Heather (That Girl With 4S) and Michael - Advocacy and Recovery from Misophonia
Transcript
Adeel [0:00]: Welcome to the Misophonia podcast. You're listening to episode 20 of season 2. My name is Adeel Ahmad and I have Misophonia. Hey, so I'm really excited to bring you this episode with Heather, maybe better known to some of you as Chew With Your Mouth Closed, her social media account. She's also quite active in forums, online, helping people make sense of their miso and the miso of their family members. She's been doing this for years. Heather came on and actually brought her boss, Michael. So we get to talk all about their experiences, obviously, what it's like to have multiple misophones at work. Heather talks about her insights from having talked to so many families about miso over the years. And Michael, who's actually sort of the opposite, having been very private about his misophonia due to years of bad experiences from speaking up. So we get to hear that perspective too. They both work at an addiction treatment recovery center. So for the miso list shout out this week, I want to highlight that company, Omega Recovery, in downtown Austin, Texas, doing great work. For other businesses owned or operated by misophones, check out the miso list, M-I-S-O-L-I-S-T dot com and add yours. My calendar has now opened up for season three interviews. So far, the only time slots I've made available are very late at night, Central Time USA. And this is just because of my schedule these days. But I'm hoping to open up some daytime slots eventually. Just go to misophoniapodcast.com and click the Be A Guest link to go to the calendar and book a slot right there. Of course, the link will be in the show notes too. All right, now let's get to my awesome conversation with Heather and Michael. Heather and Michael, welcome to the podcast. It's great to do a little trio interview here. Thank you for having us. I appreciate it.
That [1:59]: Yeah, thank you so much. Glad to be here.
Adeel [2:02]: Cool. Yeah. So obviously, you know, in this unusual situation, we got more than one person. Maybe Heather was the original person who reached out to get on the podcast. And yeah, I'm excited to have her because you're an advocate. You've had a history of social media accounts talking to me. So do you want to introduce yourself a little bit first before we get to Michael? Sure. Yeah. My name's Heather Smith. I started an Instagram account called Two With Your Mouth Closed a couple of years ago. And I, in the past, have worked with families and their kids that are going through the trials and tribulations of having the loved one with misophonia. And I still try to help out. and involved in a lot of Facebook groups. I've worked with, uh, Marcia Johnson. I've worked with, um, Jeffrey Gould actually. I've talked with him before and, um, yeah, I've had misophonia for 30 years. So. Gotcha. Okay. And you, um, and so, yeah, Michael, so let's, yeah, maybe let's just talk about how you're connected to Michael. Michael Smeltzer is my boss and one of the best guys I've ever worked for. And I believe that I've been working with him for about six months. And he asked me to write a bio for our website. We both work for Omega Recovery and the recovery industry. And he asked me to write a bio about myself and dealing with addiction and my own mental health struggles. In that bio, I wrote that I suffered from misophonia and how much of an impact it had on my life. And he emailed me, I have it too. And it was just like one of those awesome moments where you connect with someone who has misophonia and they understand. And so, yeah, I love talking with him about it. We'll call each other and complain. about a coffee slurper or a gum smacker. Michael will fire them. Yeah. He's just a great guy. So Michael, do you agree that you're a great guy and one of the best people that she's ever worked with?
That [4:27]: Oh, without a doubt. I think she hit the nail on the head and Heather's not too bad herself.
