's going to be okay. We'll figure it out.
Adeel [58:20]: Amazing. Well, coming in on the Misophonia tribe, that sounds like a great idea. And yeah, for any Misophones out there, I mean, I would love to, the kind of last few minutes inspired me. I'd love to kind of like help coach Misophones on how to acquire skills, at least, you know, skills I can teach people on that kind of help them do these art projects, just be independent and stay at home. I think that'd be great to start a little group that does that.
Ana [58:49]: absolutely and i always ask my followers tell me what do you want to hear the most because um i have like information of practices and exercises and things i've been doing for 10 years and i often don't know where to start because you know um we all we all have you know fears we all have insecurities and and sometimes unsure and i noticed that i'm not a professional blogger yet to know my to to know i just know what works for me and but i don't know sometimes if it's uh you know welcomed or if it's needed information so i always ask my uh followers what do you want to know the most What can I help you with? Because there's so much. I cannot put everything in 45 minutes and explain to you that everything that I do that helps me. But, you know, if you have a certain questions, it's so much easier to create a tool and help you create a post and share the tool with you.
Adeel [60:00]: Yeah, you don't have to be a professional blogger, especially for a condition like this where there's no cure.
Ana [60:05]: Well, I had this file in my mind. I had this file in my
Adeel [60:11]: Well, that's a good thing to aspire to. But yeah, I think people are looking just for day-to-day, being able to relate to somebody and get day-to-day tips. And I think what you're creating is great. I'll have links in the show notes, but do you want to just quickly mention the URLs and the Instagram accounts?
Ana [60:29]: Sure. Instagram is misophonia.blog. Facebook as well, misophonia.blog. And to make it all easy, my blog is www.misophonia.blog.
Adeel [60:45]: Amazing. Well, thanks again, Ana. This has been a very rich, very amazing conversation. And thank you for everything you've done to help the community. And I hope to see you again at one of these conventions when we can actually all meet up in person.
Ana [61:02]: Absolutely. I look forward to that too. And thank you so much for inviting me to your podcast. I would love to help anyhow I can because there is so much can be done by us to help our community.
Adeel [61:18]: Thanks again, Ana. Really interesting talking about the thought processes behind MISO and learning about the reaction in Russia. I hope things improve for misophones over there. Don't forget to check her links in the show notes. We're at Misophonia Podcast on Facebook and Instagram and at Misophonia Show on Twitter. Remember to check out the miso list, misolist.com and submit your company. Music as always is by Moby. And until next week, wishing you peace and quiet.
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