Adeel [4:33]: Cool. Well, great. Yeah. Okay. This is a great background. So yeah, I don't know. Let's start with you, Heather. A couple of years ago, you started the Instagram site, but obviously, you've known you've had this for a while. Let's just go all the way back like 30 years ago. What was going on around then? Yeah, I was seven years old. And of course, Misophonia... is known to have an onset age between six years old and the onset of puberty. But for me, it was seven years old. My mom was eating broccoli and cheese soup and she was doing something with her spoon. I won't say it specifically, but I asked her to stop because it was really bothering me and more than bothering me. And yeah, that was my first trigger. And you remember that moment? It's not just kind of a... I remember it very vividly. I guess I was still in the 80s. And so there, of course, wasn't a name for it. And my parents sent me to a psychiatrist, a psychologist. They ended up telling my parents that I was a controlling child with OCD-like tendencies and to not give in to my request to... excuse myself from triggering sounds so i was made to sit at the dinner table and it just felt like torture to me but it's like a twisted exposure therapy yeah it was like Yeah, Tom Dozier's method of exposure therapy. I've heard about that. Yeah, it was pretty unpleasant for me. I'm just curious, how quickly did they send you to the psychiatrist? Was it like, had it built up for years or was it immediately the next day? I would say after a couple of months and... i know that they tried their best i know that they did their best and they were just going along with what the professionals um suggested but um it caused a lot of i i think it was traumatic for me as a child i've actually done emdr around my childhood and living with misophonia uh Because I do think a lot of kids have experienced PTSD-like symptoms from having to endure triggers, especially if you've got a very severe case of misophonia. So, yeah, it was awful. It was pretty awful. And was this, you know, bring it back to, since you guys are both in the recovery industry, I'm curious if, you know, as you were growing up, was this kind of like mixed in maybe with other things you were experiencing? I don't know, other issues you were, or do you think this maybe caused some issues later on in life? Oh, absolutely. Absolutely. And funny thing, I usually ask people like how, you know, how does this affect school? You get triggered by students, but it sounds like there might be some other dimensions here, you know, worth exploring. Yeah. It's funny. My little brother has Tourette's. And so he started taking and his tics would trigger me. So it was like this perfect storm of like a torture chamber in my house when I was younger. But no, I am. So I work in recovery. I'm a recovering addict. And I also am a huge mental health care advocate. And I'm not ashamed or afraid to say it anymore, but I'm bipolar. I'm a borderline. And then I have PTSD as well. I absolutely 100% think that my, especially my borderline personality disorder, I think that was created in my childhood. And misophonia had a huge impact on that. Yeah, because I'm sure there are a lot of, well, I can't speak for other people, but I'm sure you're not the only one who's got... you know these other issues that that may that at least you're aware that were probably created from from misophonia so you know it's um i think it's great that you're speaking out about that stuff because it can help other people understand themselves better yeah and i and i talked with smelter about it um i'm sorry i call him smelter uh michael um i talked with him about it and his experiences and growing up with misophonia and then how it affected him later on in life and He's got a pretty interesting story as well, I think. Yeah, why don't we, before we get too far into Heather's story, Michael, I'd love to hear your background, your origin stories in childhood.
That [9:40]: Yeah, yeah, thank you. So this is actually kind of a special monumental moment for me because as Heather knows, I'm notoriously private about my struggles with misophonia. I did not even really know it was a thing for the first 25 years of my life. From about five years on, I remember... my family and the noises that they made when they would eat. And the feelings that I would experience, you know, around the dinner table, a place that's supposed to be pleasant and nice and bonding. I can't really put into words. the adrenaline, fight or flight, rage type feeling that I would experience in these moments. And so here I am surrounded by the people that I love the most and the people that love me the most. and i'm a you know a five six seven eight year old kid that's really not able to emotionally regulate you know like most kids that age don't can't really regulate their emotions very well and and i would lash out and i would lash out at the people i loved and so i very quickly became typecasted in my family uh as the the guy that has an anger problem you know little mike has a has throws temper tantrums he he can't regulate his emotions he's the bad kid and and it really changed the dynamic for me growing up uh significantly i was being told that I was maladaptive, that I had something wrong with me because in these moments I couldn't show patience and I couldn't just sit there and eat dinner like normal people can do. And I agree with Heather. definitely led to me experiencing, you know, seeking relief in other areas. I also battled addiction for the better part of a decade. And that's how I got into the recovery field as well. And it's really defined a lot of of who i am and who i've become but but i'm a little different from heather in the fact that i don't talk about it i talking about it's never been easy for me it's never been good for me um when i try to communicate my condition to the people i love and the people around me i'm not met with warm fuzzy open arms i'm all you know i'm always met with a combative attitude it's it's always made things worse and not better and um i think that that made me push push it inward and and try to bottle up like yeah a lot of us right right just manage the best that i can
Adeel [12:43]: Yeah, it's interesting how you mentioned you got typecast early on. I mean, kids, when we were younger, we were vulnerable to being typecast because we haven't done much in our lives. So it's like anything that's different, suddenly we get that label from family members, friends, teachers, and it's very kind of precarious because it could affect a lot of stuff, social, educational-wise, and kind of Yeah, and make you turn to maybe less constructive ways to deal with your problems. And whereabouts were you growing up, roughly?
That [13:23]: I was born and raised in Austin, Texas. Austin, Texas, gotcha. Amazing family, amazing, loving family. So it's not like I had these... these hard, you know, pull yourself up by your bootstraps, tough love kind of parents. It was just something that they didn't understand and they didn't know how to approach it. I have similar memories from Heather, you know, when she talked about going to the psychiatrist or getting EMDR. I remember I was, my parents, when I was a youngster, they... dragged me to a hypnotist. My mom was trying to quit smoking at the time, and she was hypnotized to quit. And I just remember this guy... telling me, imagine when you're feeling these unpleasant emotions and imagine what it makes you feel like and think of people eating around you and slurping and smacking. And then he was like, now imagine the visual of it without the audio of it. And I guess this is some type of strategy that works for other things. And I looked at this guy and I just realized he doesn't understand Like what this is. He doesn't understand what I'm going through and he doesn't understand how powerless I am over the way it makes me feel.
Adeel [14:47]: That made it worse, I'm sure.
That [14:49]: Yeah, maybe so. Maybe so.
Adeel [14:52]: Yeah. Yeah, that's amazing. And it's amazing that also, you know, at your age, you were able to at least realize that. Yeah. Because it's easy at a young age to be kind of like influenced into thinking that there is something else that's, you know, you're just dealing with a weird, bad version of some other, you know, known problem. But, you know, you could tell he said something that this guy was not giving you anything helpful.
That [15:23]: Right.
Adeel [15:24]: What instantly kind of like what I thought of is like a lot of the feelings of like shame and guilt that we all feel because, you know, we bottle this stuff up and it obviously, you know, strains relationships. Is that what is that kind of what happened with you with your family? Or was it just kind of something that you guys just tried to not talk about as much as possible and going on with the rest of your lives?
That [15:50]: You know, it definitely strained the relationships because there was there was always I mean, you have to eat three meals a day. Right. So there was always there's always times when I was just uncomfortable. It got to the point where I'd have to eat in a different room from my family. And, you know. That that's not that's not a pleasant experience for for a kid to have to feel that way and. I wanted to make a point to mention that I don't believe that this is directly... connected to, and I know less about this than you and probably Heather, because I'm so out of touch with this world. I've been alone in my fight for so long, but I've noticed that it's like, I'm successful in other areas. I'm able to manage other social situations. I'm able to exhibit willpower at certain times. I'm able to show patience. I think of myself as a relatively smart individual. I did well in school. This is something else, right? It's something different. It's not tied to my moral character, my ability to succeed in other areas of my life. But as a kid when I was growing up, you asked about these strained relationships. for years and years and years, it felt like that, right? It felt like I was not good enough. It felt like something is wrong with me. It felt like people don't understand and how will I ever get by? And I've really got to just mention Heather is... just a champion. I mean, an absolute champion for people that struggle with this because I haven't had the courage to talk about it. I haven't had the ability to feel like I can vocalize what I go through until I met Heather. And she kind of introduced me to this world of people that have struggled with the same thing that I've struggled with my entire life. And I'm just forever grateful for her. excited for you know her helping to pull me into this arena where where we can start to look at why does this happen and and who's out there working on it and and can we get better and and uh so i'm just really grateful for her uh advocacy for people with misophonia yeah heather um so when did you realize that this is a community and that it that it had a name um
Adeel [18:41]: I was 27 years old, actually, when I found out that it had a name and, and that there was a community and that there were other people out there like me. And I just remember crying and I've, I have common. Yeah. Yeah. I've started speak, you know, when I started speaking up and saying, Hey, I have this, it has a name. I have run across so many people who burst into tears when I tell them and they're like, I thought I was just, I thought I was crazy my whole life. And, um, And how are you finding these are kind of like strangers that you're, that you're meeting online or kind of in your, in your day to day? Well, I started speaking up for myself. Um, I started picking up coping skills. Yeah, I definitely want to get into those too. Yeah. I magically realized like, hey, you can carry earplugs around. That's something I went so long in my life without doing. And oh my God, it would have helped so much in so many different situations. But I eventually learned to do that. I learned when I'm in a situation that I can't escape. I can't you know, withdraw, which is what they recommend you do when you are around a triggering noises to get away. Um, I have learned to speak up and it's super uncomfortable. Um, it's super uncomfortable speaking up and saying, Hey, and then you have to explain what it is. And I always throw out like Kelly Ripa has it, you know, like it's just, um, Well, we often get the, well, yeah, I find those sounds annoying too. Yeah. Oh, I think I have it. No, you don't.
That [20:35]: Oh my God. Yes. I get that all the time. Yes. Yeah. That's spot on.
Adeel [20:42]: Yeah, Michael and I have been in staffing meetings. I was curious to know if he really had it or not when he told me that he had it because I've heard so many people say, oh, yeah, I've got that. Yeah. And then we had a coworker that was eating and Michael's face turned blood red and I could see him. He couldn't hear the words that were coming out of people's mouths. And he got up and excused himself. And then he came back like two minutes later, but that's when I knew, yeah, he's got it. He definitely has it. Yep. We can almost kind of like when we, yeah, we can always easily explain it in a facial expression to each other where other people would just go over their heads. Yeah. So, and so, yeah, so let's talk about, yeah, speaking up about it. Cause you know, a lot of people are, have probably been shut down a lot and just don't talk about it anymore and don't want to bring it up. What are maybe some, some ways that you, that you do explain it, that you do bring it up to people? That's why I wanted to bring Michael on as I felt like people needed to hear his story because he has been notoriously private about it and has experienced a lot of negative reactions and so have I. But it actually, I didn't really start. Of course, when I found out it had a name, I started... I immediately called my parents and it was kind of like a, see, I told you. I told you this was real type of thing. Did that change their perspective at all? There's a really weird dynamic there. There's a really weird dynamic between my parents and I around the misophonia. I think... they get tired of hearing me talk about it. And there's still just a little bit of that old dynamic left in our relationship from when I was a child and they were told I was controlling and that I was just a, that it was just me being a, it was me as a bad seed essentially. And so there are just little tinges of that when it comes to the misophonia that are still left in our relationship. current relationship so but i've tried going back to college several times and was unsuccessful because someone was deciding to eat cracklings next to me in class every day i just couldn't do it um now since i've been in recovery and i work the 12 steps i'm i'm a 12 stepper i consider myself an alcoholic and an addict um and now that i work for omega recovery I'm a huge advocate for my mental health. And I think that there's such a stigma around mental health and mental illness and substance abuse. Misophonia is right there with them. There's so many people that suffer in silence. They don't know how to advocate. And I want to be the one to... to show that you absolutely can speak up about it. And I just, I try to be as informative as I can. I hand out a letter, the letter, the sample letter that's, I believe it's on, it's on several websites, but there's a letter that you can print out to friends and family. There's a letter you can print out to medical providers and I have been known to give those out very freely. And yeah, I just, I try to speak up when I'm leading groups with our clients in programming. Sometimes they'll bring in popcorn or snacks and I'll say, this is an example of me advocating for myself. And I want you guys to do this as well with whatever it is that you're ailing from. Would you please not eat while we're in this group? Can you save it till after we're done? because I had this condition called misophonia and here's what it is. And then I give a brief statement and a lot of people will say, oh, I've got that too. Or they have a family member that has it. And I even sometimes run into people who have heard of it before, which is really cool. Sounds like you are getting some positive reactions there. Michael, I know you don't like to talk about it too much, but do you want to maybe mention some of the challenges you've had explaining this to people or trying to?
That [25:29]: Yeah, yeah.
Adeel [25:30]: I'm sure a lot of people go through these kinds of situations. And it's good to hear that we're not alone, not just suffering, but just trying to make it through the day.
That [25:40]: Yeah, and I think one of the reasons I've been so private about it throughout my life is because of the resistance I've been met with when I try to explain it to people. And I can empathize with that, right? I can really empathize with... the people on the other end of those conversations to have an individual walk up to you and say like, Hey, like, I know you're enjoying those Doritos right now, but could you please enjoy them somewhere else? And it's like, I can imagine in their head, they're like, well, you know, F you, you know, I can eat my Doritos wherever I want to eat my Doritos. And, and so it's, It's one of those really difficult and sensitive conversations to have. One of the best reactions I've ever gotten to it, thank God, was when I brought it up with my current fiance, Caitlin. We had been dating for... I want to say maybe four or five months, and it was getting serious. She's not a loud eater, which is good, but nonetheless, it still affects me during meals and certain times when she's taking a drink of water even. Those little things that depending on the time and the day, those things that can infiltrate my mental state. But she took it really well. More so than any person in my life, she really, really, really tries to be conscious of what she does around me, the noises she makes, when she eats. She'll wait until the TV is on with volume until she starts eating dinner. When she takes us to a movie or if she reserves food, without me knowing about it. She'll get a seat on the end for me so I can have her to my left and then nobody to my right. And of course, as I'm assuming most people with misophonia can relate to, the first 30 to 45 minutes of the movie is unbearable anyway because there's always a guy that sits down with popcorn right behind you. But no, that's... It's really special to have somebody that at least tries to understand. She might not fully understand, but she tries. And my experience has mostly been negative. Most people don't understand. Most people don't try to understand. And I think that these conversations that we're having to bring awareness to this condition can probably help, right? It's not just that I get annoyed. It's not just a pet peeve. It's something far deeper than that. And it's something that if people, if other people understood what it felt like, I think they would take it more seriously.
Adeel [28:51]: I like how you described it a moment ago where it feels like it's infiltrating your mental state because it's really what it feels like to me. It's like my concentration on many levels has just been shattered. One of the problems I think trying to explain to people is that we only, I kind of, I kind of usually don't think about misophonia unless of course I'm editing a podcast or something, but it's like when, when that Jekyll and Hyde switch turns is that is when you're in the state where you need to maybe, uh, mention something about it, but that's like the worst time emotionally to like try to have a conversation about it, um, which can lead to obviously all kinds of bad consequences. Yeah. And so how do you, how are your, it sounds like you have a very understanding fiance and it's amazing that she knows to give you the kind of aisle seat in various situations. How, what are some other, do you carry around earplugs like Heather? What are some of your other kind of tools of choice?
That [29:55]: No, so I don't carry around earplugs. I've always felt, and Heather's actually given me earplugs before it worked. which I'm really grateful for. But I still am not – like I'm not real comfortable in social situations, you know, sliding an earplug into my ear. I've never really done that. You know, I've seen – I've noticed Heather doing it when other people don't just because we always exchange glances when there's somebody in the room that's affecting us. For me, I've got to be honest. I'm not – uh very good at managing uh those situations. I still to this day get trapped in situations I don't want to be in often. I lose the ability to talk about it, right? Like right now, I'm more so than I ever have in my life just during this podcast with you. I'm verbalizing the way it makes me feel and I'm talking about it and it feels really good, but there's not a chance in hell I could do that. Or at least it feels like there's not a chance in hell. I could do that in a situation when I'm experiencing those feelings or I'm triggered or whatever you call it. Because I lose the ability to cognitively react appropriately. Heather's mentioned we've been in meetings where we've been affected by it. I cannot put my thoughts together. enough to even uh verbalize what's going on in my head and and i think that's i think that's what's so tricky about this condition is it it really you know i almost think of it as like my kryptonite or something right it's like i've thought the same thing that same word yeah yeah yeah yeah it's it's crazy i'll be doing doing great and i'll just be managing situations and managing people and work's going good and i'm happy and man it's a it's a beautiful day and then boom like i i'm in a situation where i you know i'm triggered and and all of a sudden all of my good attributes go away my ability to to deal with the world goes away my ability to think and speak goes away it's it's it's uh really crazy and and uh It's just interesting to be speaking with a few other individuals, to have you two here that understand what it's like, because I've actually never had that in my life.
Adeel [32:35]: Yeah. So, so yeah, you, it sounds like, um, you, you kind of like you get in these situations and, um, you know, don't necessarily carry a lot of tool tools around, um, pre trigger. I'm curious. I try to, I'm curious, uh, asking people like, what is your, um, kind of recovery time? Like, um, is it when you get triggered? Are you like, Oh God, okay. The next half hour gone for me. I need to like, it's going to take me a while to recover or um i'm just curious um yeah what recovery looks like for you uh post post trigger like what do you have to do do you have to get out um take a walk or is it like just uh i don't know put on some music i know for myself um so the the severity of my musophonia directly correlate correlates with how the rest of my life is going so if i'm if i'm abusing substances and self-medicating and i'm not taking care of my mental health my misophonia on the misophonia activation scale like i hover between a seven and nine like i don't get violent anymore i did as a kid because i didn't understand i threw a spiegel catalog at my brother's face Those were like huge catalogs, if you remember. But anyway, no, but when I'm doing well, when I'm meditating every morning, when I'm reflecting, they're called nightlies. When I do a nightly, you know, at night and reflect over my day, working a program of recovery, eating well, exercising, my misophonia. reactions and symptoms are a lot less intense. Therefore my recovery time is pretty quick, but I'm, I think I've got it pretty severely. So it's very often I'll hear a trigger noise and then like, I can continue to hear it. It sticks in my head. Yeah. Stress is obviously a number one, a top factor.
That [34:46]: uh i'm assuming it is for you as well michael is it one kind of a common um yeah yeah i've noticed i've noticed that my sleep my you know the amount of sleep i got the night before directly correlates to my ability to manage and and To just answer your question about recovery time, it's longer than a normal person would expect, right? Like whatever the phenomenon that's causing my reaction, whenever that stops, sometimes I need a good... you know, 15 or 20 minutes before I'm back at equilibrium or, you know, it's not like as soon as it goes away, I'm better. And I think that's one of the things that, you know, I have trouble telling my fiance, Caitlin, about that, right? Because she'll say like, what's wrong? Or why are you in the other room? Or, you know, something like that. And I'm just really, a lot of times I'm just cooling off. You know, I'm trying to get back to a place where I can, be pleasant and I've gotten better about not, um, reacting verbally or, or, you know, like, like Heather said, when she was younger, she would react violently. Even like, I, I remember some times where I've, uh, you know, reacted in, in undesirable ways for sure. So yeah, it's, it's the recovery time is, is, is interesting. You know, I, I assume that, that once you're, you know, and I'm not, I'm no neurologist, but I assume that once your brain is, is, uh, you know, firing in certain ways that just biologically you have to, to restore yourself a little bit before, before feeling normal again.
Adeel [36:33]: Absolutely. And do you both, do you guys, have you guys set up rules in the office? I'm just curious what your office environment is like when you're not working from home. I would love to institute a no gum, no eating policy. But, you know, we haven't gotten that far. Michael and I do a pretty good job of, like when one is unable to articulate, hey, This is going on. The other kind of steps in. But Michael's the executive director of our company. I'm sure he could institute that policy. I could. Can we get your public statement on that, Michael?
That [37:23]: I really, I try my best to... empathize uh with with other people i mean i think there's a lot of good reasons to have a no food in in meetings uh rule right you don't even really have to direct that to to misophonia you know i think that that food can just be distracting and for a lot of people so that's something that we could always uh play with but No, you know, this is all very new for me, you know, learning about it and talking about it. And like I said, Heather's been been great. There's been times when I see I'm like the worst. kind of you know person with it do like do we have a name by the way do you do you call people with misophony or something yeah i've been using misophones some people say misophonic but uh i tend to okay all right i like that yeah i'm the worst type of of misophone because because i sometimes will eat loudly you know and the the irony of that is is uh yeah like heather's had to step in and say like you're smacking your gum yeah and i i and i just like i felt so terrible about that as somebody that because my own but you're both aware so it's like you heather can say something you right and then everyone i think the recovery time probably is relatively quick after that for for everybody compared to other situations
Adeel [38:51]: Well, that brings up a good point. Michael said he felt terrible when I mentioned something. And I've actually dated someone else that had misophonia, and it was a very interesting dynamic between the two of us. But I remember I would trigger him and... awful and then there was uh sometimes he would say things to me and of course he was saying it as he was being triggered so it might have come off very sternly but i remember instantly feeling like this indignant like oh like who are you to ask me to stop doing this you know and that's exactly the same response that i would get from my family when the first time my mom triggered me she looked at me and was like shut up told me to shut up and um you know if i finally gathered the courage to say something you know i was met with who the hell are you to ask me to stop doing this you know and um It does feel offensive, almost, until I am able to move past that and say, oh, yeah, obviously, duh. Like, this is a real thing. It's serious. I, of course, would be, of all people, the most understanding. So it's no big deal. But this whole thing brings up a really good point that I like to always state to people who do not have misophonia. We more than anybody, Michael, you, Adeel, we all, we understand how hard it is to live with someone like us. I know it feels like walking on eggshells at times. And that's when I work with kids and their family members. I definitely have a session where I talk to the kids and I'm like, this is, they feel like walking on eggshells. And this is something that you have to think about on their end as well. And it gives parents this feeling of comfort knowing that it's not us just trying to dictate their lives at all. Like we do understand how hard it is to, to live with us. Caitlin is awesome. I have talked with her, Michael's fiance. She's an amazing woman. And I've talked with her and she said, you know, it's okay for him to breathe loudly and eat chips. But when I do it, you know, I, it, it's a, it's a nuisance, but she's, she's amazing. And yeah, very understanding and I think that's imperative to if you're going to have a romantic relationship that's imperative that you have a partner that's willing to understand like she is so Was there ever, speaking of partners, I mentioned somebody, well, I was talking to somebody in a previous recording, but sometimes it's like in the initial so-called honeymoon period, maybe you're not triggered as much, but then after a while... they start to so weird. I think that's very common. And actually I read a book. I can't remember the title of it, but they, they specify that a lot of music phones have the honeymoon period. And my mom, I was talking with my mom about it yesterday. And I think that's something that aggravates her. Because it doesn't seem fair. You know, when I've got a new guy coming around that I think is so cute and we haven't started a relationship, he can chew with his mouth open and, you know, clip his fingernails in front of me or whatever, you know, and I'm totally fine. But it's like the longer you spend with someone, the more they trigger you. And that honeymoon period, it always ends. But yeah, that's a weird phenomena of misophonia that I think everybody experiences.
That [43:05]: Yeah, I agree. And I'm actually really interested in that period because now that I'm thinking more and more about, I've always held on hope to a cure or a path to recovery, right? Complete recovery. And I'm interested in what's happening in our brains during that period. And are there ways to sustain that? Because I think I probably speak for more than just myself when I say this. You know, I dream of a life where I can react normally. in situations where people are eating loudly or there's uncomfortable sounds around me. And I have experienced periods in my life and people in my life and times where I'm less affected or not affected at all. I'd love to learn how to fill in the gaps, right? I'd love to learn how to indefinitely react normally in those situations. So I'm real curious if there's people working, you know, if there's doctors working on this, if there's, you know, I'm curious about what the path to recovery could look like.
Adeel [44:27]: Yeah, there's a lot of research going on. I was talking to Dr. Storch at Baylor a couple of weeks ago. There's a new research fund that's being distributed. So I'm thinking in the next, I'm optimistic that within the next two to five years, we'll start to hear more results from a lot of research that's happening. Yeah, I think we're all interested, Michael. Duke University's done a lot of studies. Yeah, I mean, I know that I always liken it to, I mean, I always say I don't get to choose what my amygdala decides is the trigger. Because I know it's an overactive amygdala. I know we have abnormal myelination of certain parts of our brain. I think it's just a matter of the brain decides when it wants to that something's going to... This is now a trigger. Small children eating don't trigger me for some weird reason. know a complete stranger or someone that i've spent you know a lot of time around um Yeah, I'm going to be triggered pretty quickly and by a lot of things. And I've noticed as I'm getting older, like more things trigger me. Yeah, has that been the experience? It seems like with a lot of people, Michael, you as well. Have you seen an exponential increase in the types of triggers as well?
That [46:10]: Well, no, no, I don't think.
Adeel [46:15]: in my case that that would be true and i i'm not sure i mean i i've also talked to a bunch of people who uh yeah they've only had like the sound of chips crunching is because they're kind of their only trigger so it's not definitely not universal but uh but yeah i'm curious how it's kind of progressed for you it's been pretty constant um i you know i i do pick up uh and notice new things here and there um
That [46:44]: I think one of the, you know, it's funny, one of the reasons why I've been private about it and I don't talk about it much is it's kind of this like, if you ignore it, it'll go away kind of thing, right? Which I know is not true.
Adeel [46:58]: Very Catholic.
That [47:00]: Yeah, right.
Unknown Speaker [47:01]: Yeah.
That [47:02]: right i just try to like you know it's like a it's like a kid you know putting his hands over his ears like well i can't hear you i can't hear you right like i'm just i'm trying to just like pretend like it's not real um but that hasn't worked right i've tried that my entire life and it hasn't worked and and i think my my fear has always been the more attention i i give it that i'm gonna breathe life into it And I don't know if that's an irrational fear or if there is some conscious awareness aspect to this whole thing. But it definitely hasn't gotten better. I can tell you that. It maybe hasn't progressed throughout my life, but it started bad and stayed constant, I would say.
Adeel [47:54]: Yeah. And visual triggers bother you guys as well? Oh, yeah. Yeah. My mom talks with her hands, and for some reason, I don't know why, but I can't look at it. And if seeing someone biting their nails, even before I hear the noise, it triggers me, or like a shaking foot, definitely. And then there's tactile, when I can hear bass outside, or I can feel bass, like from a car, somebody's got... know a huge system in their car and i can feel that boom boom boom i get extremely uncomfortable yeah i feel like it's a phenomenon that's not necessarily limited to one sense but we've only it seems to be the main one right now So yeah, we're getting close to our hour, but I kind of wanted to make sure, Heather, I talked to you a little bit about, and Michael too, just about, well, since Heather is most kind of maybe involved in the community, I'm just curious, how's the Instagram? What are some of the things you're doing around the community today? And what do you think the community needs going forward, maybe? I know it's kind of a two-part big question, but... Yeah. So as far as specifically toward the misophonia community, my favorite thing to do is I get in forums of parents who have kids with misophonia and they just have so many questions. And it's one thing to... have their their question answered but by someone who doesn't like it's one thing to have another parent of a child with misophonia answer but it's another thing to have someone who's actually you know i've been living with it for 30 years i'm an adult i can explain my experiences as a child to the parent and um I know I get so many messages of thank you so much. You know, you've really helped me so much. I love the Misa Fornia subreddit. I try to engage in that subreddit as much as possible, always throwing out, you know, my. I once did a review of several different types of earplugs, which ones were the best ones. And I try to help as much as I can in that instance. But I think what I'm doing right now with my job working at Omega Recovery, this company that I work for... has a huge it's it's not we don't just work with drug addicts and alcoholics um we work with people that have mental illness and we have a huge emphasis on recovery and the whole picture being you focus on your sobriety but you also focus on your mental health and that includes taking your meds as prescribed every day practicing um you know dialectical behavioral therapy, coping skills, and cognitive behavioral therapy skills. And that has helped me tremendously with my own misophonia. And that's... Doing CBT. Especially DBT, because that's more of like an awareness of your surroundings. What's the D in DBT? dialectical dialectical okay gotcha yeah um they do that with uh borderlines and and people with bipolar disorder and it's it's more of like a practice of awareness of your surroundings and of your body and just being focused on staying in the present um And that helps so much with misophonia. So if you have misophonia and there's, to me, in my opinion, if you've got misophonia, then there's a very high chance that you deal with anxiety, that you deal with depression. A lot of people that I talk to with misophonia have been suicidal before. And lost all hope. And I love working in this industry. And I love working with Omega Recovery because I've been to other treatment centers. And I think our model has such a high focus on wellness, mental wellness. And your physical health is important just as much. I think the work that I'm doing here is super important. And, um, and then again, I just always advocate and speak up about having this aponia and that's, I want to help others and show others that you absolutely can be happy. You can have this neurological and neurological disorder with great psychiatric, um, issues around it but you can you can live with misophonia and be successful like michael he's our executive director and just has the world going for him and he is just super on top of everything always has the greatest attitude and and has grown this company from its very beginning stages we're less than two years old and um and He's just made it what it is. And you can do that having misophonia. And yeah, that's how I'm helping the community. Yeah, you guys are both doing incredible work. Yeah, I love how one of the focuses is on kind of over holistic mental health. Are you seeing misophonia mentioned in your industry or, well, yeah, in the recovery industry other than in your organization? Like, are people thinking about... misophonia in other places as well as maybe an initial trigger to some challenges that they've had in their lives? Or is it still a long way to go for that kind of awareness? I think there's still a long way to go. I know in all of my treatment settings, I had to explain what misophonia was to each of my... health care providers, like from counselors on to doctors. I actually had a nurse practitioner who came in and she had heard of it before. And she reached out to a colleague of hers and asked him, you know, how he because he had a patient who had it. They came together and they put me on propanolol, actually. And that was like the wonder drug that really. I don't know. It really helped me with my misophonia. It really dulled the the jolt of adrenaline, that response that I get from triggers. So I thought that was really cool. But like our clinical director named Sarah White, she's amazing. She she's heard of it before and understands it really well. And I still think we have a long way to go, though. think we have a long way to go the last treatment center I went to made some special accommodations for me because I mentioned ADA and I was like this is federal you really should accommodate me yeah but yes I still think we have a long way to go but I just know I can do my part by speaking up about it and educating others Absolutely. Yeah. I think a lot of people are benefiting from what you've been doing. And I'll have links to your Instagram account and everything in the show notes. But I feel like we can go on for hours. Maybe we'll do another, an annual maybe check-in or something. Yeah. Thank you for having us. Maybe Michael gets married. Yeah. yeah without a doubt and congratulations on finding somebody so um understanding that's that's amazing a testament honestly probably to to to kind of you how you've explained to i know you probably you know you know you think of yourself as being private but i mean that's um you know that's it's not just because she's um this is kind of how you've approached it with her and so that's that's great uh that's great you were able to do that Yeah, thanks both of you guys.
That [56:42]: Thank you so much for your time and for everything that both of you guys are doing. And this has been a really unique and special experience for me. And I'm going to challenge myself to be less private and to do what I can to be helpful. So if you guys ever need anything, let's stay connected. I'm happy to do a post-marriage follow-up episode or whatever we need to do. And just thank you so much for your time.
Adeel [57:10]: Thank you both of you, Heather and Michael. That was so good to listen back to. Remember to check out MusophoniaPodcast.com if you'd like to be a guest. If you're enjoying the shows, please consider hitting the five stars on Apple iTunes. Music as always is by Moby. And until next week, wishing you peace and quiet.